She went through her first bout of chemotherapy. She did everything she could do to fight. She called it, "The fight for my life". She drank Noni juice, ate potato leaves, and all other things that she heard would fight the cancer. She went into remission. I decided to move to the mainland, Ohio, to make a better life for myself. She didn't want me to telling me, "What if something happens? You don't know with this kind sickness." Despite this, I moved anyway. My mom was proud that I did. But soon afterwards, her CA-125 crept upward. Therefore, she went through many bouts of chemotherapy for quite sometime.

She had complained about a lump on her shoulder for 2 years. After the 2 years, her doctor decided to finally refer her to a specialist at Queen's Hospital (Hawaii). She had bouts of radiation as well as chemotherapy. As time went by, her health continued to go in a downward slope. In Oct. 2003, her legs started to swell. Little did I know because she did not tell me until Feb 2004. She worked on Feb 20, 2004. On Feb 22, she went for radiation. She was then taken to the ER because she was unable to walk. The swelling had worsened. I took the next flight back home to Hawaii and arrived on Feb 23, 2004.

In July 2000 I thought I was in good health, maybe not perfect, but good. My only complaints were a bit of asthma, a few minor allergies treated with Claritin, a tracheitis problem that kept coming back with a cough, and a few extra pounds I couldn't lose. I was 52 years old, married for 14-1/2 years, with a 10-1/2-year-old daughter. I homeschooled my daughter, was one of the leaders of her Girl Scout troop, and did some part-time work writing web pages.

One week after the Fourth of July I went to my Primary Care doctor (an Internist) for a regular six-month checkup without any worries. My risks for cancer weren't a consideration. I always heard that you need to have a sister or mother with breast or ovarian cancer to have an increased risk. I didn't. What I had was a paternal grandmother who had died from breast cancer in her 50's, a paternal aunt who had died from cancer in her 50's, and a maternal aunt who died from ovarian cancer.

I casually pointed out some swollen lymph nodes on my neck that I had first noticed when I had been sick with a virus. How long ago? About six weeks. Too long he said. He wanted me to have it checked out so he referred me to the same doctor I'd seen 8-1/2 years earlier for a partial thyroidectamy (benign). He saw me two days later. I should have known I might have a serious problem when my doctor made the appointment for me. In July I had a CT scan of my neck, followed by an ultrasound of my neck.

On August 3 I had a strictly routine yearly exam with my gynecologist. All he said was get a mammogram and come back next year. I had an infection in my umbilicus (that later was diagnosed as a metastasized tumor from my left ovary) which he looked at and told me that it would have to be lanced if it didn't clear up.

I had a lymph node biopsy on August 9th. On August 15th my internist gave me the diagnosis: papillary adenocarcinoma. I asked him to write it down. He told me that the lymph node was not the primary site and that the next step was to find out where it came from. He referred me to an oncologist at St. Barnabas Cancer Center. The first appointment available was for the day after Labor Day. In the meantime I scheduled tests: mammogram, thyroid ultrasound, nuclear thyroid scan, CAT scan.

I met with the Oncologist the day after Labor Day. He set up an appointment with a breast specialist for the following day since the mammogram results were suspicious. I had an ultrasound in the breast specialist's office and he arranged for a biopsy to be done on Friday when he confirmed I had localized advanced breast cancer.

The lymph node tumor was on the left side and the pathology report indicated it was not from the breast cancer in my right breast. Another week was spent figuring out the origin of lymph node involvement to rule out thyroid cancer. I arranged to pick up slides from my thyroid surgery (8-1/2 years earlier) and brought them to my oncologist. He called us in for an appointment on a Friday when he gave the final diagnosis: ovarian cancer and breast cancer. By this time it wasn't a surprise because I'd thought that was decided a week earlier.

I was referred to a Gyn-Oncologist with offices two floors up. We took the elevator and made an appointment for the following Monday. The doctor was leaving for the weekend when we were in the office and he talked to my husband and myself. He and the oncologist had already spoken about me. On Monday, after examining me, he scheduled me for surgery as soon possible to remove my uterus, fallopian tubes, ovaries, and umbilicus (definitely metastasized from the tumor on my ovary) as well any other sign of cancer. He explained his philosophy on surgery. He won't do too much because he doesn't want to affect my quality of life.

We got a call later in the day - surgery was scheduled for Thursday. Surgery was scheduled to take 1 to 2 hours. Instead I was wheeled into recovery after just 25 minutes. There was such a big difference between the CAT Scan done on September 2 and surgery on September 28 that the surgeon was surprised. He wasn't able to remove as much as he planned. He wasn't able to remove my ovaries or tubes. He did remove my uterus, omentum and umbilicus. As he explained it to my husband, if he wanted to take all the cancer out, he would have had to remove everything from here (hand held high) to here (hand held low) and that was just too much.

On October 2 I had my first of 6 taxol/carboplatin treatments and went home. By Sunday I felt well enough to take my daughter to church. I had treatment #2 on October 23. The doctor measured the remaining lymph node tumor and said that it was smaller. He also thought my breast tumor was smaller. By Sunday I felt well enough again to take my daughter to church. The following week I felt well enough to take my daughter and her friend out Trick or Treating. They got tired before I did!

I saw the GYN-Oncologist and he reported that both he and my oncologist believe I'm making good progress. All indications from the exam were that the chemo is working to reduce the size of everything that could not be removed during the surgery. If all progresses well, my oncologist will tell me when it is time to go back to see him and have more surgery to finish what he started. I have chemo #3 the day after my 53rd birthday. My CA125 is down to 350 from a pre-surgery 451. By Sunday I managed to take my daughter to church but I didn't feel well.

I had another CAT scan done on December 1. They were not able to find a vein to inject the contrast, so I only had it done without contrast. The results were basically the same as the one on September 2, but a little worse. However, there was a 3-1/2 week delay between the first CAT scan and surgery, and the surgeon had been surprised by what he found. I think that a comparison might not be very valid because of that delay. If this CAT scan looks a lot like the one on September 2, that might indicate an improvement from the time of surgery. I hope I'm right and it isn't just wishful thinking.

I had Chemo #4 on Monday, December 4. On Friday I got the results of the blood tests. CA125 went down to around 250 but the CA27/29 went up to 44. My doctor didn't understand this since the tumor in my right breast is smaller. On Sunday I didn't get to church. It was the first Sunday that I missed going to Mass since I got out of hospital on October 2nd. I was still feeling very fatigued. It seems each time I have chemo the fatigue lasts a few days longer.

I felt great for Christmas and was strong enough to bake (and eat) a lot of cookies and I only gained one pound! I have chemo #5 the day after Christmas but won't see my oncologist until January. Then he's going to setup another CT scan and more blood tests. I'm hoping those tests will show some progress. On Sunday (New Year's Eve) I missed church again, but our cars are still snowed in anyway. I'm feeling more muscle and bone aches and fatigue this time. I don't get any real nausea from chemo but my appetite is off and things don't taste good.

When I went for my checkup on January 8th the lab nurse had a very difficult time getting blood out of me for tests. The chemo nurses had also had a hard time with my skinny little veins. My doctor told me that the time had come to have a port installed. That was done on January 11th. The surgery lasted one hour, longer than the surgery in September.

On January 16th I had the last of six scheduled chemo treatments with Taxol and Carboplatin and was scheduled for another CAT scan for February 5th. I know my GYN-Oncologist wants me back for more surgery at some point. As he pointed out, it isn't advisable to leave ovaries in a woman who has had ovarian cancer.

During January I started taking Glutamine before and after chemo to see if it would help the neuropathy in my feet. It seemed to help in reducing it. At least they didn't hurt at night from the weight of the covers and instead only felt a little numb and tingly.

February 2001

I had another CAT Scan on February 5th. The results showed no change from the last CAT Scan. I was told this means that my disease is "stable" and I am to have two more treatments of taxol and carboplatin. I had treatment #7 on St. Valentine's Day. I'm glad that my husband gave me my box of chocolates the day before, because I quickly lost my taste for them from the chemo.

I am a 31-year-old female, mother of two. On October 4th, 2001 I was diagnosed with Stage 3C ovarian cancer. I want to tell my story. I have before and after photos* that show my will and determination as a person. I went from being overweight and unmotivated to losing 39lbs and 13.5% body fat in three months on Bill Phillips "Body for Life" program. I really had accomplished something for myself finishing in the top 1,000 out of 700,000 entered. I had a goal mentally and physically and even exceeded what I thought was possible. One year later I started having stomach and pelvic pain, which was diagnosed by my OB-GYN as endometriosis. My doctor decided that I needed to have a hysterectomy and when I had the surgery he found a quarter pound tumor the size of a softball. After my debulking surgery I was told that I had Stage 3C ovarian cancer. I had worked out six days a week to build the strongest body I could and now I have cancer??? I recently (2/28/02) had a second look surgery. I would like to tell my story that you can go from overweight to your dream body then to where I am now with a permanent colostomy, groshong catheter, and no hair. To tell people that you can deal with anything that life throws at you. If I can touch even one life of someone recently diagnosed it would mean the world to me!

On my 28th birthday, I found out I was pregnant with my third child. My husband, two children and I were so excited. We couldn't wait until we held our new baby in our arms and looked forward to sharing our lives together. As a family, we enjoyed many walking trips, but one will always remain in my mind....

It was a beautiful summer day. I was 7 weeks pregnant. We had decided to go on a walking trip and as we were having so much fun, the day passed by quickly. After arriving home and trying to wind down for the day, I felt a little discomfort and realized I was spotting. Of course I panicked as you can only imagine the thoughts I was having. I began to pray for my baby. My intuition told me something was wrong.

Upon contacting the hospital, they requested I wait until the morning and to keep watch over how I felt through the night. For some reason, one that I cannot explain, I continued to have a bad feeling about what was happening. Most of the night was spent worrying about my baby, and as the spotting continued, I headed to the hospital.

Once arriving at the hospital, I had an ultrasound performed. The doctor said the spotting was due to a little clot underneath my uterus and that I shouldn't worry as it would soon dissolve. He then sat down, and told me that there was another problem. As he cleared his throat, he asked me if I was aware that I had a large cyst in my left ovary. The shock was devastating. I wasn't sure what he was telling me exactly. All I know is that I had the longest drive home.

On the following day, I visited my doctor. She didn't exactly know what to say to me, but the look on her face told me she too was worried. She immediately referred me to an OBGYN doctor, who made an appointment for me the very next day. The OBGYN doctor listened carefully to me as he reviewed my file. Before finding out from him what I was so afraid to hear, I explained to the doctor all my fears. I told him that I loved my baby. I told him that I didn't want to lose my baby. I cried and cried. I needed him to understand that I was so very afraid of what I expected he was going to tell me. He touched my hand and said that he thought I had ovarian cancer.

The room began to spin. Cancer? Me? He had to have been wrong! I am a young and healthy mother. My uncontollable tears flowed. How could this happen to me? How did this happen to me? The doctor then told me something that no pregnant mother would want to hear. He said that I would need to have surgery to have the tumour removed. The surgery would have to be performed on my 20th week of pregnancy, as this was the safest time for the baby to successfully recover from any trauma.

I prayed to God for his guidance, support and to help me make the right decision. The world so often felt like it wasn't there. All that mattered to me was my family. I wanted to have a healthy baby. I wanted to be here for a long time. I couldn't imagine my children without me. I wanted to see them grow up, get married and have their own families. I wanted to fulfill all my dreams. I was too young to die. My baby needed a chance to live. I prayed every moment I was awake. My faith in God became stronger each day. I knew in my heart that no matter what happened, God would take care of me.

My husband held me and explained to me that he wanted me to have the surgery as our other two children needed a mommy. I knew the ultimate decision was mine. The decision to have my ovary removed while pregnant would risk my baby's life. If I remained pregnant after the surgery, my child could have ended up with many serious problems. The love for my unborn child was stronger than I could ever explain, as I knew my baby's fate was in my hands. The confusion was overwhelming. From weeks of crying, I looked awful and many around me were worried for my health.

The time had come to make my decision. In my heart I knew that God was right by my side. Upon my visit to the OBGYN doctor, I asked for his personal opinion. He said to me, that if I was his wife and we already had two children, that he would want me to have the surgery. He said that God gave me two healthy children to take care of and it was my responsibility to be there for them. As he did not know how quickly the tumor was progressing, the cancer could be at its worst stage at time of delivery of my baby. If I waited until my third baby was born to have the surgery, my husband may be taking care of 3 children on his own.

God gave me the strength that day, for I decided that this silent killer, which is what ovarian cancer is really called, was not going to beat me. I decided to have the surgery. While recovering from the devastating experience, my baby's heart beat dropped very low. I cried and prayed. I couldn't lose her, not now, not ever. My faith in God and my many prayers is what got me throughout the next several months.

My beautiful angel was born by C-section at full term. She is now 5 years old, healthy, happy and so very special to me. My dear daughter and I have a bond that I could never explain to anyone. I risked her life to save mine and I must always remember how much I prayed for her. I believe in my heart she was and still is my guardian angel. If I wasn't pregnant with her, I would never have known about having cancer and maybe it would have been too late. My daughter is a gift from God and each day I thank Him for my beautiful child and for my treasured life.

My name is Angela B. and my mom was diagnosed with Ovarian Caner last weekend on Mother's Day weekend (May 13th, 2006). They found cancer cells around her lungs in the fluid, and she looks like she is about 9 months pregnant. The doctors all have a positive attitude, but I'm still not sure how she's going to do. She just had a bypass surgery on her heart October of last year (05) because of shortness of breath...we think now it may have been undetected cancer instead of the problem that they diagnosed her as having (a blocked artery of only 60%).

She is 49 years old and has been through chemotherapy once in 1995 for breast cancer. She's a survivor of 11 years for that. A very strong and religious mother of four wonderful children and four grandchildren, newest is now 10 months old.

With her first treatment being last week she's very, very tired and suffering from depression and anxiety. I'm really worried about her and I know all there is to do is to be very supportive and to pray very hard. They are going to give her 6 chemo treatments first (one every three weeks), then check the tumor(s) and then if necessary debulk or resume 6 more treatments. She's had so much abdominal ascites; they say surgery would be nearly impossible at this point anyhow. Chemotherapy should dry some of it up. If anyone has had similiar stories I really want to hear about them. I would like to know things to expect and also someone to relate to. Please E-mail me at angie1147905@yahoo.com.

Thank You,

• An understanding of the doctors involved with my wife's medical care at our local home town hospital.
• An understanding of the lack of uniformed cancer care being practiced here in the United States.
• Cancer patients frequently die from their cancer treatments and not from the cancer itself.

When I was diagnosed I had a CA125 level of 2750! I guess they want you to be 30 and below! After surgery, where my surgeon/oncologist removed my right ovary (where the mass was); as much of the omentum (lining of my abdomen) as possiblit--as it was dotted with tumors; and he peeled my bowels off of my uterus, my CA 125 level dropped to 850!

From the moment I was diagnosed I had no doubt in my ever-loving mind that I would beat this thing. I kept a positive attitude all through everything--I wasn't in denial..but there was no sense in crying...I had a job to do. Even the doctors and nurses said I was different from the average patient.

I started my chemo of Taxol; carboplatin and Avastin (on clinical trial) in early December. Well, by February my count was down to EIGHT!!! YAY!!!

I finished my last session of the multiple drug chemo and my count is down to four. I will now go every three weeks for just the Avastin, for the next year. I don't mind it at all.

The third and the sixth chemo sessions really kicked my butt. But I have not had horrible problems...just multiple side effects that kind of wear you down. I get tired, very tired...but I have learned to be patient and do what I can and rest when I need to rest.

This is the first time I have visited a cancer site on line. I didn't want to read bad things on the internet...I didn't want to get discouraged. My partner is a nurse and she bore the burden of doing all the research, sorting fact from fiction; reading the stories that didn't have a good ending. It was harder on her and my family and friends than it was on me, I swear. She would "dole out" information to me as she thought I could handle it/understand it.

I feel very fortunate that I am going to make it through this with only minor "glitches" along the way. I feel that having a positive attitude, doing what they tell you to do, making yourself get up and get going as much as you can do really helps.

My doctor is amazed, but I am not that shocked by how this ended up--as I said, I knew I was going to beat it...I just didn't know it was going to happen THIS FAST!

September 10, 1999   I'm packing to leave in the afternoon for a weekend trip. When I answer the phone, it's one of those "Is this Arlene Santoro?" stranger voices. I'm almost ready to say "No thanks, take me off your telemarketing list." Before my finger reaches the disconnect button, the voice identifies herself as Dr. Holt. "Your Pap test shows malignant glandular cells." Surgery is mentioned. A second scraping needs to be done to check the upper regions of the birth canal. She'll do it in the office to save costs. There must be a mix-up of slides. Denial is such a useful tool.

FIRST THOUGHTS   Tests, tests, tests, surgery. TAH/BSO, micropapillary serous adenocarcinoma, probable primary peritoneal, IIIa. Everything depends on the pathologists. I am on cancer time. The first report says Low Malignant Potential-prognosis good. Kurman, the Johns Hopkins specialist says, "No, this is a LMP sub set, prognosis extremely poor."

From this day forward I sail uncertain stars, No safety net, no chart, back-pocket-tucked. This I know, there is no turning back.

LIFE GOES ON   Maybe this section should be, "life changes." Maybe, that is what "going on" means. I take 7 rounds of taxol/carbo. I manage better than most. I think more introspectly now. I begin journal writing Because I love life I exercise, take yoga, eat soy-miso-hummus, try any supplement promoting the immune system, give up dairy, sweets. I buy organic produce. I increase vegetables/fruits. I drink green tea. I zap. I try flax seed/oil/cottage cheese. I relish my Arthur time. One newly appreciated day at a time. I am impressed how society tries to help. The Wellness Center, the Ovarian group, strangers on the internet list serve. Self indulgence appears. I am staying with a modified heavy vege diet, but I'm buying better beer. Many times I've said to myself that I've already had more than my share of happiness. Oblivion holds no fear.

Chemo stopped when I base-lined at 5. My post chemo checks were 5, 6, 5, 10, 21, 36. The trend does not look encouraging. In limbo I wait and watch. Then, I feel a subtle tightness in the abdomen. . My belly is bloated. I gain weight. It seems clear to me the the beast is back. Everything has changed. Where once I dreaded the word "reoccurrence" I now know that it's just an obstacle. More number waiting, 58, 55, 91, 188 The cat scan shows nothing. Although counter intuitive, doctors, including from a second pathologist and a second gyn/onc say to wait, wait for something that if they treat, they can calculate effectiveness.

So I went to my local GP who said that I was suffering from stress and wanted to put me on an antidepressants. I was tired but never really felt stressed out, so I went to another GP, a lady this time. She acknowledged that there was something very wrong and asked if I had any other symptoms. So I mentioned that I had problems with my bowel, like if I was shopping and felt pain, I had to always run for the nearest bathroom. She sent me to have a virtual colonoscopy, and when the results came back it said I was OK, on reading the results I felt there was something wrong as they mentioned a tubal ligation and I had never had one.

I took it on myself to go back and make inquiries. The doctor took me aside and went through the x-ray then he admitted to me he had made a mistake. I asked him to send another report to my GP and he said yes. A week later no report so I went in to see them and finally a report came back to the GP. This time it was the same saying I was OK, she has had enough and trusting me sent me to had an abdominal scan. It came back saying I had a 15 cm tumor on my left ovary, I was then referred to a gynecologist.

On seeing the gynecologist, he booked me into the hospital for a hysterectomy the following week. I had the hysterectomy and spend the following 7 days in hospital, on release I was told to give the gynecologist a ring a few days later. On ringing the Gynecologist I was told the tumor was malignant and to come in and see him a few days later. I went to see him and was told I had the hysterectomy and debulking and that he felt he had removed all of the cancer. He then sent me to an oncologist and he said I needed to have 6 doses of Taxol and Carboplatin and started the following week, once every 3 weeks.

I was lucked out I guess, my nauses was kept to a minimum with steroids although I mostly ate salads. Lost my hair about the 3rd week and had very bad pains in the legs. So far the blood tests say I am cancer-free although before I was diagnosed, the blood tests also said I was cancer-free. I am still suffering from effects of the chemotherapy, peripheral neuropathy in my hands and feet, acute tiredness, memory problem, my skin keeps breaking out and I have tinnitus.

Mom's body was debulked of the tumor but it had wrapped itself around her colon and had spread along her colon to the degree that her entire colon had to be removed. She is now living with an ileostomy.

Mom's first round of chemo was the carboplatin/taxol. It seemed to work but the effect was short-lived. She started another round of chemo in Sep 2007 with doxil. The doxil did nothing to help her. Her CA-125 counts never went down while taking it. In Nov 2007 Mom had to be hospitalized with severe abdominal pain. Her oncologist had dismissed it as acid reflex (don't get me started on this!!!!????!!!!). The cancer had spread while she was on doxil.

Now she is in her third round of chemo with topotecan. She has tremendous bloating in her abdomen and now has to puree all of the food she eats. She eats very little and is very weak. She is still fighting but her courage and strength are waning.

My concern now is her depression and her denial of it. She doesn't leave the house much because of the gas in her abdomen and the uncontrollable effects of it, i.e. burping and passing gas through her ileostomy as well as the very loud gurgling of her stomach and small intestine.

It is hard to watch someone you love so much suffer.

I was 10 years old when I first started menstruating. At the time, my mother was dying of brain cancer. I can remember being so upset that something was happening to me, also, and was afraid to tell my father. He found some of my bloody underwear, which I was hiding from him, and had a female friend of the family tell me the facts of life because my mom was too sick.

I didn’t have an easy time of young womanhood. My periods were painful and heavy. I would spend the first day of every cycle lying in bed with a heating pad on my stomach and making frequent trips to the bathroom to throw up. I missed a lot of school during my teen years. People would tell me that it was all in my mind, and if I would just get up and stay active, the pain would go away. I was taken to an osteopathic doctor for my first internal examination, and he put me on birth control pills to take care of the cramps. I was 13.

I met my future husband when I was 16 and he was 21. We were married in 1972 when I was 19. After four years, I had my first pregnancy. I miscarried at three months. After a few months of letting my body get back to normal, I was able to conceive again. Except for occasional nausea, I had an uneventful pregnancy. Six months into my pregnancy, I noticed some spotting and after telling the nurse at work, I was told to drive to my Gyn’s office. He diagnosed an incompetent cervix and said he would have to perform a Shirodkar that day. I couldn’t locate my husband, so I drove myself to the hospital. I can remember crying and praying on the way that God would let me have this baby. Thankfully, God heard my prayers and three months later, in 1976, I had a healthy, beautiful baby boy. I was able to conceive again, had another Shirodkar in my third month of pregnancy, and in l978, delivered another healthy, beautiful baby boy!

After my two successful pregnancies, the periods would still be painful and heavy. I faithfully made my yearly visits to the Gyn. One day I got a call from the office that my pap smear showed pre-cancer cells. The report had been sitting on the doctor’s desk for a week before they called to inform me of the results. I was upset about that, and decided to change to another Ob/Gyn practice. Eventually, after years of complaining of heavy bleeding and cramps, I had a laparoscopy and was diagnosed with endometriosis, and I also had a fibroid. The Gyn told me I had high levels of estrogen. I was given injections of a powerful drug called Lupron, which puts the body in a menopausal state. I had these injections every month, for six months. Everything seemed to be under control for a while, but the heavy bleeding and cramps came back, and I started complaining of spotting between periods. I was having regular endometrial biopsies and was diagnosed with endometrial hyperplasia. The Gyn prescribed medroxyprogesterone, 10 mg., to control my irregular bleeding.

I started keeping notes of my irregular bleeding and presented them to my Gyn during a routine office visit. I can remember asking her if I should have a hysterectomy, since I seemed to be plagued with this diagnosis of endometrial hyperplasia. I was in my late forties now, and I surely wasn’t going to have any more children. She told me that it wouldn’t be a good idea, that it was major surgery and she didn’t think it was necessary.

Around 1998, I wasn’t feeling well in other areas of my body. I started experiencing indigestion and gas and I was popping Tums and over-the-counter gas medications like crazy. I also started noticing an odor in my nose and this led me to an ear, nose and throat doctor. The odor scared me because I remembered that my mom smelled an odor when she was diagnosed with a brain tumor. After ordering a CT scan of my sinuses that showed everything to be normal, he suggested I see a gastroenterologist. He thought the odor might be coming from my stomach. In the meantime, he prescribed Zantac for my acid reflux. When the prescription for the Zantac ran out, I was still experiencing indigestion and gas. I started eliminating certain foods from my diet to see if it would help. I found Romaine lettuce to be more tolerable than Iceberg lettuce and always use that when there is a choice. I was making homemade soups, using recipes from health food cookbooks, drinking lots of water and exercising, but nothing seemed to help. When I turned 50, I finally got up the nerve to go to the gastroenterologist. In March 2003, I had a colonoscopy and an endoscopy. I had one polyp that was removed on the spot and declared negative for cancer. The endoscopy was normal. The gastroenterologist prescribed Zantac and said, “See you in five years.”

I had my yearly Gyn appointment in early April 2003. I mentioned to her that I had a lot of pain in my left side and was having gastrointestinal problems. She ordered a sonogram during which they inject a saline solution in the vagina. They found a cyst on my left ovary, which concerned them because it was large. The doctor said they would do another sonogram in three months to see if it was still there. The same month, my Gyn also performed a D&C because I was still experiencing unusual bleeding between periods. I was diagnosed with endometrial polyps and a thick endometrial lining (hyperplasia). It was back to taking the medroxyprogesterone. They kept an eye on my left ovarian cyst with sonograms and it finally disappeared, but I developed three more cysts in my right ovary. That was in June 2004. They told me these were small and it was not a concern. They would keep an eye on them.

It was a beautiful fall weekend in October 2004. After a four-hour drive, we finally arrived in the “Happy Valley” for a Penn State football game and tailgating party. I was so excited. It was going to be fun! Unfortunately, I was getting my period–or so I thought–because it was hard to tell these days since my periods were so irregular. When we arrived at the motel, I just wanted to have a cup of hot tea because I was having some cramping and felt bloated. My husband managed to get me a cup of tea from the office manager. I sat in the chair drinking my tea while my husband got ready for bed. It was a long night. I can remember curling up in the fetal position, not feeling well and having a lot of pain. I was taking ibuprofen every 4 hours. I managed to have fun the next day at the tailgating party, thanks to the ibuprofen. The football game was exciting, although the icy cold bleachers seemed to send a chill right up my buttocks into my back. I continued to take the medication for the pain and got through the weekend without a complaint. When it was time to go back to work on Monday, I knew I had to do something because I was still in pain. It was getting hard to walk! I called my primary care physician’s office and made an appointment with the nurse practitioner for that afternoon. I give her the credit for saving my life. When I explained my pain to her, she felt my right side and told me she thought it was my ovary. She ordered an ultrasound at the hospital, had a nurse draw blood for a CA125 blood test and told me to call my Gyn’s office and make an appointment with whoever could see me ASAP. (Prior to this, no doctor had ever ordered a CA125 blood test. When I had asked about it some time before, my Gyn had replied. “It’s not routinely given because it’s prone to false positives.”) When I got home that Monday night, there was a message on my answering machine from the nurse practitioner. She wanted me to call her at the office. She’d be there until 7:00 pm. I immediately picked up the phone and called her. She told me the ultrasound showed a mass and asked me if I had been able to get an appointment with the Gyn. I said I had one for that Wednesday with someone other than my regular Gyn. The Gyn examined me that Wednesday and ordered a CT scan. When the results came in, he called me and told me I had endometrial hyperplasia suspicious for adenocarcinoma. It could be endometrial cancer. My CA125 was also elevated to 98. I was advised to have a total hysterectomy. He said the cancer was probably contained in my uterus, but staging would be done during the surgery. They suggested I see a gynocologist/oncologist and gave me the name of someone well respected in the area.

I saw the gynocologist/oncologist. in mid November 2004 and he agreed with the diagnosis. He also found a polyp on the inside of my cervix, that was hanging out through the cervix It later tested positive for cancer. On December 14, 2004, I had an “exploratory laparotomy, lysis of adhesions, tumor debulking, hysterectomy, resection of multiple peritoneal disease, bilateral ureterolysis, resection of bowel nodules times two, one with enterotomy and repair, radical omentectomy, appendectomy, and retroperitoneal extensive lymph node dissection.” I was 51 years old. At the conclusion of the surgery, there was “No gross residual disease left behind.” They told my husband that they found cancer in my uterus and both ovaries, but the pathology report would be more specific. I tried not to think about what they might have found for the next couple of weeks. After all, Christmas was right around the corner!

In early January 2005, I was given the good news--if you can call a cancer diagnosis “good news.” I had stage 1C endometrioid-type ovarian cancer in both ovaries, FIGO grade 1 tumors, and stage 1C endometrioid-type endometrial cancer, FIGO grade 1 tumor. I had extensive endometriosis. So, later that month, the gynocologist/oncologist put a port-a-cath in my chest, and I received six monthly rounds of chemotherapy (Taxol/Carboplatin). I was thankful that we caught it early. My gynocologist/oncologist. told me my 5 year survival statistics are 95-98%. I just had a checkup in October 2005 and everything looks good. He said I have a small pocket of fluid on my left side, which is normal and he isn’t concerned about it. My CA125 is now down to 8.3. I’m very thankful that my chemotherapy is over and things are looking up. The chemotherapy did not keep me from working. I was able to hang onto my job, thanks to the kind people who did my job for me when I wasn’t feeling well. My hair is growing back now, and I love having eyelashes and eyebrows again! You learn to be thankful for the smallest things. I intend to be here to see my sons get married some day, and to look forward to many more years with my husband. I’m happy to be alive!

My suggestions:

Know these early warning signs of Ovarian Cancer:

• Indigestion
• Gas
• Bloating
• Nausea (I didn’t have this)
• Sometimes Pain (I was very lucky to have this)
• Constipation or Diarrhea (I had occasional constipation)

I also recommend an ultrasound procedure where you drink 32 oz. of water an hour and a half before your appointment. The technician told me they get a clearer picture that way. Many doctors are in disagreement with this, but the ultrasounds I was having at my Gyn’s office did not require drinking the water. The hospital’s ultrasound did require drinking water and that is the one that revealed the mass.

Finally, don’t take “No” for an answer if you feel that there is something wrong. You know your own body better than anyone else. Listen to it!

Lovingly submitted by

She continued to have difficulty breathing, tried another chemo which worked for a short time and to get more and more tired. Little by little she stopped doing things like her laundry, driving or cleaning up and then she ate less and less. Then we spent time at the hospital for a clot she had in her leg.

We started taking her to the hospital to have her abdomen drained of fluid every couple weeks. It gave her relief for a day or two before it started growing again and the legs swelled. The swelling got worse, she stopped being able to wear shoes or want to go anywhere.

I think she really stopped eating in July. She ate a good plate full of food on July 1st at a picnic. She felt good that day, laughed and enjoyed the day. She seemed herself that day and continued to feel okay for a couple weeks. She even cooked for my brother's picnic on July 21st. But shortly after that she stopped eating and got very weak. Oh, she nibbled here and there and I would slice ham into small quarter size bits and wrap them individually. She would eat one or two and a handful of grape tomatoes. That was a daily amount of food she would eat. She also kept up on drinking energy drinks to help her stay alert.

We went to the doctor's in early August of 2007 and they told us that they did not have any more chemo treatments she could try. The cancer had become estrogen resistant and her body was not tolerating the treatments anymore. They told us it was time for Hospice to get involved. I remember her looking up from the wheelchair I brought to the nurse’s eyes and asking if she would be around for Christmas. They said probably not and she looked at me with tears in her eyes. It was the last time I saw her cry about her illness and dying.

Once she took in the news and met her hospice nurse she really perked up her attitude and became positive and happy again....as she had during her treatment. We planned big dinners every weekend, had a huge picnic over Labor Day weekend and had company in all the time. She loved the attention.

One day she said to me, "my biggest regret in life is that I did not visit friends when they were sick as often as I should have. I was always busy with work or the family." She gazed at the flowers someone gave her and said, "these are such an expression of love....I should have been more sensitive to other people's sufferings." I never thought she was not sensitive to others; we did visit sick friends and family.

She said goodbye to everyone and visitors left feeling uplifted and hopeful about everything when they visited her. She joked about and was incredibly candid about her impending death and openly shared her feelings with us all. I asked her if she was mad about leaving us while she was still so healthy and vital and she said, "No, this is what is meant to be...it is my journey to take." She was so full of life even right before her death.

One day I was taking her slippers off and helping her into bed and I looked up and she grabbed my face with her hands and with tears in her eyes said, "Thank you...Thank you for what you are doing for me. I can not tell you how much I appreciate this and love you for this." Those were not tears of regret but tears of love and I took that moment as a gift from her.

In the last couple weeks of her life she started to react to the pain patch. She was grabbing things with her fingers, almost like she was sewing. She even thought that was funny....she did not know why she was doing it. Then she saw people (like my nephew) sitting in the room...She began to talk to herself.

It got bad one night and she fought me when I tried to wash her up and get her situated in the hospital bed. I called the Hospice and asked them to find a bed in the Hospice Hospital for her and that I was near the point where I could not take care of her properly. My sister-in-law over to help and we got her settled and comfortable. She managed to tell me she knew she was not making sense and was confused. What I did not know is that she had asked the Hospice nurse that day to be moved to the Hospice Hospital as soon as a bed was available.

The following morning the Hospice nurse arrived and told us they had a bed for her. I felt relief but also felt bad. My mom would be leaving her home for the last time. A week before I had told her that I dreaded that moment when she would leave for the last time. She told me that death and life are a series of steps or notches. And told me that when she left the house for the last time not to think of it anymore than that....a notch or a natural step in life. When the ambulance drivers were taking her out that last day she actually grabbed my hand and opened her eyes and in her stupor said, "It is only another notch." She was referring to the conversation we had a week ago...Imagine her-comforting me at such moment. Once she was at the Hospice they took her off the patch and put her on morphine instead her mind cleared. She stopped talking that much and every once in a while could speak or answer questions. She told me that her loved ones where there and trying to take her. She was afraid to go with them. She did not want to leave us. I went down a list of deceased relatives and friends and most of them where in the room. She had told me that her father was in the room and when she tried to talk to her he told her he was there to keep an eye on her and take her to heaven when it was time. In the mean time she was not to talk to him but to us. Our priest came down and we prayed with her at her bed. She tried to cross herself and seemed to relax. He comforted her and told her to go with them if they wanted her to go. After this it was difficult to understand what she was saying. We sat there, kept each other company and held her hand. It was a wonderful relief to have the staff to care for her and us. The night before she died everyone left one by one to get home, get the kids to bed and get some sleep. I couldn't leave, I wanted to share every last minute with her even if she was out of it. I sat there in the dark holding her hand and one of the patients in the room called me over. She said, "What would your mother tell you right now?" I said, "she would tell me to go home, get some sleep and come back in the morning." She told me to listen to my mother. I was exhausted. This patient told me she would watch over her for me. What an angel. I reluctantly left and was back in the morning. It was so sunny outside. This Hospice is on the Long Island Sound. I looked out at the water in her room and saw boats going by, waves hitting the shore and sea gulls flying about. It was a beautiful day to die. My mom was awake and alert. I described what it looked like today. I smiled at her and told her that I loved her. She just stared at me. The nurse came in to clean her up...I went next door to the lounge and almost immediately she came flying in telling me to hurry up...that she was going now. I flew back into her room. Her eyes were closed but she clutched my hand when I held it. Her color got very dark reddish-grey and then the color left her face at the same moment she let go of my hand. I know this sounds corny but I looked up at the beautiful sky and in my minds eye saw her-young, beautiful, happy and pain-free in the sky outside her window. When I looked back down at her face she was just a shell. The beautiful part that was my mother was released. There was no sadness in seeing her like that. She was out of pain. And I was privileged to be there for all of it....from the day she was diagnosed to the day she went to heaven. Like so many people, I wish I hadn't needed to work and could have been with her the entire two years but she laughed and said, "You must think highly of yourself to think I would want to be with you that much!" It has been almost five months now and I have to tell you that I learned more about how to live from her death than anything else. You see, my mother did not let cancer rob her of her life. She said that she lived with cancer-not in spite of it. She took her treatments and followed the nurse's and doctor's advise. She called cancer her blessing and really enjoyed what time she had left. She didn't let her illness spoil any moment that was left-cancer did not win and that has truly been a gift to us. My mom was a retired therapeutic recreation director in a nursing home. She said that she learned about life and how to die from some of the residents there. One in particular taught her a poem about death:

The Beyond
It seemeth such a little way to me
Across to that strange country – the Beyond;
And yet, not strange, for it has grown to be
The home of those whom I am so fond,
They make it seem familiar and most dear,
As journeying friends bring distant regions near.

So close it lies, that when my sight is clear
I think I almost see the gleaming strand.
I know I feel those who have gone from here
Come near enough sometimes, to touch my hand.
I often think, but for our veiled eyes,
We should find heaven right round about us lies.

I cannot make it seem a day to dread,
When from this dear earth I shall journey out
To that still dear country of the dead,
And join the lost ones, so long dreamed about.
I love this world, yet shall I love to go
And meet the friends who wait for me, I know.

1986 - dysphasia stage 3 - removed with laser surgery
1990 - pelvis swelling and discomfort
1992 - pelvic enlargement and tenderness, amenorrhea
1993 - amenorrhea, weight gain
1994 - enlargement on left side of pelvic area (I looked lopsided)
1997 - edema, emotional, angry and fatigued
1998 - fatigue, anger, weepy and lack of concentration, rise in blood pressure
1999 - headaches, fatigue, anger, weepy and lack of concentration, frequent urination at night
2000 - pulmonary embolus, extreme fatigue, comprehension problems, frequent urination at night, acid reflux
2001 - out of breath easily, severe edema, umbilical hernia, problems w/short term memory retention, comprehension and concentration, severe edema
2001 - August, severe abdominal pain in emergency room, CAT scan of abdomen nothing found
2001 - September, Ultrasound performed - Exploratory laparotomy - Endometrioid Adenocarcinoma, Left salpingo oophorectomy. Removal of 10 lb. Endometrioid Adenocarcinoma the size of a watermelon. CA125 taken right before surgery 66, taken after surgery 18.
2001 - Life port inserted (chemotherapy port)
2001/2002 - six rounds of chemotherapy (Carboplatin/Taxol)
2002 - incision hernia
2002 - October 2002 after six rounds of chemotherapy, Abdominal hysterectomy (Cervix - Chronic cervicitis w/ naothian cysts. Endometrium: Benign secretory phase. Myometrium: Adenomyosis
2002 - removal of Life port
2002 - CA125 at 10
2003 - CA125 at 6
2003 - incision hernia (muscles are not holding together after surgeries, meshed)

- Complete body hair loss after third treatment
- Muscle cramps
- Exhaustion
- Depression
- Lack of concentration
- Decision making problems, lack of comprehension of what I read
- Short term memory loss
- Long term memory, problem w/recall
- Hearing and understanding what I heard problems in conversations
- Anger

I had a swollen lymph node in my groin. I had it since May 03 and my ob-gyn was not concerned about it. I had a gut feeling it was worse than it appeared so I sought an opinion of a surgeon, who found another swollen lymph node under my arm. I was scared then. I thought it was probably lymphoma, since my Dad had that type of cancer. A pet scan showed a mass and a spot on my liver and behind my breastbone too.

I was referred by my ob-gyn to a great gyn-oncologist. I had debulking surgery (9 days in hosp. and a long recovery) and 6 mainline carbo-taxol treatments. I did well and my CA -125 went from 400 to 50 in two treatments, then down to single digits (where it still is). The worst problem I had with the chemo were very low counts (especially white). I was hospitalized in March 04 with a severe infection.

After the mainline treatments in May 04, I had to have a surgery for a big incisional hernia (repaired with mesh). Then I had 12 more taxol consolidation treatments. I finished with those in March 05 and now am "dancing with" NED and feeling very good. I have a lot of energy and feel normal. My hair is starting to grow and it seems strange after 18 months of baldness. The best part is getting "stubby" lashes back and a little brow. I have changed my diet and eat a lot of natural fruits, grains, soy and veggies, and no meat and take some supplements.

I took fertility drugs, never gave birth (adopted my beloved daughter), and had a history of pelvic pain. Realizing I was at risk for ovarian cancer with the first two factors, I had always been pro-active with yearly ultrasounds and watching for little signs. I told my gyn about my fear and he said not to worry, there was no proven link to fertility drugs and ovca.

One year, a septated or complex cyst on my ovary showed up on the ultrasound. I was devastated to read on the Internet that these type of cysts could be the genesis of an ovarian cancer and had to be further evaluated. I spoke to my gyn and he said not to worry, he was certain it was just two cysts together and they are rarely cancerous anyway.

Eighteen months later, tired of the pain, the heavy periods, and most of all the worry of cancer, I requested a hysterectomy from my gyn. He said, "the chances of you having serious complications from surgery are far greater than your odds of getting ovarian cancer". I was lulled into complacency.

Six months after my hysterectomy request, the pain got worse. Thinking it was my stomach, went to an internist, and she ordered a CT. CT showed two large bilateral masses on each ovary. I was ordered back to the gyn who took an ultrasound and told me they were "pedunculated fibroids" or uterine fibroids on stalks which floated out of the ovary. I don't know who is a bigger fool: him for suggesting it or me for buying into it.

Anyway, after a follow-up ultrasound, 4 months later, the "fibroids" on my ovaries had grown so fast that he told me I had to have a hysterectomy and only then did he order the CA 125 test which was 3170! The end result was "apparent stage 2b but possibly borderline 3a ovca".

I opted for the IP delivery but could only tolerate two doses out of the six. The remaining four were infused. I finished my last treatment just over six months ago and feeling much better. On my last visit my CA 125 was down to 4. I pray it stays that way.

The moral of my story if your reading this and don't have cancer:

1) think twice about fertility drugs. Their link to cancer is very strong but none of the doctors who treat infertility will ever play it up...there is just too much money to give it up.

2) Investigate thoroughly all complex and septated cysts. OVCA in stage 1 is completely curable 95% of the time!

3) Try to see a gyn who is not delivering babies-otherwise they are so caught up in being the heroes in the maternity wards that they still have their head in the clouds when they have to see woman presenting with health issues.

4) Don't JUST listen to your body (we all know or have heard ovarian cancer whispers) make sure the doctor is listening too. Don't get lulled into the "great, the doctor says I'm ok" mode like I did.

5)Get yearly ultrasounds AND the CA 125. Lie and say you have pelvic pain if that is going to get them to agree to the test! Hopefully, one day ovarian cancer will get America's attention as (thank God!) breast cancer has we won't have to connive to get tested. As of today, however, other than the "ovarian cancer whispers" message (not sure how powerful or useful that really is anyway) there is nothing.

For all of you surviving out there...keep up the great work! I feel all of us affected by this bastard disease have a cosmic kinship of some sort. We are all members of the same club, shaking our heads and wondering how we got here, but nonetheless, here we are, ready or not, each trying to get by in our new skin, our new persona as "person having ovarian cancer", the best we can. Although I have a great support system, no one but no one, as I'm sure you can all relate, can understand how this feels...to be stripped of so much, so fast.

That being said, I resolve to live my life to the absolute fullest, love everyone a little bit more, be kinder, appreciate nature, strive to be as stress-free as possible, appreciate and take care of my body after all it has had to endure- through nutrition and exercise, and thank God daily for all my blessings.

When she was 46 years old, a very tragic thing happened to her. On her way walking to church one Sunday morning, a man attacked her and she was badly beaten. She either had a seizure during the attack since she also was an epileptic or she was unconscious, but she didn't have much memory as to what happened. He may have also raped her since we found her underpants in her dress pocket. The beating was so bad that we could hardly recognize her. One eye was permanently damaged. Her attacker was never found because her memory was so poor. A few months after the attack, we noticed that her stomach seemed swollen. We thought it would be unlikely due to her age, but we wondered if she could be pregnant if her attacker did rape her. We took her to the doctor and found out it was actually worse than that. She was diagnosed with advanced inoperable ovarian cancer.

Over the course of about a year, I watched Aunt Katy slowly deteriorate due to this horrid disease. Even with all this suffering from the beating and the cancer, she never complained and continued to praise her Lord just as she has always done since she was a child. Nothing rattled her. If anything, all the suffering seemed to make her faith stronger. The night that ovarian cancer finally took her, she told us earlier in the day that her Lord was waiting for her and her mother was waiting for her there with him.

For many years I was very angry and bitter over what happened to Aunt Katy in her life. I could not understand why she was so faithful to her wonderful Jesus and she was allowed to be victimized and suffer such a death. I was so angry at times that it was almost unbearable. Over time I came to believe we are all here for a reason and we all have lessons to learn and to be taught. I believe Aunt Katie was here to show us how to love and how to forgive because she was a true example of what a good soul should be. Even with all that she suffered in life, she never had a bit of hatred or bitterness. Look at all that happened to her. She was born normal but suffered brain damage as a small child which made her intelligence that of a nine year old. The brain damage also left her epileptic and she suffered many seizures even with medication. She never had the joy of getting married or having a child. She spent her whole life praising and loving church and the Lord. At 46 years old she was horribly attacked and a few months later had terminal cancer which took her life within a year. It alls seems so tragic and would break even the hardest of hearts, yet she was the happiest person I have even known. She never let anything steal her joy for life, not tradgedy, not pain, and not disease.

“OUR SWEET GIRL”
Brittany Waldrep’s story
As told by her sisters, Megan and Stacy

In the winter of 2004, a large tumor was discovered on Brittany’s left ovary during a sonogram. Brittany had a CA-125 test; the results were normal. Later, the tumor ruptured as it was being surgically removed. Biopsy results showed that it was malignant, stage I, grade one, ovarian cancer. For the next two years, Brittany was a diligent patient, visiting her doctors every three months for check ups and regular CA-125 tests.

In the spring of 2006, she began to have stomach pains. Unable to find a reason for her distress, a laparoscopic examination was performed on May 23rd. The original cancer had metastasized over the last two years. Within a week, the cancer began forming blockages in her intestine; additional surgery was performed to relieve her pain. This left our Brittany with a colostomy and an open abdominal wound. Her pain continued to grow worse and was often unbearable. But, she desperately wanted to live. We were told, correctly, that this cancer would probably be unresponsive to chemotherapy. Still, she endured several rounds. Brittany died less than two months later, on July 20, 2006.

We must draw attention to the fact that there is no reliable test for this "silent killer”. A CA-125 test measures a protein found in blood that may be higher in some women with ovarian cancer*. Unfortunately, it is only accurate in detecting stage I ovarian cancer approximately 50% of the time**. When Brittany's CA-125 level began increasing, about six weeks prior to her May 2006 diagnosis, the cancer was already in the later stages. Her ultrasound, Pap test and CT scan initially provided what any doctor would call "normal" results. Brittany listened to her body when it whispered that something was wrong; but because there is no reliable test, her physicians were unable to immediately detect the initial or the metastasized cancer. This silent killer is responsible for taking the lives of thousands of women every year. Only 45% of women diagnosed with ovarian cancer will live more than five years*. We cannot sit back and wait for survivors of ovarian cancer to take the lead in seeking a test to accurately indicate the presence of cancer; there are too few!

Prior to her diagnosis, Brittany was enjoying her first ‘real’ job, post-college, and saving to buy a house. She was a great daughter, a loving sister, and devoted aunt. Britt loved her many friends, and was always ready to go out to eat, to the lake, or to the beach. But she was taken too soon, and her loss has left an empty place in the lives of all of those who loved her.

Brittany Waldrep died in the early morning hours of July 20, 2006, a couple of months before her 25th birthday. Please join our family and friends and the Norma Livingston Foundation to raise money to fund research for ovarian cancer. Additional tools to detect and fight this cancer are so desperately needed.

However, when I got diagnosed in July 2005 with endometrial, ovarian and bladder cancer, I did what everyone does: I fell apart.

You see, my family has Lynch Syndrome, the colon cancer gene. What most women don't know is that when you have it, you also have a much higher percentage than the normal population of getting endometrial, ovarian, and bladder. I got the "trifecta," three separate cancers at the same time.

I spent my 40s with recurrent UTIs, increasing pain, clotting, anemia, and a gyneocologist that ignored the fact that two of my brothers had colon cancer before age 40, and kept telling me I was in "perimenopause." At 48, I ended up in the emergency room with a kidney stone and severely anemic. The urologist got the stone out, walked into my hospital room, and told me to find a new gynecologist the day I was released. I had "something else going on," but as a urologist, he felt he couldn't diagnose.

I went to another gynecologist, who did my surgery, and said things look good. Two weeks later, I get a phone call. Endometrial cancer and Ovarian cancer and a referral to a gynie/oncologist. Another operation and I have Endo Stage IIIC, Ovarian II, and Bladder II.

Chemo and radiation follow. God, I was sick. On top of it, my brother, after not having a recurrence in 20 years, was told he was dying. He died a week after I finished chemo.

It was a horrible horrible time. But, I had very caring doctors and nurses, I was able to spend long afternoons with my brother, my employers were very good to me, my friends and cousins and family all pitched in to help us.

Today, I am one-year cancer free. I have a full head of hair. I am back working full-time. I am healthier. Will it recur? I don't know. The only benefit of Lynch Syndrome is that it has a higher cure rate and longer time between recurrences, in general. I look at another brother, cancer and recurrence within 17 years, and still going strong. I hope I am like him. Women, realize that if you have indications of Lynch Syndrome, do not let your gynecologist tell you increasing pain and clotting is perimenopause. Indicators of Lynch Syndrome are: multiple cases of early colon cancer across a generation and/or colon cancer with female reproductive cancers.

The Journey
The day after I arrived, she had scheduled an appointment with her "Primary Provider". My objective was to convince her to refer my Mom to a specialist and order some diagnostic tests. She dispassionately looked at my Mom's distended abdomen and discounted her 3-month urinary infection, but did relent and suggest that we contact a gastroenterologist and wrote a script for an xray and an ultrasound. Why don't doctors give referrals anymore or have their staff set up appointments? It is all so confusing to have these responsibilities on the shoulders of the ailing patient! I talked our way into an appointment with a gastroenterologist two days later, but they explained that not much could be done if the diagnostics weren't available. On the warpath for a radiologist who could perform the ultrasound ASAP. . . She had one by the end of the day. Constant coordination between doctors and labs suddenly becomes your job because they are busy or inefficient or short-staffed. I had filled up an entire legal pad by the end of the first week. . .

First Evidence
I talked a woman at the radiologist's office into reading me the results of Mom's ultrasound over the phone, scrambling to scribble down every word. It was ascites engulfing her pelvic area, spleen, liver, and gallbladder. And there were tumors on both ovaries. We wondered what was more important the tumors or the ascites and how would we manage to pronounce ascities with a long i. . With the gastro appointment for the next day, I knew what to expect, but I wanted to research the implications so that I could ask the right questions. The gastro man was late coming in that morning and once he came into the exam room, he acted as though he were on a timer to dispense with us within 4-5 minutes. He barely examined my Mom, who, by this point had swelling in her legs and feet. I continued to ask him questions as he was trying to leave the room - feeling like a reporter trying to get a quote from a movie star. . . Oh he did write us a script for the CT scan and the paracentisis and bloodwork too. And he suggested that we find a gynecologist.

Looking for Compassion
Mom had never seen a gynecologist in her life. This certainly made it difficult to squeeze our way into a gyny ASAP without a track record. One "women's facility" offered us an appointment in August. . . Finally I talked with a nurse at a gyny facility that couldn't see us and she referred me to Dr. Schwartz. But I wasn't able to get Mom into see him until ten days - too long for me and for her. So I kept pestering and had her medical data sent over so that he could see how important it was for us to come in. We were in within five days and once in the examining room, he performed the most extensive exam that any doctor had provided to date, including a pelvic. His white mop of hair and wrinkled face emerged at the conclusion. As he made his way to the door, he secretly motioned to me to follow, while Mom dressed.

The Conclusion
Sitting across his desk in a leather chair, quaking, I heard him tell me straight out that your mother has ovarian cancer - how much do you want her to know? Everything, I said as I left the room after a few questions to fetch Mom. It had been ten days since I arrived.

The Beginning of the Treatment
Mom was checked into the hospital a few days before her scheduled operation for hyperelementation and also because a scheduled colonospy was stopped cold at the sigmoid and a barium test showed interaction with her colon. Mom handled it all in stride. All the poking, blowing veins that were highly visible, but supposedly thin. The endless cleansing treatments, a pre-op paracenticus, drinking regimens, hoppling to the bathroom with an IV pole we named Trixie.

The Operation
A five-hour, two surgeon operation extracted uterus, ovaries and their appurtenances, fallopian tubes, apron, appendix and about 22 cm of bowel. Thank God that she did not have to have a colostomy - the surgeon, who was part of Dr. Schwartz' team was able to attach the two ends.

The Recovery
I brought Mom home from the hospital one week and five hours after we arrived. She wasn't on solid foods yet, but she was in good shape and I knew she would sleep much better in her own bed, instead of that torture device that seemed to swallow up my Mom in the hospital.

The Future
Mom has a week or two of grace before the chemo starts. The oncologist suggests a course of Paclitaxel and carboplatin, a combo that many of these "Personal Stories" have encountered. I am reading up on them, but I am frustrated because I know that my Mom is different: she's a 99 pound eighty year old. What kind of reaction can I expect? Do I need to be with her 24/7 or just through the first ten days of a chemo treatment?

In February 1993, I had a total hysterectomy (including ovaries) to relieve excessive bleeding during menstruation. Pathology indicated that all removed tissue was negative for cancer. I had not begun menopause, and I was 50 years old; after surgery, my gynecologist put me on Hormone Replacement Therapy (HRT). After my cancer surgery, I switched to NHRT (natural hormone replacement therapy…soy, tofu, etc.).

I have always been an extremely healthy individual and take NO medications, only vitamins.

MY OVARIAN CANCER DIAGNOSIS:
In May 1998, I had persistent constipation and a noticeable increase in my abdominal girth. I visited a gastroenterologist. He examined me and ran fecal matter tests and blood tests. These were negative. He indicated that I probably had Irritable Bowel Syndrome (IBS) and prescribed Prilosec®. I asked for further testing.

He had a pelvic X-ray done, and it was negative. He told me I had IBS. I requested further testing. A nuclear liver scan was done and was negative. He told me I had IBS, and his nurse practitioner talked to me at length about IBS and gave me some literature on it. I could not agree with the diagnosis because of my increased girth. (I couldn’t wear any of my clothes that buttoned at the waist.) I requested further testing.

The doctor and nurse practitioner were getting a little frustrated with me. They reluctantly agreed to have a pelvic and abdominal CT-scan done. This test did not reveal a tumor, but it did show (abnormal) fluid in my abdomen. This fluid is called ascites. I had it drained; analysis revealed cancer cells in the fluid.

They still could not tell me where my cancer originated and wanted to refer me to an oncologist.

I was not familiar with any cancer doctors/treatment in the Naples FL area. Since I’m from Michigan and my daughter lives only ten minutes from the University of Michigan Cancer Center, I opted to go there for treatment.

Before I left Naples, I had the gastroenterologist run a series of blood tests to narrow down where the cancer might be. One of those tests was the CA-125 blood test (for Ovarian Cancer). Normal is 0-35; mine was 754. I didn’t see how I could have Ovarian Cancer when I hadn’t had ovaries in many years! That’s when I learned that all women are still at risk, even if they’ve had their ovaries removed, for Primary Peritoneal Cancer. The cells from the ovary and from the peritoneum originate from the same stem cell; even after you’ve had your ovaries removed, you still have cells in your peritoneum that are essentially ovarian in nature.

MY OVARIAN CANCER/PRIMARY PERITONEAL CANCER TREATMENT:
Between June 1998 and June 1999, I had six surgical procedures, six chemotherapy treatments, and 36 Whole Abdominal Radiation (WAR) treatments.

During my initial laparotomy surgery, the U of M gynecologic oncologist removed my omentum (which was caked with tumor) and determined that my cancer had not spread to other organs sufficiently to require they be removed. There were cancer cells attached to the outside of my organs, but these were too small and too numerous to remove surgically. It was determined that I had a STAGE IIIc, Grade 1 cancer.

A few weeks after surgery, I had a port implanted in my arm and began chemotherapy to destroy the cancer cells remaining in my abdomen. After two chemo treatments in Michigan, I returned to Naples and finished my chemo treatments with a medical oncologist. During this time, I had surgery to remove the malfunctioning port from my arm and another surgery to implant a double port in my chest. Chemotherapy treatments were completed in October 1998 and I was pronounced "in remission" with No Evidence of Disease (NED).

I chewed on this for awhile and did some research on my own. I decided to have a Second-Look Surgery (SLS) to determine whether any cancer cells survived the chemotherapy. This procedure is controversial and some gynecologic oncologists do not believe it is worthwhile. However, my Florida gynecologic oncologist agreed that I was a perfect candidate for such a procedure. He did this surgery on me in February 1999. He took many biopsies and abdominal lymph nodes. All were negative for cancer…except two, which revealed microscopic cancer cells.

This doctor suggested two different treatment possibilities for consideration. I flew to Michigan and got a second opinion at U of M…something entirely different than what was recommended to me in Florida. So, I flew to Houston, TX to the M. D. Anderson Cancer Center; I was examined by a gynecologic oncologist, and my case was presented to a panel of seven doctors for their treatment recommendation. They recommended something entirely different! Now I had four different treatment options recommended by three different cancer centers in three different states. What to do, what to do.

I did more research on my own and weighed all my options. I decided to take 36 Whole Abdominal Radiation (WAR) treatments from a radiation oncologist. Those treatments were completed in June 1999, and I have been in remission ever since. Following completion of WAR, I developed a lymphocele in my lower pelvic area that pressed on a nerve feeding my leg and caused great pain; this lymphocele was surgically drained and has not caused any more problems.

MY ACTIVISM:
Shortly after completing my WAR treatments, I decided I just had to do something about the general lack of knowledge about Ovarian Cancer. Having done a lot of reading and research on the subject, I felt that if I had all this information and didn’t share it with other women, then shame on me. I learned all I could about various non-profit organizations pertaining to Ovarian Cancer and decided to form a local Division of the National Ovarian Cancer Coalition in the fall of 1999. In early 2002, we resigned from NOCC and formed the Ovarian Cancer Alliance of Florida-Gulf Coast, a 501(c)3 non-profit corporation. Our efforts are primarily in southwest Florida and our mission is to save women’s lives through Ovarian Cancer awareness and education.

I speak to women’s organizations throughout southwest Florida (and in Michigan when I am vacationing there) about Ovarian Cancer and distribute literature to all attendees. There is no fee for this service, but we do request donations to assist us in printing our literature. We are a non-profit 501(c)3 organization, so donations are tax deductible.

We participate in Health Fairs (at a booth with literature to disseminate to attendees), and I have done several television and radio shows on the subject.

We are also working on a project to print Ovarian Cancer Risks / Symptoms cards for placement in doctors’ offices and to be provided to employers for distribution in paycheck envelopes for their employees.

Our Southwest Florida Division of NOCC has obtained Proclamations declaring September as Ovarian Cancer Awareness Month from the following: City of Naples, Collier County, Lee County, and the State of Florida. We have created a display of these for use at Health Fairs and at our events.

Also, we have created a display of famous women who have had Ovarian Cancer. This will be exhibited at all of our events. We believe this will encourage more women to learn about Ovarian Cancer and increase the possibility of early diagnosis.

Please feel free to call me with any questions.

My wife, Cathy, 53, has a history of cancer. Her mother died of breast cancer at the age of 32, and my wife had colorectal cancer at the early age of 38. Fortunately, surgery alone was able to take care of the one tumor, sparing her the effects of chemotherapy and radiation.

In December of 2000, Cathy noticed that her legs were aching and tiring quickly; my mother, 81 at the time, could last longer when shopping. Cathy was not overweight and used a Nordic Track exerciser regularly. Soon she noticed that her left leg was swelling slightly. We immediately went to the doctor and a CAT scan was performed, but nothing turned up. Other tests also revealed nothing, and the conclusion was drawn that the swelling was lymphedema caused by old scar tissue from the abdominal surgery she had 16 years ago! We found that hard to believe and got numerous more tests and opinions, only to come back to the same place.

The lymphedema spread to her abdomen and other leg, causing swelling there as well. Finally, about a year later, a CAT Scan finally revealed a tumor, and a biopsy determined that it was malignant. Further testing revealed she was in Stage III.

At about the same time, we learned through reading a book on cancer treatments, that there is a blood test called AMAS (Anti-Malignan Antibody in Serum), that will reveal the presence of cancer in the body, sometimes as much as 24 months PRIOR to clinical evaluation (such as a CAT scan), with great accuracy. We were never advised to have this blood test performed, and found that many doctors, including oncologists, do not know of the test. We believe that had we known about this test earlier, we would have had a much earlier diagnosis, making the disease much easier to treat. It is now August, and she is going to begin chemotherapy next week (Taxol and Carboplatinum), and only time will tell the results. The treatment would undoubtedly have been more effective a year ago, when the symptoms were first beginning to reveal the presence of cancer.

Unfortunately, we did not know about the AMAS test in time. Hopefully, others will learn the lesson from us and have earlier detection of this deadly disease. To find more information about the AMAS test, you can type AMAS into a search engine or go to www.amascancertest.com The laboratory that does the test is located near Boston, Mass., and has a toll-free number: 1-800-9CATEST

Finally July 7,2008, when I could barely walk from the pain, but was still soldiering on at work, I went to my primary care, who sent me immediately to a CT scan (run, don't walk) and then to my OBGYN.

My OBGYN was marvelous, and after some more tests, she convinced me to have surgery. Surgery couldn't be scheduled until July 31 because of schedules and vacations. I wonder if this month of delay made any kind of difference.

In any case, the pain was also becoming intolerable.

July 31 my husband dropped me off at the hospital (by myself) and I got admitted etc. Fought with the CNA over whether I could take my glasses into surgery. I finally had her get another Nurse and I gave them a piece of my mind. They said normally people don't come in alone and I reminded them my husband left me at the door and I would be alone until he came back around 9 p.m. So they "let" me have my glasses. JEEZ. When I told my doc about this, and surgery people (in the pre op) they were like "what was that all about, glasses are no problem, we just put a sticker on the case."

Even with the pending surgery, pain and fear, all I could think about was how I was planning on dealing with the customer service issues when I got out!

Surgery revealed grapefruit size ovarian tumor - malignant and big cyst -not malignant - on other ovary. Tumor had to be peeled off my bowel and bladder. No wonder I couldn't "go" and was in pain. T.A.H., pus appendix (sob!) omentum, etc. all gone. I never had children, but it was now all gone. Pathology pretty darned yuccho. Stage III. Wondering would it have been different if surgery were sooner? Wondering why nothing found at my annual exam in April? Wondering why on earth I agreed to stop taking bc pills - the problems began nearly a month after I stopped taking them (to see if I really was premenopausal).

By the way, I have spoken to other women in similar sitch who got the cancer within a few months of going off bc pills at doc request. Hmmmmm.

In hospital 6 days. Long recovery. Nearly 10 weeks before I went back to work.

Part 2.

Returned to work after 10 weeks, after Total Ab. Hyster. July 30. Pathology a bit scary. Began Taxil/Carboplatin in August 25, less than 4 weeks after surgery. Made me sick, but the good thing was I had medical leave; time to learn how to deal with it. 6 mos of the taxil and Carbo. When I went back to work in October, I was still going through chemo. I would do the chemo on Thursday, work on Friday (they pumped me full of steroids so I didn't crash until second day after chemo.) Crash Sat and Sun and Monday and then drag myself to work on Tuesday. I am a pretty tough cookie. Even when I got really weak, I kept going -I don’t like to bother the doc. Managed to get through and keep working. One transfusion. The weakness was the worst part.

Jan 2009, trying to decide next step. Decided on a break. Doc offered blind study. Hmmmm, possibly no treatment in the study. Hmmmm. Husband didn't want me to do more treatment - he wanted my time and to take trips, etc. (Mercy - are men selfish or what?)

Doc said I had twelve weeks to decide, so I took that time to get my strength back. Finally I ask the doctor: "Absent the study, what would you recommend to someone with my pathology and family history." Aha - must know how to ask the question! She said. "More chemo. Taxil 12 mos. Will lose hair again."

By the way, hair was never an issue. I bought wigs but loved bald. Easy care. Never bothered me, just bothered the hoi polloi of West Hartford. Parochial little town!

Returned to work after 10 weeks, after Total Ab. Hyster. July 30. Pathology a bit scarey.Began Taxil/Carboplatin August 25, less than 4 weeks after surgery. MAde me sick, but the good thing was I had medical leave time to learn how to deal with it. 6 mos of the taxil and Carbo. When I went back to work in October, I was still going through chemo. I would do the chemo on Thursday, work on Friday (they pumped me full of steriods so I didn't crash until second day After chemo.) Crash Sat and Sun and Monday and then drag myself to work on Tuesday. I am a pretty tough cookie. Even when I got really weak, I kept going -I dont like to bother the doc. Managed to get through and keep working. One transfusion. The weakness was the worst part.

Jan 2009, trying to decide next step.decided on a break. Doc offered blind study. HMMMMM. Possibly no treatment in the study. HMMMMM. Husband didn't want me to do more treatment - he wanted my time and to take trips, etc. (Mercy - are men selfish or what)

WARNING SYMPTOMS OF OVARIAN CANCER

Contact your MD if you develop one or more of these symptoms and they persist for 2-3 weeks:
-Abdominal Swelling/Bloating/Clothes Too Tight
-Abdominal/Pelvic Pain or Pressure or Feeling "Full"
-Gastrointestinal Symptoms (such as gas, indigestion, nausea, or changes in bowel movements)
-Vaginal Bleeding or Discharge
-Urinary Problems - Urgency, Burning, or Spasms
-Fatigue and/or Fever
-Pain During Intercourse
-Back Pain
-Difficulty Breathing

I encouraged her to get a second opinion immediately. She also had a slightly elevated CA-125 but less than 30 which is why her GYN felt there was no cause to be concerned. He was insulted that she was seeking another opinion. The second opinion was that it was highly likely that she had ovarian cancer. So she got a third, it repeated that she likely had ovarian cancer. Her Gyn still was reluctant to believe that and insisted it was only a pelvic infection. She boldly insisted on an exploratory surgery and he agreed to do it reluctantly. It was scheduled for December 28, 2004. Her Gyn did not have an oncologist present for the surgery, tried entering 4 different places and could not... she was full of cancer. They determined it was ovarian cancer cells, and also outside of the ovary, tubes, and wall lining. He said he was sorry, she said, "I accept your apology, where do we go from here." They began the chemo with Taxol (she reacted to) and Carboplatinum, later Taxotere and Carboplatinum and she had a full hysterectomy about 6 weeks later. The rest of her story is a battle with many ups and downs. If anyone has any questions at all there is nothing that I will not answer. You can ask me anything and I will tell you how our situation went. Sometimes we all just wanted more info. Hours before her death something I read on a forum like this actually helped me to deal with those last moments and I appreciate the honesty and frankness of that poster. Her actual passing was beautiful, special, and supernatural.

The last week of August I noticed a pain on the right side of my abdomen. At first I attributed it to pulling a muscle in Yoga class. Then, when it didn't go away, I decided I had finally eaten a hole in my stomach with too much Diet Coke. The pain made me exhausted very quickly. I could barely get out of bed for two days. I tried to get an appointment with a gastroenterologist, who couldn't see me for six weeks. While telling my mother about this on the phone, she said, "it sounds like a cyst. Go see your gynecologist." My mother's instincts could very well have saved my life. It wouldn't have occurred to me because I had never had gynecologic problems -- or any physical health problems at all, for that matter.

My gynecologist wanted to see me right away, but was puzzled. I'd had a normal "annual" eight months earlier. When I saw her on Friday before the Labor Day weekend, she ruled out a tubal pregnancy, took some bloodwork to see if I had appendicities, and ordered a transvaginal ultrasound. When I had the ultrasound, I could tell by the expression on the tech's face she was not happy with what she saw, but she wouldn't tell me anything.

My gynecologist got the report from the ultrasound back the Tuesday after Labor Day. She asked me to repeat the ultrasound. (When the ultrasound was repeated, the mass they had found on my right ovary had grown from eight to twelve centimeters, in less than a week's time). Then she said she wanted to take another blood test. I asked her for what. She said a CA-125. I knew what that was because, years ago, I had read Gilda Radner's book about ovarian cancer. I asked her, do I have ovarian cancer? She said she didn't think so, I was too young for that, this was just a precaution.

It took another week for the CA-125 to come back. It was elevated, at 203. (35 or under is a normal reading). My gynecologist told me I would need to have surgery, but she could not do it herself, because, if there is any possibility of malignancy, a gynecologic oncologist should do the surgery.

Through the friend of a friend, I got an appointment with the gynecologic oncologist for the very next day, Wednesday. After seeing me and viewing my records he scheduled the operation for Friday morning (less than 48 hours later). On Friday September 12 my ovaries, uterus, cervix, fifteen lymph nodes, and omentum were removed. The cancer had not spread to any other organs. But my lymph nodes appeared inflamed, which led the gynecologic oncologist to make a tentative Stage 3 diagnosis. However; when the pathology report came back, the lymph nodes turned out to be negative for cancer and he revised the diagnosis to Stage 2c. The cancer was also Grade 1, which is the cell that responds most effectively to standard treatment. I had finally caught a couple of breaks.

My gynecological oncologist handed me off to a medical oncologist for six cycles (one every twenty one days) of taxol and carboplatin, the standard chemo treatment for ovarian cancer patients. I had the first treatment five days after surgery, before I left the hospital. The medical oncologist felt my cancer was actually Stage Ic, which was an even better diagnosis than the IIc.

After the first treatment my CA-125 fell to 19.4, within the normal range. After the third treatment it was only 2.5. It has bounced around between 2 and 6 ever since. After my fourth treatment my doctors gave me an option to do two extra cycles, for a total of eight full dose treatments. I decided to do them. However, for the seventh and eighth chemo we had to replace the taxol with taxotere because the neuropathy (numbness) in my hands and feet were getting too severe. I finished chemo on Feb. 11, 2004 and the week after had a normal CAT Scan and Mammogram. At my three month check-up the end of April my CA-125 was 4.6.

As far as treament went, for me, the mental strain was much harder than anything I went through physically. Even though I was ultimately diagnosed at a much earlier stage and grade than most women with ovarian cancer (80% are Stage III at diagnosis) it was many months before I was convinced death was not imminent. This was the worst part of the whole experience. The physical side effects were nothing compared to the psychological ones, but here they are. Because of the "instant menopause" due to surgery I had lots of hot flashes/loss of libido. I lost all of my (waist length) hair after my second chemo treatment and had a lot of neuropathy and fatigue, and shortness of breath from lower than normal red blood cell counts (anemia). Of course, I was very irritable. Steroids are given in combination with chemotherapy and these blew me up so that I looked like one of those roly poly clowns that roll around on the floor like little babies play with. However, because of the drugs they have nowadays to m

My case was atypical from the beginning until now. Most women with ovarian cancer do not have pelvic pain as a symptom. My doctors still do not know why I did. I was one of the ten percent of women who were diagnosed "early" -- Stage I or II -- (eighty percent are Stage III and ten percent are Stage IV) and also one of the lucky ones with Grade I tumor, which is most responsive to the standard chemo. I did not have any of the known risk factors. So, it is probably not good to rely on my story as any kind of benchmark or guideline. But always, always listen to your body if it does not feel "right". Looking back on it I probably did have some early "symptoms", but I attributed them to being forty and probably being peri-menopausal -- never did I think "ovarian cancer"! I was tired all the time for about two years before my diagnosis (but arent women with young children ALWAYS tired?) Once I ended up in the ER in the summer of 2002, about fifteen months before my diagnosis, because I couldn't stop

I had my surgery, April 1991, I took 4 massive chemo treatments, a month apart, of Cysplatin, and Cytoxin, and my blood counts and all were so low, I just could not tolerate anymore. I had my second look surgery, which was not good. I was then scheduled for 38 radiation treatments at the Cancer Center in Montgomery, Al. Dr. Greg Patton was my physician there, and I was able to tolerate 30 of those.

I have gone regularly for my checkups, kept up with my CA125, and as of now, I have made my 10 year anniversary date in April 2001, and continue to be cancer free.

No other female in my family has had a history of Ovarian cancer, I have had 2 children, I took birth control pills for 5 years or more also. My grandmother and an aunt had colon cancer.

I want to share with you the early symptoms of ovarian cancer which I experienced that you may want to send to your family and friends via the Ovca Alert at the end of my story. I recognize those symptoms may be different than yours, but at least this is something.

A regular check-up in July 1991, just six months prior to the initial surgery (February 3,1992) and discovery of the cancer, did not reveal an enlarged ovary or anything unusual. About three months later after the check-up (October 1991), I found myself needing to urinate again several minutes after I thought I had emptied my bladder (urinary frequency and urgency). But we had been down to the Gulf coast and I believed that I had picked up a little bladder infection from the water down there. I was also dealing with an allergic sinus drainage by drinking large amounts of fluids and thought that was contributing to the urination problems. A test for an infection in the urine was negative.

The rest of the symptoms I put down to simple stress and a hectic schedule. I had a minor backache. My back below the waistline was tense and tired after a long day at work, but weekends and resting at night along with an occasional aspirin seemed to relieve the mild muscle pain. After the diagnosis of a basketball-size tumor, I remembered how much like pregnancy the backache was. I also had a bloated feeling, a feeling of gaining weight, particularly around the middle, during the late fall ( 4-5 months after the normal check-up). The expanding waistline was making it difficult to button some of my skirts. In response to that feeling, I began to eat less of the fattening holiday goodies.

In mid-January 1992 (6 months after the normal check-up), still feeling fat, I found, much to my surprise that I had a sudden weight loss of ten pounds. That kind of weight loss is very unusual for me even on a diet, but I didn’t take it as a negative happening. For once, a diet had worked and I had shrunk my stomach. My major symptom was growing fatigue. All through the fall I was working long hours and just could not get enough rest. Even with long naps over long weekends, I was still exhausted. The weekend before the cancer was discovered, I only had energy for about 1-2 hours and then I would have to rest for 30-45 minutes. But again I thought I was just stressed from being a mother, a wife, volunteer and employee. There was no change in bowel habits, no change in menstrual periods or flow, and no real pain of any kind.

In late January 1992 (7 months after the normal check-up, I finally felt a small knob in the umbilical (belly button) area, but only when I coughed. This is not the usual way for someone to discover this cancer. At the point of discovery, the cancer had spread from one ovary to the uterus, the other ovary, a 12" long portion of the bowel, a portion of the bladder, and possibly the lymph nodes. And yet this ovarian cancer was considered to have been discovered in the early stages! When it is discovered in later stages, the symptoms are usually abdominal pain and digestive disorders.

This cancer can occur at any age from teenage years onward, but the chances increase with age. It can run in families (5-10% of the cases) or as an isolated case.

Believe it or not when the doctor first asked me if I had any problems or symptoms, I honestly said no. In my mind there were no unusual symptoms that could possibly be related to the mass in my abdomen. After all, stress and fatigue are a normal part of a busy woman's life. It took me 3-4 days after the diagnosis before I realized that all of the above feelings were related and had been building/getting worse since early fall. All of the symptoms had some physical basis related to the cancer. If there is some good in this story, it will hopefully alert you to listen to your body and not to attribute too much to simple stress.

Cindy Melancon is the founder/publisher of Conversations: the International Newsletter for Those Fighting Ovarian Cancer. To subscribe or learn more visit her website www.ovarian-news.org. Or email the newsletter at Ovcanews@aol.com.

I was diagnosed with breast cancer with mets in 1991, had a modified radical mastectomy as well as chemo and radiation. A single mother at the time I had a hard time focusing on my disease but was cured anyway, my youngest child was fifteen. I was closely monitored for breast cancer and was getting yearly endometrial biopsies due to thickening caused by my use of Tamoxifin. In 2005 I had extreme abdominal pain after doing yardwork (wheelbarrow with cinderblocks) and thought I had a hernia. A CT showed cancer and I had Sub Total Abd Hyst/BSO/Omentectomy with huge number of cancer cells in the washings.

I've spent many months concentrating on vitamins, and am now tired of taking them. My oncologist told me yesterday that the only thing they advise survivors to take is calcium with Vitamin D. I had added fish oil, gingko biloba, biotin, multivitamin, and other things to my repertoire and it was a chore every day to take them all.

I acquired loss of hearing from the chemo. That has still not returned. I may have to get a hearing aid, which depressed me considerably last fall. But I'd like to hear movies and TV again better. Not as I used to. That's another thing I've been accepting. I'll never be my "old" self again. But perhaps that's not a bad thing.

I treasure time with my family more now. I realized that if I were told I only had one year left, I wouldn't want to travel or go live in Europe as I've always said I would do. I would want to spend as much time as possible with my husband, son, and daughter. I made a point this year of traveling to different states to see extended family, and I now am eager to go for walks with my husband (to get that Vitamin D and the exercise), out for coffee or shopping with my daughter, and out for dinner or making dinner for my son.

I still put pressure on myself to be perfect, but am trying to remember that that's an impossibility to begin with and my family already thinks I'm perfect. So, when I want a lazy day, like today, of nothing but reading a great book, drinking tea, and snacking, I'm letting myself do it and trying to let go of the guilt.

Anyway, there is light at the end of the tunnel for those of you going through the initial diagnosis, the surgery, the treatment, the recovery--it does all get better. The nausea, not wanting to eat, trouble with hydration, constipation, insomnia--all disappears. The "late" side effects that come afterwards--for me, neuropathy, joint pain, hearing loss, and weight gain--are all bearable and, in time, become part of you. The joint pain was terrible for months, but now it's gone. I am now finally feeling as if my loved ones' voices and my voice sound normal again, even though I know my hearing loss has changed them. I don't notice it now every time I speak or listen, and that's a good thing. I gained two dress sizes after chemo ended, but my oncologist is happy I've gained weight. She's be more concerned if I lost it. The neuropathy has dissipated some, but not enough.

I am deeply sorry for the two young girls who lost their mothers at an early age from ovarian cancer. I lost my mother as I was celebrating my 13th birthday with my sister for her 10th birthday. And strangely enough, all these years I thought she died of ovarian cancer, but it turns out that's what they initially thought it was--it was sarcoma of the ileum. So, my heart goes out to any of you, especially the very young, who have lost your mother. I truly understand what you're going through and wish I could give you a big hug. I still believe my mother (who would be 76 today) is looking down from heaven, as she always has, and as your mothers must be, too. (My mother died at age 34). So I wasn't surprised to find out I had ovarian cancer, but more surprised to find out that wasn't what she died of. What irony! I discovered it myself, February 2007, and my internist did all the right tests, each one becoming more certain that it was true. We live in a rural area, so I located the nearest Cancer Center of Excellence, which happened to be Johns Hopkins Hospital in Baltimore. It's a 2-hour one way trip, but absolutely worth it. Of course, I had the total hysterectomy, and everything else out. Then the six rounds of chemo. Boy, did I know squat about that! The exhaustion towards the last half was the hardest thing for me. and then I expected recovery to be a cinch--HA! The great thing, of course, is that I've been "no evidence of disease," or, as I tell my famiy and friends, cancer-free, for 15 months. They don't like to know and don't seem to really grasp, except for my husband, that the recurrence rate is really high. Or they toss the idea out of their mind (that's my daughter), or, like my son, am sure I've beaten it. I do believe I'll live to be 85 or 95.

I've spent many months concentrating on vitamins, and am now tired of taking them. My oncologist told me yesterday that the only thing they advise survivors to take is calcium with Vitamin D. I had added fish oil, gingko biloba, biotin, multivitamin, and other things to my repertoire and it was a chore every day to take them all.

I acquired loss of hearing from the chemo. That has still not returned. I may have to get a hearing aid, which depressed me considerably last fall. But I'd like to hear movies and TV again better. Not as I used to. That's another thing I've been accepting. I'll never be my "old" self again. But perhaps that's not a bad thing.

I treasure time with my family more now. I realized that if I were told I only had one year left, I wouldn't want to travel or go live in Europe as I've always said I would do. I would want to spend as much time as possible with my husband, son, and daughter. I made a point this year of traveling to different states to see extended family, and I now am eager to go for walks with my husband (to get that Vitamin D and the exercise), out for coffee or shopping with my daughter, and out for dinner or making dinner for my son.

I still put pressure on myself to be perfect, but am trying to remember that that's an impossibility to begin with and my family already thinks I'm perfect. So, when I want a lazy day, like today, of nothing but reading a great book, drinking tea, and snacking, I'm letting myself do it and trying to let go of the guilt.

Anyway, there is light at the end of the tunnel for those of you going through the initial diagnosis, the surgery, the treatment, the recovery--it does all get better. The nausea, not wanting to eat, trouble with hydration, constipation, insomnia--all disappears. The "late" side effects that come afterwards--for me, neuropathy, joint pain, hearing loss, and weight gain--are all bearable and, in time, become part of you. The joint pain was terrible for months, but now it's gone. I am now finally feeling as if my loved ones' voices and my voice sound normal again, even though I know my hearing loss has changed them. I don't notice it now every time I speak or listen, and that's a good thing. I gained two dress sizes after chemo ended, but my oncologist is happy I've gained weight. She's be more concerned if I lost it. The neuropathy has dissipated some, but not enough.

What the hell is happening to me??? There is NO WAY I can be this sick! Why am I so tired all the time? Why do I feel so achy and feverish all the time? I eat right, I exercise, I'm not overweight - what else can I do??? I'm a 37-year-old woman and I'm walking around like I'm 90 years old! This is ridiculous! I have to find out what's wrong. I have to call the doctor.

Two doctor's appointment's later…

God, I feel even worse and no one can tell me what's wrong. Maybe I have a brain tumor or maybe I'm just a hypochondriac? Maybe I need to exercise more. Maybe being a vegetarian for the past 5 years is causing some kind of vitamin deficiency. Maybe I'm just depressed. I guess I'll call the shrink my gynecologist recommended and see if I can snap out of this.

Five shrink appointments later…

These damn antidepressants are not working at all. I still feel sick all the time. My stomach is so bloated and I have no appetite at all. I'm really starting to worry that something is seriously wrong. This weekend, I never got out of bed; never even took a shower. All I can seem to manage to do is go to work and come home to crash. My friends don't even call anymore because I always say I'm too tired to do anything. I'm exhausted and I haven't really done much of anything. Maybe I'm just under too much stress at work.

Tuesday morning, September 18, 1999

Oh My God. When I woke up this morning, I felt a lump in my pelvis, right side, about the size of an egg. Could it be a tumor or something? I have to call the doctor! Don't panic, it's probably nothing. Relax. Seriously, don't freak out. You're not even due for your yearly exam so don't be obnoxious and ask for an early appointment, ok? But at least call and make the appointment.

Wednesday morning, September 19, 1999

Well, apparently it doesn't look good, whatever it is. My gyn said she's not sure but she thinks I have a mass. I don't know what "mass" means. She's sending me to a specialist called a gynecologic oncologist for an exam and a ct scan. I'm not nervous at all. Actually, I'm extremely calm. Whatever it is, I'll take care of it and get right back to work. No problem.

Thursday afternoon, September 20, 1999

The gynecologic oncologist said the ct scan showed I have a large tumor on each ovary. He looked very serious and somber. He said I have to have surgery right away, like in the next week. Having a ct scan was weird and a little scary but I'm still not worried. I guess surgery means a hysterectomy. I feel no emotion at all. Just a sense that I want to get this over with. I've never heard of ovarian cancer before - I wonder if it's serious?

Three weeks later

I'm going to die. I am going to die. I have advanced ovarian cancer and I am going to die. I wish I could just die right now. I'm in so much pain from this damn surgery and no one seems to care. The nurses are so mean and I don't even know what the doctors are saying - nothing makes sense. Chemotherapy? What is happening to me? This can't be right! I have no cancer in my family! We are all so healthy! Damn it! What did I do wrong? Is God punishing me for something I did? It's all my fault. I've been a bad person. I have so many things to do before I die. So many apologies to make, so many amends. What has my life meant up to now? Nothing. How am I ever going to make my life count?

Six months later…

The chemo isn't working and people are starting to have that panicked look on their faces again. I'm desperate for some kind of experimental drug or clinical trial but I can't find anyone to help me. I read about people who are on their last breath and then they enter a clinical trial and are CURED. I want that! My doctor is WAY too busy to sort through all the different trials and I really don't understand what they all mean. I'm not a scientist! I'm not a physician! How do they expect me to do this myself?

One year later…

Chemo, chemo, chemo. I am so sick of chemo. I've had so much chemo that I could scream! At least I started OCAN and I feel like I'm doing something to make a difference for other women. I'm getting really good at public speaking (ok, I admit it - I'm a big ham!). I lost my hair for the second time but I kind of like being bald. It's good for getting attention because people know I have cancer. I don't want to look TOO healthy! Ha Ha! The only thing is that I'm cold all the time. And I'm in pain a lot too. Who would have ever thought I could endure so much pain for so long? I'm finally beginning to embrace the pain, the doctors' appointments, the waiting for test results, and all the other crap I go through every day. This is my life and I am grateful to still be alive, even if it's like this. Life is good!

Another six months later…

This last surgery I had was really awful. I decided to go down to Houston for it since I like that doctor so much. I guess they did a pretty good job but recovering from it has been hell. I have a scar from my boobs to my pubic bone and I'm in PAIN. I can barely walk but I have to get back into shape so I can play tennis again. I'm literally craving tennis! And real food! I am so hungry! I've been on TPN for almost a month now. Still waiting for BOWEL FUNCTION! My whole life now hinges on whether or not I go to the bathroom. Crazy!

Today…

Within the week a blood test and the analysis of the fluid pulled from my lungs indicated cancer. The next couple of days revealed it was Stage IV ovarian cancer. I had a small tumor on my left ovary. (I had been having a pain in that area for about 4 years which I thought was the result of a step aerobics class). There was a large mass on my omentum. The fluid around my lungs contained ovarian cancer cells and a Cat Scan revealed suspicious spots on my kidney and a lymph node in my chest. It was a week after my 45th birthday. My mother was diagnosed with the same disease at exactly the same age. She survived 4 years. I began my journey thinking that I would survive. If my mother could undergo chemo, who was I to be a weakling?

I was assigned to a gynecologic oncologist. I liked him immediately. He prescribed 8 sessions of chemotherapy, carboplatin and taxol, to be followed by surgical removal of my ovaries, omentum, cervix, and appendix. I was fortunately able to take a medical leave from work. I showed up at the infusion clinic dressed with make up on, a packed lunch and inspirational reading. My session took six hours. I was at the clinic longer than anyone there. The nurses were great. Over the next few months I got to know them very well and they advised me on everything from managing chemo side effects to the best mystery novels to read. Of course I was very ill after each session and my hair went very fast. I was proned to passing out and three times woke up and found myself slumped on the floor. I had completely no appetite and would not eat for at least 5 days after a session. I developed acne, sores in my mouth, severe pain in my legs and thighs, and constipation. My brain also got a litte foggy and often I forgot things. But each session, I got up and got nicely dressed. I found that after one week after a session I begin to gain strength until the next session. Cranberry juice, lean chicken and fish, broccoli, rice, and watermelong (when I could eat) made me strong. Prayer made me even stronger. People from around the world prayed for me. I joined a support group and those ladies were my sisters. In between chemo sessions my friend Shirley and I went out - coffee a cafe, bookstore browsing, museums, walks. Every month we went to the casino. At the end of my chemo my CA-125 levels went from 4000 to 19.

In September 2006 I had a six hour surgery. Within four days I was home and healing just fine. I meditated and prayed each night. "Cancer, you will not kill me! I want a spontaneous remission!" was my mantra. On November 1, 2006 I went back to work. I get the CA-125 test every 3 months. My last level was 10. It has been a year since my diagnosis.

I finished my 6th cycle of chemotherapy on January 17, 2007. At this point, I do not know what is going on. I recently had a CAT scan to determine if I am in remission or not. My doctor wants me to get involved in a clinical trail. I do not know enough about this trail, but signed the consent forms. I will need to talk with someone about this before I go forward with this treatment.

I am seeking out a second opinion and am waiting to hear from this doctor. My records were sent to his office in Arizona. Both doctors will have a phone consultation and then decide on what is next in my fight against cancer. I am patiently waiting to hear from them.

I am praying for a healing. Sometimes I must ask God to increase my faith and hope. I want to live a long and productive life. I don't want to count on the literature that I have been reading. I don't want to accept that I may have but a few years if best to live. I work at keeping faith in God. This is hard, but It is all I have.

I am single and often feel alone. I do have friends that offer their support, and I am glad for them. I am keeping hope alive. I hope you do too. I want to thank all of you who send in your stories of hope.Thank you for your support!

after dad died i decided to go up to willits and get a colonic. while he was going through hell all my attention was on him and after he was gone i began to notice my own body. i realized i had been having some digestive problems. while the friendly colonic guy was doing his thing he massaged my stomach a bit and suddenly said, "I'm not a doctor but there is something here that shouldn't be -- I say that cause I have felt a lot of tummies" .. so i scheduled an exam, with my g.p. and he confirmed a grapefruit-sized tumor, ordered an ultrasound and insisted I make an appt with a gynecologist. I asked her if she liked doing surgeries and if she had done a lot of them. yes to both questions so i said okay.

They took out everything including the omentum. First time I ever heard that word. We started carbo/taxol soon after and i started two new jobs at the same time. Seemed to sail through that first chemo. had lots of energy never needed a shot and never had any nausea.

My mother was diagnosed with stage 4 ovarian cancer in 2006. She had lupus and had a back surgery previously and always had pain in her lower back. It only got worse but she thought it was due to the metal plates in her back. By early February in 2006 her stomach started getting bigger and very hard. She went to her Dr. and he had a fluid sample taken. It was the next morning that she learned what the problem was. Of course she and my father were devastated. But her sister, my aunt, told her they would face it head on and do all they could.

She was a very musical person and full of life. My dad and she would sing and play guitar and piano together a lot. By July of 2006 she had gotten worse and was getting quite weak. She died on September 7, 2006. It was so hard being able to talk to her on Monday and by Thursday she was gone. I'm so glad we moved back to California when we did so we could have that precious time with her. I really miss her but I know she had a hope.

My advise to all women, even young women is to get a full examination each year and if there are symptoms you think aren't right...listen to your body and check it out. My mother had intestinal problems earlier on but dismissed it. I didn't know that could be a sign of probable cancer. It's better to be safe than sorry.

At the end of the three months, I dutifully went back to the GP and told him and what was his reply? Well Mrs. S., let's try a different BC and wait some more! Come see me in 3 more months... And being in the military (and that's all the "insurance" I have) that's what I did. I went through this for 9 months. The clots got larger and larger, the bleeding heavier and heavier. In the six month I was calling that health clinic demanding to see other doctors and I got my appointments but no one would refer me to the Gyn clinic. And no, I wasn't having normal periods. I was bleeding for 10 and 15 days at a time, with it stopping for maybe 3-5 days in between. This is no exaggeration. That's why I kept going to the doctor, I thought I might see someone who cared.

Finally, nine months into it, I did get to see a young Captain doctor who was smart enough to realize he had no idea what the problem was and wrote a referral to let me go to see a Gyn doc. I got an appoinment quickly, even got to see a female doc. YAY! She didn't hide anything from me. She told me what she thought it sounded like, which was exactly what I thought, but of course she had to scrape and send samples for testing. She did a biopsy of a cervical polyp - it came back questionable for adenocarcinosis (I think that's right, it's been 9 years now). Because of that a cervical conical biopsy was scheduled. After that she told me she took a large biopsy in a location she rarely cuts into, she didn't know why she took from that location, she just "felt" she should and she also "felt" the section should be larger than normal. (Well I know why she did, the Holy Ghost spoke to her heart and mind to do so.) We had to wait 3 weeks - it was a very long 3 weeks - for the result but it came back positive for cervical cancer. Since I was done having all the children I was going to have I opted for a full hysterectomy (uterus, ovaries, fallopian tubes, cervix of course). So my Gyn Onc did an abdominal Laparoscopy looking for tumors, and didn't see anything, thank goodness and removed lymph nodes from my upper thighs just in case there was cancer there. You see, through all of this my CA 125 NEVER rose above 11 [yes, that's right, it never rose above 11 (eleven)] so there was never a blood test indicating I had cancer.

The hospital I was in is also a teaching hospital so I volunteered to give up my organs for study and I allowed interns to learn from me (like on Grey's Anatomy). On my fifth day hospitalized a young doc came to interview me and slipped up by mentioning something he thought my Gyn Onc had told me. And that was that the Lab had found cancer in both ovaries and both fallopian tubes -- what a shock for me! You see, I went into surgery thinking I simply had Cervical CA. Thank goodness I had donated my organs for study. The Lab was examining frozen sections to ensure they were good for study and found Ovarian CA in each ovary. You should have seen that poor young doctor's face when I told him I had no idea because my doctor had told me no such thing! He was terrified because now he had told me information he knew he had no business telling me. But I didn't tell my doc his name when my Onc doc came in and I reemed him for not telling me I had Ovarian Cancer and Fallopian Cancer. AND he was shocked too, because he said HE didn't know!!! Some hospital huh? When the Lab doesn't notify the doc or the doc doesn't have the wherewithal to go the the lab to check on frozen sections???? So anyhow, my doc went to the Lab and checked, twice, to be certain and yes, there was cancer in both ovaries, but apparently no cancer in the fallopian tubes (that was a mistake) -- but with these other mistakes I wonder if it was true. So, there was ovarian cancer, it was microscopic with no telltale signs which is why my docs had no idea and therefore didn't stage it of course and therefore didn't remove any abdominal lymph nodes (my cervical cancer was stage 1)-- which means I could still develop ovarian cancer in my lifetime. My doc told me the ovarian cancer had "clear cells" in it which, he said, is the most deadly type of cells. He said I needed either radiation or chemo and left it up to me to decide which one after discussing the pros and cons of each. I went with chemo. He used Carboplatin and something else but it's been 9 years now so I don't remember what the other chemical was. My surgery was July 19, 1999 and chemo ran Aug. 1999 to Thanksgiving 1999. My GYN Onc told me I am CURED vs. in remission.

Next, my father was diagnosed with prostate cancer, he went through surgery but did not need any additional treatment after that. At this moment he is 84 and is cancer free.

Now the reminder of my story covers a period of 6 years, my Mom was the next victim and this time it was ovarian cancer, a stage IIII. She went through surgery & several rounds of chemo that never left her in remission, she passed away only 30 months after diagnosis. Quickly two years after that I was diagnosed at age 43 with ovarian cancer a stage 3b. I have completed chemo, second look surgery and proud to say I have been in remission for the past 30 months. KNOCK ON WOOD.

The University hospital where I had my treatment, recommended genetic testing because of the many occurences of ovarian and breast cancer in my immediate family of 6. I was the first to be tested for the gene mutation, and it came back positive for the BRCA 1. At that time the only smart thing to do was to have my breast removed to prevent any possibilites of getting breast cancer as my risk factor was very high. One of my other sisters also was tested and she also was positive for BRCA1 and she also went through the preventitive surgery to have her breast removed. Also my twin nieces (daughters of my sister who had the breast cancer) were tested, and one was positive and one negative. The one at high risk also opted to play it safe and at 37 years of age has had her breasts removed and will have a hysterectomy this fall.

The next day my husband and I went to the gynecologist's office. He examined me and confirmed the diagnosis that had shown up on the ultrasound. He then called a gynecological oncologist and got me an appointment for the next day. The following Monday I was admitted to the hospital and on Tuesday I had a 6 1/2 hour operation. The cancer was throughout my abdomen. My gynecological oncologist explained that they removed it all but there were "measles like spots left throughout that the chemo would get". I underwent 8 cycles of cisplatinum and adriamycin over the next 6 months. A few months ago my husband mentioned that the gyn-onc had told my family after the surgery, that there was a lot more cancer then he expected when he opened me up. At the time I was diagnosed, I was completely alone. It took me 3 months to find someone who had survived the disease more than 1 year. Survivors were out there, but we had no way of connecting. I remember my gynecologist coming to see me after my surgery and telling me I had a very good internist. At the time, I had no understanding of what he was saying. Over the past 7 years I have heard many of the stories of misdiagnosis that have occurred to so many women and I'm sure that had my internist not listened to everything I said, I would have been one of those cases. Time and again when I tell my story, doctors tell me how lucky I was. With all the medical tests available the thing that made the difference in my case was my telling the doctor EVERYTHING and her LISTENING to me. Asking the proper questions and listening to patient response is still the most important part of practicing medicine.

-------------------------------------------June 2004 Update-------------------------------------

Everything seemed to be fine until February 2003, when I suffered a seizure and was diagnosed with a metastatic ovarian tumor in the lining of the brain. I underwent brain surgery for the removal of the tumor but rejected radiation treatment to the tumor bed. Instead, I modified my supplementation program as an alternative. In May 2003, my CA 125 was 244 but in July, it fell to 34. That drop in my CA by 210 points indicated to me that my supplementation was effective. However, in December 2003, my CA rose to 66 and later to 121 (I previously said 123). In December 2003, a CT scan showed that two tumors disappeared and the majority of the remaining tumors were smaller than in December 2001 (some by over 50%). One tumor grew by less than a centimeter from December 2001 and one new tumor was observed of less than one centimeter.

In March 2004, I began to experience some discomfort in the lower chest area. Apparently, the tumor that grew between the years 2001 and 2003 continued to grow and was the source of my problems. Consequently, I began chemotherapy in March 2004. The chemotherapy treatment was a single agent carboplatin. I also continued with my supplementation program. My CA 125 level was 228 at time of treatment (I previously said 121). After the first treatment, my CA 125 dropped to 179, but after my third treatment, it rose to 280. I am worried that my cancer is resistant to both the chemotherapy and my supplementation program. I intend to make changes to my supplementation program in an effort to bring down my CA levels. Additionally, the oncologist is considering a different chemotherapy agent. However, the good news is that my pelvic area seems to be okay according to my oncologist. With respect to the metastatic tumor to the lining of my brain, my neuro/oncologist told me my brain scan was normal and said no further visits were needed. He said if anything were to happen it would have happened by now. That is all for now and I wish all of those struggling with ovarian cancer the best of luck. I am praying for you.

----------------------------------------------

Kansas City Star - Monday, September 2, 2002

EVERYTHING CHANGED

A year ago the phone rang: 'How about surgery tomorrow?'

For September, Ovarian Cancer Awareness Month, writer Donna Trussell decided to tell her story. After an oncologist removed a mass the size of a small grapefruit, she had a 30 percent chance of surviving five years.

By Donna Trussell

Special to the Star

At first I wanted to say: No, that can't be. I'm not a cancer person. Cancer is for other people, like getting a tattoo or eating squid. Fine for them but not my style.

And this wasn't just any cancer.

I first noticed vague symptoms two months before, but I attributed them to the advancing of menopause. After all, I was 47 years old.

I'd get severe bloating for a day -- I wanted to stick an ice pick in my stomach to let the gas out -- and then it would subside. I'd get constipated.

And I'd get tired. I bought some herbal teas and talked to my doctor about taking estrogen.

My final symptom was a low-grade fever, but that came along later, just before I doubled over with abdominal pain on a sunny August afternoon.

My doctor's nurse ordered me to the emergency room. I argued. Bad things happen in emergency rooms. But she convinced me to go and may have saved my life.

The first doctor I saw thought I might have diverticulitis. He mentioned the possibility of an emergency colostomy.

"No! That's not the way I do things. I do research. I get second opinions."

"You may not have a choice," he said grimly.

Within hours, I was given a blood test for CA-125, a protein associated with ovarian cancer. An ultrasound and a CT scan revealed a mass the size of a small grapefruit. My white cell count was high, and the doctors began pumping me full of antibiotics.

Two days later, on my birthday, I was still in the hospital when I first heard the words "ovarian cancer." Suddenly I wanted to go back to the colostomy scenario. Now it didn't sound so bad.

After I left the hospital, I was to be watched. If the mass got smaller, we'd know it wasn't cancer.

But the mass didn't shrink. My CA-125 was still elevated. My ovaries and the mass had to go. An oncologist would do the surgery.

I wanted nothing to do with an oncologist. An oncologist might drum up cancer cells just to increase business, right?

The oncologist in question was Verda Hunter. Her name had been in the news. She had turned pharmacist Robert Courtney in to the FBI for diluting chemotherapy drugs.

But I didn't want to see a Verda who specialized in gynecologic oncology. What kind of woman would go into a field where you watch people die? A woman named Verda, that's who.

I pictured a comedian in a leopard-skin, pillbox hat and cat-eye glasses with rhinestones. *Verda.* Well, let this Verda try to railroad me into unnecessary surgery.

On Verda's door was the word "oncology." I winced.

There was a form to fill out. I asked for a pen, and the receptionist pointed to a cup full of silk flowers.

"Pull one out," she said. The flowers were pens. "We haven't lost a single pen since we got those," she offered.

Verda. Fake-flower pens. I didn't like Cancer World, and I wanted to go home.

Verda didn't wear glasses or a leopard-skin hat. She was quite beautiful. And she didn't crack jokes. What really sold me on Verda, though, was that she didn't want to do surgery.

"Your ovaries feel normal size for a woman your age," she said. "You're a small woman, and if there were a mass, I would feel it. Let's do another CA-125. I'll bet it's gone down."

Dr. Hunter was my kind of gal. Overjoyed, I left a message for my family doctor: *no mass!* It was all one big mistake.

A few days later, though, Dr. Hunter's nurse called to schedule surgery. Dr. Hunter had seen the CT scan and changed her mind.

"But my symptoms are gone," I said. But, but, but...

"Let me read you the radiologist report," the nurse said. It was brutal. Radiologists don't mince words. My fantasy of a benign mass evaporated.

The surgery was scheduled in three weeks, at the end of September. But I had one more chance of reprieve: another ultrasound. Optimism faded when the technician skipped part of the exam because the mass was so large.

"If they can't see this, they're blind," she said.

The next day -- Sept. 11, 2001 -- I was watching the twin towers fall on TV when the phone rang.

It was Dr. Hunter's nurse. "How about surgery tomorrow?" I knew better than to argue.

It was all beginning to seem like a nightmare -- an exhausted, unshaven, melancholy Peter Jennings; ghoulish footage, repeated endlessly, of a jet liner crashing into the tower; and the immediate prospect of the most ominous surgery of my life.

If ever I felt like the world was ending, that was the day.

Just before entering the operating room I told the anesthesiologist about a news report I'd seen: A woman woke up during surgery unable to move or speak.

"Make sure you give me enough so that I don't wake up," I said.

"You bet," he replied in his best Wilford Brimley.

"But don't give me so much that I don't wake up at all. I want to wake up."

He smiled. "That's the idea," he said, patting my hand.

Oh, they were kind. All of them. My last sight before going to sleep was a masked face standing over me, and I thought I saw compassion in the man's brown eyes.

The next thing I knew I heard a voice saying, "This is Dr. Hunter. It's mostly good."

She was glowing with happiness, in fact, when she talked to my husband. She thought the tumor looked precancerous. I might be able to get away with an abbreviated course of chemotherapy or even no chemo at all. We'd have to wait on the pathology report to know for sure.

It was a decidedly more subdued Dr. Hunter who came to my bedside two days later. A biopsy revealed microscopic cancer cells beyond the tumor and ovaries.

I was Stage III. Advanced.

"What are my chances?" I asked.

"I'll tell you," she said, "but I don't want you focusing on that. The five-year survival rate for Stage III is 30 percent."

With the recent advances in oncology, one would expect to hear 70 or 80 percent. But for me, the odds were that I would die within five years.

"People think of a skull and crossbones when they think of cancer, but I want you to think of this disease as manageable," Dr. Hunter said. "If diabetics didn't get their insulin, they'd be dead in a week."

She may as well have been talking to the moon.

It was only later, when I connected with other ovarian cancer survivors whose doctors had all but pronounced them goners, that I discovered how fortunate I was. I had found a warrior doctor.

In the months that followed I also discovered the answer to my question: What kind of people go into a field where they watch people die? Not misanthropes, as I once suspected. Rather, people with courage.

In Dr. Hunter's office are makeshift signs that say, "Never give up on anyone. Miracles happen every day." A year ago such piety would have made me squirm, but everything takes on a new meaning once you have cancer. Dr. Hunter and her staff were not going to hand me over to the coroner without a fight.

For me chemotherapy was not the ogre of popular mythology, thanks to the drugs for side effects. During my six months of treatment I felt queasy for only a few days, and anemia was always short-lived. But I did lose my hair, including my eyebrows and eyelashes.

A friend wanted to take me wig shopping, but I told her that a local charity gives away wigs.

"But if they're free, you know they'll all be Midge wigs," she said.

Midge wigs?

"Midge, the neighbor in `The Dick Van Dyke Show.' "

Oh yes, the brunette with the short, tight curls. I found out my friend was right. I resolved to wear hats. Once my eyebrows and eyelashes were gone, whom was I kidding? Some women pencil in eyebrows, but I preferred the barefaced cancer patient look to that of the 1930s movie star.

I learned to forgive well-meaning friends who offered words of dubious comfort. One said my cancer was an opportunity to "grow spiritually." I left unsaid the suggestion that came immediately to mind -- that she could have a similar opportunity by jumping off a balcony.

An oncology nurse told me she could "get hit by a bus tomorrow." I later discovered that the bus comment is the No. 1 annoying response to a cancer diagnosis. One ovarian cancer patient said that the bus scenario isn't even a good comparison. It's too random.

A more useful analogy would be: You wake up in a strange place and you're told you *were* in a car crash. It was a 10-car pileup. Two or three of you will survive, but we don't know who, and those survivors will undergo debilitating treatments for the rest of their lives.

My last chemo treatment was in February. My CA-125 was normal, but only a CT scan could confirm my remission. My oncologist met with me to deliver the results: clear.

"Your chance of recurrence is 50 percent," she said.

I was entering a new era, one that unsettled me even more than my original diagnosis: waiting for recurrence. I told Dr. Hunter I was scared.

"But everything has gone exactly as we'd hoped. You did everything you were supposed to do."

"Well, it's not like I had a choice."

She looked away and then said quietly, "I know a little something about not having choices."

"What happened?" I asked.

"It wasn't cancer. But let's just say there was a certain pharmacist."

The chemotherapy patients would loudly gripe about Robert Courtney all day long, but I had never heard Dr. Hunter or any of her staff mention his name or refer to him -- or the effects of diluted cancer drugs -- in any way.

"Every morning," Dr. Hunter said, "I have to get up and look at myself in the mirror. Every morning I want you to get up and look in the mirror and say, `Today I'm healthy.' "

Sometimes you can see an enemy most clearly in the eyes of the soldiers. This doctor, who had dedicated her life to saving women, who had a reputation as one of the most caring and skilled oncologists around, would never be the same. The sadness is etched in her face.

As for me, cancer turned my life upside-down. Everything changed -- my sex life, my work, my dreams and hopes for the future, my sense of myself and my place in the world. Friends and family did all they could, but the loneliness of my diagnosis was unrelieved until I discovered an online support group of 1,200 ovarian cancer patients -- www.acor.org.

There I found solace among others who were living the same limbo existence. Most of these women signed their posts with date of diagnosis and organs removed. Here's one woman's list: spleen, appendix, all female parts, omentum, part of the intestine and colon, many lymph nodes.

"BUT," she wrote, "HE LEFT MY HEART!"

To comfort a woman whose sister was dying, I wrote about Anne Morrow Lindbergh's search for peace after her infant son was kidnapped and murdered. She tried every false path there is to recovery. Only one helped, the story of the mustard seed:

A woman who's lost a baby asks if there is a cure for her grief. "Yes," a holy man replies. "You must find a house that has never known sorrow, take a mustard seed from that house, and then you will be cured."

The woman spent the rest of her life looking but could not find a house that had never known sorrow. To suffer is to be human.

I resolved to stop comparing myself to people who live into their 80s and 90s. Instead I thought of the men, women and children on the Titanic who died an icy death far from home and of the doomed airline passengers on Sept. 11.

I, in contrast, expect to be in a warm bed surrounded by nurses and loved ones. And who knows? I just might survive, if for no other reason than to make trouble.

Twenty years ago ovarian cancer patients often died within one year of diagnosis. Now women are living two or three years, sometimes longer. Now we've formed groups, and we're trying to change our terrible statistics.

We may not be able to save ourselves, but perhaps we can save our daughters and granddaughters.

Donna Trussell is a poet, fiction writer and former editor and film critic. She lives in Prairie Village. Her husband, Robert Trussell, is the Star's theater critic.

It was such a shock when her cancer returned in late November. Her cancer was resistant to the treatment. Mom fought this terrible disease with all her might. She insisted on more chemotherapy and had her last treatment two days before she died. Before she died, she gave each of us a bit of her wisdom and encouragement. She did not say goodbye, she just said that she would be all right and so would we. She ensured me that worry was a waste of time, that all things work out. Mom slipped away in the early morning on December 22. Within minutes of her death, a heavy snow (her favorite) began to fall, covering the earth in a silent white blanket. It snowed for 7 hours that day.

Since my mother had heart problems, she had to have cardiac clearance before surgery. This consult led to them doing a heart cath and then an angiogram with stent placement the following day. That day at 1:09 p.m. she died on the operating table while undergoing the cardiac procedure. The cardiologist had no idea what happened; she just went into cardiopulmonary arrest and they couldn't bring her back despite a long period of trying.

We never found out for sure that she had ovarian cancer but the doctors felt sure she did. I miss her so much; it was such a shock to lose her so suddenly. I was dreading that she might have to go through surgery and chemotherapy for possible ovarian cancer, but I certainly didn't expect to lose her that day.

The extraction of fluid was done again in a few days and another gallon of fluid was extracted and checked for content of cancer cells but none were detected. In the meantime, I was getting the fluid right back in no time and finally, the group of physicians diagnosed that I had ovarian cancer. I was immediately scheduled to see an Oncologist Gyn and put on chemo. This was all taking place in my hometown, the chemo that is, and I had an appointment with the Oncologist Gyn in May and all of these started in February. I was admitted to the hospital for preparation for surgery on May 19, 2003. I had a complete hysterectomy and lost 54 lbs overnight. I had an enormous amount of fluid on by then and after 6 days in intensive care unit I was transferred to the normal ward and was sent home two days after.

I had a total of 25 treatments of radiation, 6 weeks after surgery, and have survived cancer free for almost 4 years now. I have had regular checkups with CT scan each year, CA125 tests every three months, and chest x-rays every 6 months. I just had a check-up Jan 23rd and was given a clean bill of health again for which I am thankful for. I will be cancer free for 4 years in May 2007.

This is a success story up to this point and I am pressing on gratefully. I had a wonderful doctor and with the grace of God, I am still living after a horrifying experience. I have a friend who has gone through the same events as me and she was just three months behind me in surgery with the same doctor and hospital and she’s still managing to stay cancer-free. We stay in touch weekly and are both very thankful. I had stage 3 cancer and she had stage 3.9 they say. Success is our stories to this point.

My mother’s story is similar to many others’. She was under the care of a doctor for six months prior to her diagnosis for symptoms that we now recognize as classic symptoms of ovarian cancer. In December of 2002, my mother who was then 61 developed a red rash across most of her body. Her doctors still to this day deny any linkage between her rash and ovarian cancer. All we know is that her rash began when her other symptoms began, it disappeared when the disease was in remission, and it re-appeared when her cancer had returned. Our bodies have a way of telling us when something is wrong. My mother’s body was shouting out for help, but no one seemed to be listening.

Besides her rash, my mother was bloated, had terrible indigestion, and had a nagging pain on her right side. This, along with the rash, persisted for many months. Her doctor prescribed diet pills, exercise, and creams. He never mentioned the possibility of ovarian cancer and never sent her for a catscan to discover the source of the pain on her right side. He never gave her a gynecological exam or recommended that she see a gynecologist. This was true despite the fact that my mother had a history of ovarian cysts as a young woman and had even had an ovarian tumor (non-malignant) the size of a baseball and an ovary removed when she was 38 years old. At that time, the doctors had reasoned against removing both of her ovaries on the grounds that it would cause early onset of menopause. I suppose they viewed menopause as a disease.

In truth, my mother should have been more pro-active in terms of her care. She should have demanded to see a gynecologist. But she was from a generation of women that was raised to think of doctors as all-knowing and that gynecologists are only necessary for women who are trying to have children.

By June of 2003, my mother’s stomach had bloated to the point where she looked as though she was nine months pregnant. When I saw her, my heart nearly stopped. Something was terribly wrong, but I had no idea what. My mother at that time was also having a very difficult time breathing. Getting up to go to the bathroom exhausted her. My sisters and I convinced her doctor to finally send her to a specialist. He sent her to a gastroenterologist who examined my mother and said, “I feel no masses”. But, after much urging, he agreed begrudgingly that she should have a catscan. She did and it revealed a mass the size of a grapefruit on her ovary and fluid in her lungs. Finally, six months from the onset of her symptoms, we had a diagnosis – stage IV ovarian cancer.

From that point on, my mother was in the care of the best gynecological oncologists in Northern NJ. But as it turns out, it was too late. There was no hope of a cure, only the hope of remission and decent quality of life. My mother grasped that hope and held on tightly through nine months of chemotherapy and surgery. As it turns out, she was able to tolerate chemotherapy very well. Her swelling rapidly subsided and the pain and her mysterious rash disappeared. By March of 2003 she was officially in remission. I was with her the day that the doctor told her that she didn’t need to come back for another 2 months. She was ecstatic and so would I have been had it not been for that nagging sense of dread in the pit of my stomach. At best, I was only cautiously optimistic. I had read the statistics on surviving ovarian cancer. I wasn’t convinced that we had beat it.

Less than two months later, my mother’s CA level had increased. She suspected as much because that mysterious red rash had returned. She took the news in stride. Chemo wasn’t so awful the last time, she reasoned. I can do this again, she said. By September of 2003, it was apparent that her new chemo was not working. The cancer was gaining on her and we began the race against the clock to find her a treatment that would. But her body was growing tired. By October of 2003, she was too tired to get out of bed much and too sick to keep any food down. By November, her lungs and abdomen had to be drained of the fluid that had accumulated. Her quality of life was extremely poor and she kept praying for the end. Her doctor, however, wanted to keep treating her and held out hope that he could arrest the cancer’s growth and restore decent quality of life. She tried to tell me that she knew she was dying. I remained hopeful.

I remember sitting with my mother one day as she was apologizing for how dreadful she thought she must look. I looked at her, and for the first time in my life I realized just how beautiful she was. At that point, she had no hair, she was dreadfully thin, and she could not even help herself to the bathroom. But when someone is stripped of all outward vestiges of their dignity, something more lovely – almost other worldly – shines through. It is the essence of the person - their spirit and their love. It was breathtakingly beautiful to behold. I will cherish the moment I looked into my mother’s eyes and saw what a truly beautiful person she was.

On January 1, 2004 – eighteen months after her diagnosis and 24 months since the onset of her symptoms – my mother age 63 died. She was at home. Her heart simply gave out. She died peacefully, in the loving arms of my father. I do not think that she was aware that she was going to die that day. I think that she would have called her daughters home if she knew. I guess I always thought we would somehow know when she was going to die and that we would be there with her when she passed on. I had just seen her over the Christmas holiday less than a week before. Not only did cancer steal her life in the end, but it robbed her of the chance to say goodbye. Perhaps that was for the best. She never wanted to say good-bye to us.

As I read the stories on the website, I am struck by the amount of women whose symptoms were similarly ignored or mis-diagnosed. Those of us who have been left behind need to get furious – furious at the medical community that routinely disregards the complaints of post-menopausal women, furious at the insurance companies who refuse to pay for preventative care and screening, furious at the policy makers who allocate billions of dollars to the development and deployment of weapons that destroy lives while the war that tens of thousands of women are fighting against ovarian and breast cancer remains seriously under-funded. This is a war that we must win because beautiful women like my mother are too precious too lose. Send an email to everyone you know alerting them to the symptoms of ovarian cancer and ask them to send the message on to everyone they know. You never know who your message might reach. Had I received an email describing the symptoms of ovarian cancer back in December of 2002, I would have forced my mother- insurance company approval or not - to see an ovarian cancer specialist. If only we had known, she might be alive today.

I wish all of you who are still fighting this battle my love and warmest wishes.

December 28, 2003: This year, 2003, was the year of my 60th birthday. In May I saw my family doctor for an annual physical. I told him about a sharp, stabbing pain I'd had a few times in my lower right abdomen. I had no other recognizable symptoms that I can recall. After all the stories I've read here, I'll have to say I think I have a very good doctor! He gave me a full pelvic exam and couldn't find anything wrong. But he went ahead and ordered an ultrasound, and followed that with a blood test for CA125. (I had no idea what he was looking for at that point.)

He called and told me "something" showed up on the ultrasound and suggested I see a gynecologist. I guess I'm good at self-deception because I didn't ask him what he thought it was and told myself I probably had an ovarian cyst. I got an appointment with a recommended gynecologist quite soon and he turned out to be the bearer of the happy tidings that I probably had ovarian cancer.

I remember feeling dizzy and sick when I heard that word - it has tremendous power. I wondered if I'd be able to drive my car home; I did. I laid down on the couch and thought about how to tell my husband - I felt like all the air had been drained out of me.

Well, within two weeks of that dark day I had major abdominal surgery - all my female parts were removed, along with a grapefruit-sized tumor on one ovary. The cancer was staged at IIIC- it had spread to the other ovary and there were three distinct spots of it on my abdominal wall, but nothing on any other organs. Almost three weeks to the day after the surgery I began chemo - I had six treatments of taxol and carboplatin, once every three weeks. I lost all my hair and most of my energy but feel very fortunate in that I never had nausea or vomiting and, except for a few days after each treatment, never really lost my appetite. (Although that wouldn't have hurt me!)

Being the divorced, independent, mother, grandmother, career woman that I was, I did not have time to be sick. I ate right, exercised, did my yoga, never smoked and only sipped wine in social settings; what serious illness could possibly be growing inside me?

Hungry for that next promotion, in May 2003, my job tranferred me to the sunny coast of SC. Long hours at work, with all that unpacking/moving stuff at night, I thought I had simply pulled a muscle. You know, just overdid it. And looking back a few months, the fatigue was bad and the bloating and stomach pain was growing, but nothing a long night on the heating pad didn't help (and a couple extra pain pills).

Finally, I did the phone book thing. Looked up a gyn and made an appointment (I chose a female doctor). On May 30 the doctor just as well kill me on that examining table -- it hurt too bad to do internal exam. The doctor made the first available appointment for me to have an ultrasound, but dumb me cancelled it. It was Father's Day weekend and I had to drive home to see Dad!

I rescheduled on June 21st and the tech said I should call the doctor first thing that Monday. I didn't have to - she called me with a CT Scan appointment. I had never had a CT Scan and low and behold - I was allergic to contract dye! 911 and off to the ER! Just before passing out, I remember looking up at the radiologist and begging, please tell me you got enough shots of my stomach to tell me what is wrong!

Later that afternoon while I was still being monitored in the ER, the radiologist came to the nurses station, asked if I was still there. He told the nurse to tell me it was very important I call my doctor in the morning. Again, I didn't have to. She called early and sent me to get a CA-125 test done at the local hospital. And the nurse at the hospital said due to the 4th of July it might take a week to get the results. WRONG! The doctor called me early on July 7th to say -- there is cancer and lots of it! My CA-125 was 2,983! She needed my permission to get me to the Medical University of South Carolina in Charleston immediately!

The female doctor that had never seen me before in my life probably saved my life! On July 30 I had surgery performed by the top two doctors in SC in Gyn/On. The day of surgery my CA-125 had climbed to almost 5,000. This monster was growing fast! It was Stage IIIC. In August two solid masses were found in my right breast. After that surgery, which was benign, they continue to monitor me closely for mestastasis to the breast. I started a clinical trial at MUSC in August 2003. I completed four rounds of Gemzar and Carboplatin. It was determined the toxicity building, PN, hearing loss, blurred vision, was due to the Carboplatin.

In an effort to give me the quality of life I had enjoyed, it was decided to change my chemo to Doxil. No one knew I was allergic to it also! After only minutes into the drip - my body shut down. Of course, I won't be getting Doxil again. And with my CA-125 doubling since January 5, 2004, it was decided I start Taxotere immediately. I did February 12th! My doctor at MUSC said the PN and all is mute at this point. He may introduce a Carboplatin again if the Taxotere alone isn't enough.

Remember that old cliche..life begins at 40?

Well, for me my life began at 52, when I met my wonderful husband and moved to England. Life in London was very different from life in NYC, but I adpated. Fast forward 4 years and 40 lbs and I began to feel unwell. I went to my GP and gave my symptoms, frequent unrination, night sweats, a cough that wouldn't go away and my abdomen seemed to be swelling. Without even poking or prodding me, she proclaimed I probably had a bladder infection and if I lost weight, my frequent peeing would more than likely stop. I went back and forth to this doctor for three months and didn't get any better. Now my back started to hurt and that was also attributed to my weight gain. I was worried and I told her I think I have cancer. She smirked and replied, "Where, in your eyelashes?" So I took yet more anitbiotics, went for a chest x-ray (which showed clear) and became more and more tired. My entire abdominal region was so swollen that I looked pregant with twins. I made yet another appointment but to my great luck my original GP wasn't in that day. I saw one of her colleagues. This woman doctor carefully read my notes and noticed my family history of cancer. She listened to my chest and thumped on my abdomen; she gave me a form for a sonogram and some bloodwork. Now most people complain about how slow the NHS is . I had no problem. I waited two days for a sonogram and my bloodwork was done the next day. The results came back. The sonogram showed "something" in my pelvic area. I knew then and there it was cancer. I got an appointment with the local oncology clinic within a week. My onocolgist, a brilliant woman, was kind and compassionate. She explained that my mass was over 16 centimeters wide and she was 99% sure it was malignant. She introduced me to my surgeon, my brilliant Mr. J. He explained that my tumor markers were above 1900 with the normal range between 0-30. He recommended 4-6 rounds of chemo, then if able, debulking surgery. I trusted my team from the start. I was admitted to the hospital and drained of more than 12 liters of fluid) Two weeks later, I had my first round of chemo (carboplatin and taxol), got a bad reaction which kept me in the hospital for two weeks. First time out the gate the tumor markers dropped to 800. Everyone was amazed. I'll tell you this, all the time I battled to defeat my cancer, I was never afraid. I prayed to God and the Lady of Lourdes for my recovery. My surgery went textbook perfect. All visible signs of cancer were taken out. My tumor markers dropped to 17, they are now at 4. I still tire easily and can catch a cold at the drop of a hat but in time this will pass. My oncologist said it is my sense of humor that saves me. I tell that I trust my health team and have faith in my God.

So ladies, when your doctor fobs you off with a diagnosis of bowel trouble, or stomach trouble, or some vauge woman trouble you stand up for your self and demand a blood test that includes the CA125 tumor marker!!!! I don't care if you are 100lbs or a 1000lbs, you make sure your concerns are addressed and not attributed to any thing so tangible as your weight!!

I hope you are all blessed with such a compassionate, brilliant team as I was. Don't forget to pray to the Lady of Lourdes. She helps everyone one.

Love to you all,
Denise

Things didn't improve - I eventually saw my usual doctor who gave me a referral. A few days later but before I was due for the US, I felt so bad that I was crying but not sure what was hurting. My husband rushed me off to the ER. I thought it must have been stones in my gall bladder - I had all the symptoms - fat, over forty, fair and family history!

Two hours later, I was told I didn't have stones but I had what appeared to be cancerous tumours throughout my abdomen. My ca125 was 1900. Needless to say, the shock was overwhelming. I wondered how I would tell my 3 daughters and my mum… They couldn't operate because the tumours were so big, so opted for 3 rounds of carbo/taxol to shrink the tumours and then they would operate. I was told it was stage 3C. At the same time, my youngest daughter (one of twins) needed leg and spinal surgery. I couldn't stop looking after her yet, so they gave me another round (4th)of chemo before scheduling the surgery.

The surgery went well, the tumours had responded to the chemo, my ca125 was normal, another 2 rounds of chemo and things were improving for me. Unfortunately, although my daughter's spinal surgery went well they had a ventilating and positioning accident in hospital which caused permanent nerve damage in her leg - terrible for a teenager, or anyone, to experience. The good news is that I had my 3 year anniversary on 14th of July and I am still in remission. Since diagnosis, I have changed to a very healthy diet - no meat, salt, sugar, bad fat, caffeine, alcohol. I eat mainly organic unprocessed food and drink purified water. I also take vitamins and other supplements and drink freshly-squeezed fruit/veggie juices every day. I have lost 25 kg in weight and have felt really good for the last 3 years.

Last year I had a bit of a fright when I developed a lump in my abdomen - it turned out to be an incisional hernia. I had that repaired in August 2007 - my gyn onc surgeon had a look around during the operation and sent tissue samples to the lab - it all came back clear.

I feel such gratitude - first to God for His mercy and also to my husband, children and family and also to my friends for their support and caring. I feel a need to help others but don't know how...I still worry about recurrence but try to make the most of each day and to realize that I must pray for God's will to be done, not my own.

On May 20th I was sitting and I took an unnatural double breath. I said to myself, that was weird. Within a week, I could barely walk since my lungs filled up with fluid. I had debulking surgery June 27th and the fluid came back Stage III. My ovarian cancer had metastasized.

I began a Stage II Clinical Trial (Make sure everything is okay with your insurance company) on July 27. I received three drugs every twenty-one days. When I began, my CA-125 was 234. When I finished on November 9th, it was 74. The chemo had not stopped my Pleural Effusions and I had to have two surgeries in December 2006 to seal the lungs. The surgery was a success.

I am taking Avastin on the Clinical Trial, but my CA-125 is up to 430. The thing is I feel good. I am back to work a few days a week. However, now I have fluid buildup in my abdomen. They call it ascites. I will have a CT Scan next week and will have it removed for the first time.

My Doctor tells me there are many options for us. Stay positive and live everyday with happiness. It is tough watching my loved ones around me. I think it is harder on them than me.

Someone asked to hear from long term survivors. Well, here I am. Diagnosed IIIc in November '96 at age 53, my story is just like that of nearly everyone else....misdiagnosed (IBS and then Fibromyalgia!), I finally ended up in an emergency room with incredible abdominal pain. A gastrointerologist removed the fluid from my belly and diagnosed ovca. My CA125 was under 200.

I still don't know how my biggest piece of luck came about....I ended up with two incredible doctors. An oncologist/hemotologist to supervise chemo and the most important gyn/onc in Seattle for surgery.

Taxol and Carboplatin once every three weeks for 6+ months did the trick. The first time. Unfortunately, 3 1/2 years later (April 2000) I again had abdominal discomfort and my CA125 had risen from 6 to 18. My surgeon ordered an ultrasound after a suspicious pelvic exam. Sure thing. Here we go again.....just before surgery I asked for another CA125 and my count was 28, still in the "good" zone. My doctors don't think this was significant at all but I sure do watch my numbers!

Surgery this time included a bowel resection. Taxol and Carboplatin again but this time once a week for three weeks and then one week off, for six months. Far fewer complications this way but more nausea and I hated that. Also, the first three times I ended up back in the hospital because my digestive system stopped completely. We followed treatment with second look surgery and then once a month, for three months, IP chemo...yeah, ahead of the pack and recent discoveries of its merit! With incredible foresight, my doctors had the IP port inserted new, each time, thus avoiding the complications many in the recent test group encountered.

Doctors say my ovca is chronic but, hey, it has been more than 9 years since original diagnosis and more than 5 since recurrence. I've seen my son married and become grandma to his boy/girl twins; I've been able to help my Mom through the loss of my Dad; my daughter is nearing menopause! and her boys are nearly grown; and at 63 I'm making retirement decisions. I appreciate every moment.

The story goes . . . I saw my OB/GYN in January and lied to him that I had some pain in my pelvic region (just because my best friend suggested getting a transvaginal ultrasound - since a Pap Smear is utterly worthless for anything but Cervical Cancer). The procedure revealed a "complex cyst" on my left ovary and my doctor had me come in for some "tumor markers." All of my tumor markers were fine except the CA-125, which registered 50. I wasn't even that concerned, knowing the cyst itself can falsely elevate the number. But when he said I had to see an Oncologist/Gynecologist, I got scared.

My Onc/Gyn performed a TVS in his office and said the cyst doesn't look malignant and that maybe we should just monitor it. Well, I returned 6 weeks later with no change in size (but my CA-125 went down to 42). I go back and forth on this. My ovaries are not more important than my life and I'm not one of these women who feel as though life wouldn't be worth living without children. Having said that, I certainly don't want to give up my ovary only to learn that it was perfectly healthy.

Surgery is not something to laugh at and there are risks. I am relatively young, have no known ovarian cancer in my family and have never used fertility drugs. However, I have a 2.5 cm cyst embedded within my ovary that is complex.

I am a realist. I know the stats and the prognosis for anything over stage III is..."settle your affairs" - that's what a very good friend's husband told me in confidence (who is an oncologist). I would hate to sit on this for another year, only to lose my entire reproductive system and my life too.

It seems like I have it figured out (to have surgery) but I truly don't.

I welcome, welcome, welcome all opinions from women out there who have been through this.

Thanks ladies - and much luck to you all.

Well, the initial diagnosis was that I was 5 months pregnant and when I insisted that unless it was immaculate conception, something else was wrong and the doctor sent me for an ultrasound-then I was told I had a cyst the size of a football on my ovary and was scheduled for emergency surgery the next morning.

My worst experience of this whole thing was that my doctor and my surgeon both thought the other would tell me I had cancer so I was totally shocked a few weeks later when I asked the surgeon if I would keep getting these cysts and what to do about them-his response, "You have cancer and you need chemo and you are going to be very sick and lose all your hair."

Well, I can't exactly remember the few days following. I remember going to my room and didn't want to talk to anyone-I was so scared! Then my parents sat me down and told it like it was and of course we all cried. It was decided I would go to a bigger city for treatment to a children's hospital.

Jeanne is 18 years old, learning disabled and a senior in high school. Her cancer story began in summer of ’99. She had just taken a job working at a local center for Alzheimer’s patients. She had worked only four days and on Friday morning had gotten up ill so I called to tell them she was sick. She had a severe headache that morning. Over the weekend, she seemed to get better complaining a little of head and back pain. Took her to work on Monday but by 10:00 she called me to come and get her she was sick again. This happened on Tuesday and Wednesday also so I took her to the pediatrician.

Pediatrician checked her ears and said she had a little fluid in them and put her on antibiotics. Jeanne has chronic ear infections and we’ve dealt with fluid in her ears for her entire life so I felt really uncomfortable with this opinion. She tried to finish out the workweek. I would give her Advil at 7:00 a.m. and she would take two with her to take at lunch time so that she could get thru the day. Then she’d come home with a sick headache and sleep a few hours. Some days she would come home with a temp, but after napping would feel cool and clammy. After a week of this, I took her to the pediatrician again. Saw one of the other pedes who said "Oh yeah, it’s a virus going around and may last a week to two (she’d already been sick two weeks). By now Jeanne’s still trying to work, but I’m having to pick her up at Noon each day. When I get there, she’s sitting with her head lying on a table and wrapped in a blanket. After a week of this, we take her back to pediatrician and see yet another pede. She does some routine blood work which comes back normal and says she thinks it’s a "sinus infection". Now Jeanne’s back is hurting as bad as her head. She’s taking lots of Advil, trying to work because we’re pretty sure it’s not contagious. Sleeps a lot and eats little. Using ice packs on her head and hot water bottle on her back. Another week and we’re back in the doctor’s office. Yet another pede finds nothing wrong with her but does some more extensive blood work with those results due back in a week. I tell the pede she’s been sick all summer and we need to get this taken care of before school starts. School starts now. She tries to go the first day, but I have to pick her up. She’s sick. After that I sent her to school only half days. She runs a temperature off and on but it’s always normal when we get to the doctor’s office. Blood tests are back. Normal except for an elevated SED rate. Even though it’s double what it should be, dr. not alarmed. Says it can measure any inflammation in your body from a thorn in your finger to arthritis. Will repeat the blood work just to see if the SED rate is staying same or changing. Will have those results back in a week. Jeanne is still going to school half days. We’ve been at the pediatrician’s office weekly throughout most of July, August and now beginning September. Blood tests back again. SED rate is now more than triple what it should be. Dr. doesn’t seem too concerned, but orders brain, pelvic and abdominal MRI’s/CT scans. Those to be done in about a week.

Take Jeanne to clinic for theses tests. Radiologist calls me back into his office and says something has shown up on the abdominal scan. I asked "You mean something other than the cyst on her right kidney"? He says yes, a large mass. I’m thinking large—like golf ball sized. He calls the pediatrician, who calls the gyno. It is Friday and the gyno wants to see Jeanne on Monday.

Dr. Brown works Jeanne in before any of her regularly scheduled patients. It’s 7:30 a.m. She performs the pelvic and tells me that Jeanne has a football size mass around the right ovary. She says we have a chance that this is not cancer, but I want a gyno onc present for the surgery. There are so few gyno onc’s in Louisville that surgery can’t be scheduled for two weeks. In the meantime, CA 125 is done and is normal.

Two weeks later, surgery performed. Cancer is confirmed. The gyno onco who is present isn’t qualified for something like this and calls in a more experienced partner. Jeanne had a right oophorectomy. Now things get confusing because the gyno tells me things are really bad and I should be prepared for the worst scenario. The gyno onc tells me things may not be so bad and six rounds of chemo could take care of it. I respect the gyno, but, of course, prefer to believe the gyno onc. I don’t think either dr. has changed their opinion of the prognosis.

As of this time, Jeanne had 3 rounds of chemo, cisplatin, VP-16 and bleomycin. Got thru chemo, lost her hair and has grown it back. Physically is doing really really great! Almost seemed harder on her psychologically/emotionally. Depression set in a few months after chemo ended and the psychologist recommended Zoloft. I think the psychologist and Jeanne’s involvement with a local support group here in Louisville have helped a great deal.

Last scans have been clean. Jeanne sees the gyno next week and we’ll see if she’s more optimistic than she was this time last year.

Looking back, I don’t know what more I could have done to get her diagnosed earlier. I just am so glad we were persistent even though the Pediatarician’s office was beginning to make me feel foolish. And am so lucky that the gyno felt compelled to have the gyno onc present at surgery.

On February 12th she went to see her doctor for a sore toe and he said she sounded out of breath and thought they should take a look at her lungs. In the next few days she had some trouble breathing. It hurt to breathe deeply. She found out she had pleurisy. A few weeks later she was having some stomach pain that seemed to be in the right side of her lower back as well. She was treated for a bladder infection but while on the medication wasn't getting any better and wasn't urinating a lot, even though she was drinking lots. She also was complaining of weight gain saying her stomach was getting big but she had no appetite and was not eating.

On Friday, March 19th, Dad took Mom to the emergency in the evening because the pain in her stomach was really bad. They didn't really do anything for her and ended up sending her home. On Saturday, March 20th they went back to the emergency. This time they didn't let them leave. Turns out that Mom had a couple of blood clots in her legs and they needed to treat them with heparin before she could go. They finally let her go home around midnight that night but told her she had to come back the next day for another shot of heparin. Then they said that Mom needed to have a CT scan of her abdomen because they couldn't find what was causing the blood clots. They left her laying in a bed in the hallway for three days. She is 76 years old.

On Wednesday, March 23rd, the doctor came and talked to Mom while two of my sisters were with her. They told her she had cancer and that it seemed to be in a lot of places. At that time, they finally moved her from the hallway and put her in a room. She was in the gynecology ward as they assumed at that point that it originated in her ovaries.

A few days after her initial diagnosis she ended up having her stomach drained, they took a couple liters of fluid and tested it…then telling us it was ovarian cancer as suspected.

She couldn't have surgery as she is high risk from the condition of her blood due to the clotting. On April 6th she had her first chemo of carbo and taxol. On April 7th she stopped breathing at home and had to go by ambulance back to the hospital. She had lots of fluid built up around her lungs. We almost lost her that day. Her eyes had rolled back in her head, the heart monitor she was hooked up to was flat lining and then would start to race. Her blood pressure dropped to 90 over 48. They managed to stabilize her. She had a very hard go with the chemo. Lots of vomiting and bad sores in her mouth. She stayed on oxygen for almost 2 full weeks. They drained the fluid off her lungs and "forgot" to test it for malignancy. They said they assumed it was known that it was malignant. Excellent work from those doctors…

After reading all the stories on this site, I learned about the CA 125 test. I phoned my Mom's doctor and learned that 2 weeks after her chemo her CA 125 is at 28,670. I have never read anything about anyone's level being so astronomical. Before the chemo, her CA 125 level was at 25,000. Has anyone out there heard of such levels?

Mom is at home now awaiting her next chemo which is scheduled for May 4th. From what I can get out of the doctors, if the CA 125 level does not come down after this one, they will be stopping the chemo treatments.

I had gone to school on a Monday and I had been having trouble breathing so I called my mom and she came and got me. She called the doctor and they told her to bring me in. They did a urine test and after a few minutes the doctor came in the room, she asked me if I had a steady boyfriend and asked if we were going to get married one day and I said yes, she told me that I was pregnant,I cried for hours. She sent me to Dr.Green, a baby doctor and they took a bunch of tests there also. Every single test they took came back positive that I was pregnant. She said she didn't think I was pregnant but she thought I could have fibroid tumors. She sent me to a Dr. in Louisville Ky that dealt with ovarian cancer. They done test and paps and he told me that I had a mass as big around as my abdomen. I hadn't weighed that much at first but when I went to the doctor the first time I weighed 118 when I had only weighed 110. I knew something wasn't right.

For almost two years I have been thinking about death, about my dying, about what life would be like for John and our two adult children. It was exactly two years ago that we last spent some get-away days in this rural resort area in northern Wisconsin. Then I was energetic, fit, content with life. We hiked for hours in the woods, eating impromptu picnics. We explored, walking to the top of towers to take photos, making our way through thigh-high lake waters across a causeway to visit a lighthouse. No thoughts of death then.

Just some vague symptoms, that had prompted me to make an appointment with my gynecologist a few days after our vacation. Fully menopausal, I thought maybe my hormones needed to be adjusted. I was concerned about my thickening middle, which appeared despite my 3-4 times per week aerobic exercise. I had gotten disgusted, shopping at the mall a few weeks earlier with my daughter. Nothing seemed to fit, and I didn't like the way I looked. Looking back, I realize now that I also had been experiencing some heartburn. That was all. No other signs, no symptoms, no warning that everything in my life as I knew it would change in the several days following that office visit.

During the breast exam, I said as I always did during routine exams and at my yearly mammogram, I don't worry so much about breast cancer, because I know that's usually curable. I worry about ovarian cancer, because my mother died of it. During the internal exam, the doctor said, "Hmm, I don't really feel something, but given your family history, I'm going to order a transvaginal ultrasound." A few days later during the exam, the technician abruptly left the room and returned with a doctor, who finished the exam. He whistled through his teeth and hummed a bit, and did not engage me in any conversation until he was finished. "Well, I know you are anxious to get the results. I'll tell you what. I'm going to just call your gynecologist with the results, instead of using the usual two-day turn-around system."

I knew then.I don't remember getting dressed, or driving from Froedtert Hospital toward Alverno College. I knew then. I thought about my Mom, who died at age 54; I was 53 then. I realized that I had always thought I would be "lucky" if I lived longer than my mother did. Would I now?

I couldn't go straight back to work. I detoured to a coffee shop, and sat for a long while, not really thinking. I felt punched out. I slumped. I have no idea how long I sat there. The sure knowledge that I had cancer carved a cavern in me. Inside was emptiness, a cold void with jagged edges. Darkness. I acknowledged its presence and then went numb.

I lost focus. I narrowed my thoughts to the immediate. I could not bear to be aware of anything beyond the feel of the Einstein's cup in my hand, the smell and taste of warm, caramel-colored decaf coffee. I shoved everything else out of the way.

I thought about John and whether I could track him down where he was traveling. I couldn't tell him this on the phone. I thought about our daughter, a senior at the state university some 70 miles away. What day was it? Usually I could retrieve Rebecca's class schedule easily from the back of my mind; not today. Would she, like me, lose her mother before she ever really got to enjoy her on an adult basis? I thought about our son, some 300 miles away in another state and settling into a new apartment and new job, near the woman he loved. Would David marry Meg? Would I live long enough to see grandchildren?

When I got to the office, there was a message from my gynecologist. I called her and she made an urgent recommendation that I see the gynecologic oncologist for a surgery consult. In fact, she had already spoken to him and set up the appointment for 3:00. It was now 1:00. I debated again about calling my husband. Soon enough to share the terror.

So I kept the appointment by myself. I took in the careful explanation of the surgical procedures involved, the possible risks, the carefully-phrased need to "rule out" cancer. I took an intellectual interest in everything being explained, tamping down tears and fright. This was Friday. Surgery would be Monday at 9.00 a.m. I spent the weekend trying to reassure everybody else. Isn't it better that "it" will be gone on Monday, instead of still growing here inside me?

I was not surprised when I woke up from surgery and saw my husband's face. He gently confirmed the diagnosis.That night or the next night, maybe, very late, I woke to hear a woman screaming, sobbing, inconsolable. I listened as the charge nurse called a chaplain, explaining that a patient had gotten bad news about ovarian cancer and needed help right away. I pitied the woman, thinking it was too bad she wasn't ready for the news when it came. My own rage and tears came later, during treatment. I railed at the injustice, the bad timing. I cried for what I was losing, for what would never be.

The spring and summer of 2002 I was sick with stomach upset almost daily and I had gained more than 20 lbs. I’d been back and forth to the doctor only to be told “loose weight, exercise, take Mylanta, and change your diet”. I reluctantly accepted that advice and continued to suffer.

In early August I went camping on the Outer Banks of NC. The first evening there I thought my camping skills were rusty and I had pitched my tent in a bad spot. When I lay down for the night I felt lumps under my belly regardless of where I moved my sleeping bag. I was feeling the ovarian tumor. That is probably when the tumor ruptured.

The drive home to Maryland was horrendous. I thought we’d eaten bad seafood the evening before heading home. I was sick and forced to stop every hour or so to vomit on the roadside. When I got home I felt some better but was running back and forth to the bathroom to urinate. I now attributed my symptoms on the drive home to a bladder or urinary tract infection.

Rather than wait for an appointment with my family doctor the following week, I took myself to the urgent care clinic for my suspected urinary infection. They diagnosed me with appendicitis and sent me to the emergency room. In the ER I was given a CT scan, a pelvic exam and instructions to see my gynecologist for an ovarian cyst.

A week passed before my gynecologist had an opening to see me. When he did he immediately sent me to the hospital and performed a right side oophorectomy that evening. It wasn’t until my follow-up appointment to remove the surgical staples that he broke the news that my pathology report confirmed cancer. I was so clueless I didn’t even know that they were going to send the “cyst” out to be reviewed for pathology.

My gynecologist sent me to a gynecological oncologist for follow-up. The gyn/onc performed an exploratory laparotomy for the purpose of staging. He confirmed the original diagnoses and staging. A hysterectomy was not performed at that time because of my age.

I was counseled that the chance of reoccurrence with my diagnoses was 50/50. Chemotherapy would not improve the odds of reoccurrence. Well, heck, I choose to skip chemo. Wouldn’t you if it wasn’t going to improve your odds?

The next few years were filled with peaks and valleys of calm and anxiety; constantly waiting for the other shoe to drop, questioning my decision about having chemo. You can Google all kinds of information about the pathology and treatment of cancer but there is not much regarding the emotional side of cancer. I heard a psychiatrist on a radio talk show once explaining that many people who survive a traumatic illness suffer PTSD. It certainly explains the anxiety attacks.

In June 2007 during my routine six month check-up I was diagnosed with endometrial cancer and had a subsequent complete hysterectomy. The staging was confirmed at 1B; another early catch. Hooray!

By now I had had many cancer conversations with family members and discovered that more than one member of my father’s extended family had cancer, predominantly colon cancer. I shared this information with my current gyn/onc and he referred me for genetic counseling.

I have just begun the genetic counseling process. To uncover the family medical history and complete the preliminary questionnaire I made many, many phone calls and had long over due conversations with aunts, uncles, great-aunts and uncles, cousins, and once or twice-removed cousins. I wish my father’s very large extended family had kept in closer contact. They are wonderful funny, loving people who have all suffered too much loss from cancer.

The genetic team suspects my family has HNPCC. When I learn the results of the genetic testing in the spring of 2008 I will share them with my extended family. Starting with my generation we will be proactive about our healthcare and no one else will be lost to cancer.

I no longer have bouts of anxiety. No more bad dreams either. Being proactive about my healthcare did the trick. I’m doing something about my cancer risks and the cancer risks of my family. I am no longer a victim. I am a survivor.

I made and appointment with the Doctor for the Thursday morning at 11.00am, I spoke to the Doctor who sent me in to the Fast Trak clinic in Brighton one week later. My husband and I went to the Fast Trak clinic and was asked to have a CA125 test which I have never hear of, then a scan then asked to wait in the waiting room, within 20mins we were recalled and told to come into hospital the next day, Thursday the 30th I went into hospital the next day and had my hysterectomy on the Friday 31st awoke to be told I had Ovarian Cancer stage 111 C, all I could think of was I was going to die and I had a lovely husband and three children 15yrs, 10yrs and 9yrs, who would look after them, I was allocated a side room and the McMillan nurse came to visit which I have always associated with the end a McMillan nurse.

I was sent for chemotherapy (Carboplatin and Taxol)my first one was December 31st New Years Eve just to end the year and start the new one on a good note. After being told all the side affects I was suprised that Chemotherapy was not that bad, ok I had bad days but I was not sick or loss of appetite infact the revese I could not stop eating, now at the end of the chemo I look like a bald budda, I have been advised that I will lose this weight that most of it is through HRT and the steroids I was taking.

I am now at the end of my chemo and await the consultant's views but my CA125 is now 7.3 as opposed to 78 so I am hoping for a good outcome. The one thing with this disease is that the full truth is never given ok you get the statistics that 23% of people survive this but nobody tells you with this result or that result its looking good, nobody has said anything positive to me in the medical profession is this because the outlook is poor or are they all afraid we might sue them, well some of us just want the truth so that we can plan for our families.

This is my story I will write more as I go on into survival which I will do I am now 41yrs and will plan for my 50th.

On a routine Gyn exam Sept 2006, having no symptoms but some abdominal bloating, my GYN decided to do a pelvic ultrasound because it had been 2 year since the last one. It showed 3 cysts, 2 lime size cysts on right side and a lemon size cyst on the left. Neither she nor the GYN Oncologist I saw thought it was cancer but I was scheduled for a hysterectomy Oct.18, 2006.

Well, I woke up from surgery to hear the news - it was cancer in all 3 masses. They did all the debalking, removed the omentum, appendix, removed lymph nodes and took several biopsies. My final pathology showed a Stage 1-C, which I am thankful for being caught so early - thanks to my GYN!

As a precaution, I started chemo (taxol & carboplatin) in November and finished March 2007 - 6 cycles total. Tolerated chemo went pretty well, after the 3rd cycle, I was given Emend which was a wonder drug for the nausea and vomiting.

I knew my hair would fall out, so I shaved my head prior to my 1st treatment because it made me feel like I was more in control! I felt great, had gotten all my energy back, was doing wonderful UNTIL...

This past August was when I had an evening of vomiting and the most excruciating abdominal pain ever. It turned out to be an intestinal blockage that I needed surgery for. Luckily, it was NOT CANCER but what's called Meckel's diverticulum. This perforated and needed to be removed. While they had me open, they did washings for cells and found NO cancer cells anywhere. It was unfortunate this happened so soon but at least they were able to inspect the abdomen again and I was clear. So now, I am healing again and my energy is coming back.

I have had severe hot flashes/night sweats since menopause at age 46. I am now 53 and still sweating and not sleeping. Before my cancer was diagnosed, I tried Effexor (an antidepressant that helps with hot flashes). This worked for awhile but no longer does, so I am off it. I also took a low dose of PremPro for 2 years and in my mind, I wonder if this contributed to my cancer. My sweats are terrible and I get no sleep anymore. My Oncologist wants me to take Premarin 0.625mg and also use the Premarin vaginal creme. He feels this is very safe in women who have already had ovarian cancer and have no uterus. I am reluctant to fill the script but I have to do something to get relief.

QUESTION TO ALL OVARIAN CANCER SISTERS:
After having a diagnosis of ovarian cancer - does anyone take Premarin - if so, how is it working for you? If anyone has any advice or suggestions, I would sure appreciate it!

Thanks,
Joanne from NC

I suppose my story began in 1996. I worked as a secretary, but I had been laid off from another job, so I decided to temp. I was on a long term assignment, but I was without benefits of any sort - sick time, health insurance, all of those safety-net features of work I once took for granted as a permanent worker. Knowing I was up the creek if I became sick, I became instead a health food fanatic. I always tried to eat right and took vitamins - now I dosed myself with health food, exotic vitamins such as Picnogenol and Co Enzyme Q 10, as well as multi-vitamins, and herbs such as garlic and gotu cola. I will not list all the vitamins and herbs I took. That would make a couple of pages themselves.

I took these incredible precautions for a few reasons. First, as I had stated, I could not afford to be sick. Second, I had a history of diverticulitis. Third, I had a "tingly" feeling around the area of my ovaries. Finally, I was peeing quarts and had non-stop diarrhea

Since I could not afford to go to medical physicians without insurance, and since I could not afford insurance, I went to alternative healers because they were cheaper than regular doctors. One healer, practicing Reiki healing, told me that I was "seriously leaking energy" around my abdomen and suggested that I go to a doctor right away. I did go to a gynecologist in May 1996 (my cousin paid for the visit). I had a pap, pelvic, breast exam and had hormone levels in my blood checked. It did not occur to either my doctor or me to order a CA 125. I had no family history of cancer to speak of, I had not used hormones, and I seemed "normal". So I decided that I was probably okay and that the peeing and diarrhea were from stress. And indeed I had a great deal of stress in my life.

My assignment ended in November and once again I had to scrabble for work. In late December I found work, but then I had abdominal pain that was rapidly becoming worse. I felt like I was in a bind, pay my rent or see a doctor. I could not do both. Finally, a friend of mine dragged me to see a doctor at the Free Clinic January 6th. I told her of my history of diverticulitis and suggested that it might be that. She felt a "mass" and referred me to Olive View Hospital, one of the Los Angeles County Hospital network, for further observation.

By then I had developed rectal bleeding. When I was examined by the intake physician at Olive View I told him that I had rectal bleeding, and he ordered a sigmoidoscopy to be done within a few days. They could not, however, get the probe more than a few inches in the colon - moreover, the colon was clean - even I could see that on the monitor. Again, a "mass" was mentioned, but nothing I understood was said, except "come back in a week for a CT scan."

So I came back, was scanned, then told that my doctor would go over the results with me in a couple of weeks. During this time, I could not work at all. I could not concentrate from worry and from pain. I fell further and further behind on my financial obligations. I had to depend on friends to feed me, those times I could eat. It was getting harder and harder to eat by then. My stomach was in serious pain then, that I later learned was a symptom of bowel obstruction. At that time, I chalked it up to nerves.

Then the day of the consult. But what a disappointment - all I learned was that I was getting a gyn consult - to be done the following day. At that point I knew the news was bad. I just didn't know what it was.

The next day, I spoke to a gynecological oncologist. After a greeting she said "You have Ovarian Cancer." No doubt in her voice whatsoever. I exploded. "How do you know I have cancer at all? You haven't done a biopsy! Do a biopsy and then we'll talk about cancer!" I shouted. Her certainty upset me. Hell, at that point, anything would have. She was gentle with me, but very certain. She gave me a consent form to sign. surgery as soon as humanely possible. All I could think of was staying awake during surgery to make sure that no organs were unnecessarily removed.

Well, two weeks later I was operated on. What a miracle - only the ovaries, uterus, cervix, appendix and omentum were removed. However, I spent over 8 hours in surgery as they took out all visible tumors, and spent 3 days in ICU recovering from the operation.

I was informed that I would have no more than a 6 week window of opportunity to start chemo. And the chemo was delayed week after week after week. All I was told was that I wasn't healing fast enough by the general oncologist, but the gyn-onc told me I was. At one point I got the head of oncology on the phone and screamed that if I weren't treated, soon, I would notify my congressman, both senators and the news media about it. I also fired my general oncologist and got another oncologist on my case. For in addition to delaying my treatment, he said something I could not forgive - "we don't expect you to live more than 5 years." Well, with that quality of treatment, no one would.

Also, shortly after surgery, I had a full on bowel obstruction. I was admitted to the emergency room at 3 am, but not even observed until shortly after noon when I started non-stop vomiting. If you've ever had a bowel obstruction, you know what kind of pain was involved. I was given an anti-emetic then, but nothing for pain. The anti-emetic didn't work and I kept vomiting. I was not admitted until 4 pm, and only then was given pain killers, and an NG tube!

Well, treatment came, I went into temporary remission and all seemed well until the cancer came back. By then I had learned about clinical trials from another woman who had OVCA and applied to City of Hope for one of their trials. I was accepted, and transferred out of Olive View Hospital.

The difference in treatment is amazing. I am consulted about my treatment, procedures were explained, complaints listened to and acted upon. Even when I had another bowel obstruction, I waited no more than 15 minutes for a pain killer and was admitted within a couple of hours at most. I am not treated as the OVCA patient in Room 202, or 47 year old denying some symptom, even if it is so written in my chart. I am Ms. Millstone who blows bubbles and colors in a coloring book when I am an in patient, and the funny gal with the transfer tattoos on her bald head when I come in for exam. I share a love of garlic with my oncologist, and suggested that he tell his wife that high amounts of garlic help prevent heart attacks. In short, I am a person.

In July of 2007, I started having these really bad stomach pains in both sides in the lower half of my stomach. I blamed this on the fact of when I went to Iraq, I ate native food, which you're not supposed to do (I currently serve in the Marine Corps). When I went to the ER they hospitalized me and told me that I had Salpingitis. They gave me meds and told me that everything was going to be good now. Nope, not so much.

Between the end of August and now, I have had over 30 UTI's and have been in constant pain (that stabbing pain that doubles you over and you can't move!). So, finally i got fed up and asked to go to the ob/gyn. He does some tests and is alarmed because of my pains, all of the uti's that i've had and the fact of when he moved my cervix and did the PAP smear, I was in horrific pain.

I found out today that my pap smear was abnormal and that I have low-grade s.i.l., which i have been told, is the beginning form of cervical cancer. I have a year for it to "heal itself" before they have to do treatments on me. I'm just wondering if these severe stomach pains that I've been in isn't because of this and because the navy docs never did any tests on me, it never showed up. If anybody could please give me some info on S.I.L's or anything like that, please do.

At this time I am in remission for a little over three years. I had 6 rounds of Taxol/Carboplatin/Cisplatin. Four Carbo was about all I could take, so we switched to Cisplatin. SLS found me with NED, and I continue in my life with new attitudes and visions for which having cancer seems to be famous. This past August I had to have major surgery for pelvic reconstruction which was probably due to the lack of support from everything that has been removed.

I consider myself fortunate in my experience with the healthcare system. Firstly, for my own healing, I'd like to mention 3 names. Dr. Wong at Salem Hospital where I went for an ER visit with lower abdominal pain, urged me to do follow-up with my gynecologist, even after the radiologist diagnosed me with constipation. It is because of his suggestion that I did just that.

My visit with the gynecologist was embarrassing to me because I had taken a laxative and no longer had symptoms. She disregarded my dismissal of the urgency and sent me in for an Ultra-Sound immediately. Two masses were identified, so I was off to an MRI. From there it was a CT-Scan. This wonderful doctor, Dr. Betsy August, turned me over to the gyn/onc immediately, just to be certain that everything looked benign.

My Ovary Angel, Dr. Annekathryn Goodman, has been my doctor and my lifeline since. I needn't really give medical details, except that I wasn't diagnosed with ovca until the surgery. So, I woke up from anesthesia with a new, shocking addition to my view of myself. Very sobering. This took place at Mass. General Hospital.

I have suffered with some paranoia after treatment, finding every little symptom of anything, and thinking it may be cancer. My team has been extremely patient, supportive and attentive to each complaint. I was never discouraged or dismissed as hysterical or over-reactive. This has been very important in my recovery. Now that has ebbed, and I am returning to my normal accepting self of symptoms of aging and daily stress. Before diagnosis, I never paid attention to minor aches and pains and was hardly ever to never, sick. I am gratefully returning to that attitude.

So, my kudos to Dr. Wong, resident; Dr. Betsy August, Ob/gyn; and Dr. Annekathryn Goodman, gyn/onc, head of my team.

It is difficult to find words that even remotely describe the essence of my girlfriend Judy. Simply put, Judy was a “Classy Broad”. Judy meant so much to so many people. She was such an upbeat positive person! Judy inspired many people over the course of her lifetime. Family and friends were top priority to Judy. Surrounded by her "little" farm animals, her beloved dogs and cats, Judy created a warm and inviting home where everyone was welcome. Her two daughters Nikki and Shelby were her pride and joy. Her husband Don was the love of her life, her true soul mate. She loved her mother Molly. Judy’s life was made complete when her daughter Shelby gave birth to her grandson Austin. To Austin, Judy was simply “Mugas”. Mugas adored her little man. Judy was blessed with much insight into life. Honesty, fairness, trust, understanding and acceptance of others were values that were very dear to Judy. Judy cared very much for her friends. She was wise, caring, compassionate and very empathetic to the needs of others. Judy knew intuitively when something was not quite right, she reached out unselfishly, and knowingly to help in any way she could with out having to be asked. Everyone who knew her enjoyed her great sense of humour and infectious smile. The room lit up when Judy walked in. Judy loved life. Judy may not be with us physically anymore, but her spirit will live on forever. She will be forever cherished and will live on eternally in the hearts of the many people who knew and loved her. Judy, thank you for sharing your life with us. We all miss you.

P.S. - My girlfriend, Judy died of Ovarian Cancer on August 17th., 2003. Before Judy was diagnosed with ovarian cancer, we both knew very little about ovarian cancer and gave it no thought. The purpose of this letter is to bring awareness of ovarian cancer to as many women as possible.

In the previous months before Judy was diagnosed with cancer, she did not feel quite right. Judy was always an energetic person, but she started to complain about feeling tired and having a lack of energy. She was concerned and frustrated. Judy noticed changes in her bowel habits, her back that was always a problem, seemed to be bothering her even more; she was having headaches and sleep problems. She had some “spotting” despite being post-menopausal. Something was not right and Judy knew it. She went to her family doctor more than once seeking help and answers. It was suggested that she was suffering from depression. Judy definitely was not.

Ovarian Cancer can strike at any age, but most cases affect women between the ages of 50 and 75 years. The average age when ovarian cancer is detected in women is 56.3 years. Unfortunately, 75% of ovarian cancer cases are diagnosed at advanced stages where survival rate is low. This year it is estimated that in Canada, 2,600 women -- one in 70 – will be diagnosed with ovarian cancer. 1,500 women will die from this cancer in 2003. Ovarian cancer has the highest mortality rate of all women's cancers.

Some risk factors are familial link for ovarian cancer in 10% of cases, never being pregnant, family history of breast, endometrial or colorectal cancer, history of infertility and early menstruation and late menopause.

There is no single early detection test available such as the mammography in breast cancer or the colonoscopy in colorectal cancer. The Pap test is not a test for ovarian cancer. Knowledge is the most important and the best weapon in the fight against this disease. Awareness of ovarian cancer signs and symptoms is most important.

Signs and symptoms are:

• Generalized discomfort in the abdomen, bloating, pelvic pain.
• Persistent but vague stomach upset – gas, feeling of nausea, indigestion.
• Non-specific bodily discomfort that persists or a feeling of uneasiness that you cannot explain.
• A feeling of early satiety -- feeling too full for no valid reason.
• Loss of appetite.
• Unexplained changes in bowel habits … feeling constipated or needing to urinate frequently in the absence of an infection.
• An unexplained weight gain. “Swelling in the abdomen with no pain” or unexplained weight loss.
• Pain during intercourse.
• Fatigue unrelieved by bed rest.
• Back ache.
• Sometimes unusual bleeding from the vagina.

In a survey done in 1999, it was found that less then 1 out of 10 women surveyed had no symptoms before diagnosis. In other words, more than 9 out of 10 women had one or more symptoms before the cancer was detected.

If you have any of these symptoms and they persist for longer than two to three weeks, make an appointment to see your family doctor immediately. It is important though to remember that these symptoms and signs are not unique to ovarian cancer. If after seeing your Doctor, you still have concerns, go see him or her again to discuss these concerns, and after that if you are still having questions, doubts or concerns seek another opinion from another doctor or insist on a referral to a gynecologist. Be persistent!!

My girlfriend and I had many intimate talks while she was fighting to live. The one talk that stands out the most is when she said to me, “ Girlfriend, Get to know your body. Be aware of changes, follow your instincts and if something does not feel quite right, do not hesitate to go see your doctor. Ask questions, demand tests. Be a “thorn” in your Doctor’s side."

ALL WOMEN SHOULD HAVE A YEARLY RECTO-VAGINAL PELVIC EXAMINATION.

For those women who are at high risk of developing ovarian cancer, a CA125 blood test with a transvaginal ultrasound may be used as a screening tool.

If even one woman’s life is saved because of this letter than Judy’s fight against ovarian cancer will not have been in vain.

Exactly what is a Recto-vaginal pelvic examination?
ANSWER: In a full recto-pelvic examination, the doctor feels the abdomen for hardiness or lumps and for any signs of enlarged ovaries, uterus, bowel or appendix. He or she will ask you if you feel any tenderness. It should NOT hurt when your doctor is conducting this examination. It may feel a little uncomfortable but you should not feel pain.

The doctor will exam the external surface of the vagina feeling for lumps or sores.

Next, a speculum, a device that holds the walls of the vagina open, will be inserted. The doctor will exam the vaginal walls, and your cervix and does a Pap smear.

This is followed by a manual examination. The doctor inserts two gloved lubricated fingers into your vagina while pressing gently on your abdomen. This is how she or he checks out the surface of your uterus, ovaries and fallopian tubes.

About two weeks after getting the news, she had an appointment to get rid of everything that made her a woman. What we didn't know was that the tumour had already grown large enough to attach itself to her bowel. The cancer had already spread to other parts of her body. The operation went as planned, or so we thought. After the operation, we went to see her and she was in very good spirits. She didn't even complain of pain but that was my mother; anyway you never could tell if she hurt or not.

A little while later she was able to go home. I will never forget the tone in her voice when she went home, she was like a little girl in a candy store, so excited to be there. Then the chemo started. It was six months of once a month treatments. The chemo treatments were two and a half hours south of where they lived. So, once a month my father would drive her down there. My father. Now there is a man of every woman's dream. He is the type of man who would bend over backwards for you and not ask questions. My mother was so lucky to have him.

My mother was receiving the strongest chemo you could get because she had the fast action cancer. I remember during those six months she was tired and sick from the chemo. Some days she would just feel tired and other days she could barely get up in the morning but the doctors said if she didn't have the chemo she would not be with us today.

After the six months of chemo, she had a two-month break and then the radiation began that was across the country. It took a five-hour plane ride to get there. I was writing her e-mail letters all the time. She seemed very happy in her e-mails. My mother had two months of radiation and when she came home, she was a brand new woman. She had a new outlook on life. She and I bonded the way I have always wanted to bond with her. It was the best time of my life. Then three months later she started getting sick again. We were told it was a side-effect of the radiation. I remember being on the phone with her telling her to get to a doctor but she would just come back with, "I just got back from there a week ago." My mother was very stubborn.

Then there was a phone call I will never forget. I was talking to her and she didn't sound like her; her words were very slow and she was slurring. When I got off the phone, I said to my sister, "Mom does not sound right." That night she went back into the hospital; after many tests we found out why she sounded the way she did. Her calcium had shot up through the roof. The doctors said they had never seen anyone alive with that high calcium before.

The day she went into the hospital, I was going out of town for three weeks to see a friend, so I gave my sister the phone number and told her to keep me posted. After about two weeks of me being at my friends, my mother was moved to the same town I was in, to get more tests. I called her almost every day to tell her how I was doing and to see how she was. Then one cloudy day my sister called me and told me that my mom had three days to live. I broke down in tears on the phone. My friend was sitting beside me. She held my hand not knowing what was said to me. After a while, my sister and father came to get my son and I. Then off we went to the hospital to go see my mother.

When we got there, I didn't know what to expect. We walked into her room and the woman lying in the bed was not my mother. It was some other woman who was very pale and thin. I didn't want to believe that the woman who was lying there was my mother. I sat beside her. My sister sat beside me and my father sat on the bed. She looked at us and said, "I have no I idea on what's going on. They said if this chemo doesn't take then there is nothing more that they can do." Thankfully that chemo worked. But the chemo was killing her blood so she didn't want it after that.

Two weeks later, she was transferred back to the hospital close to her home. After a few days stay, she was allowed to go home. It was nice seeing her outside of a hospital and it was especially nice seeing her in her own element. She was home for at about a week. Then one day, the following week, my mother got up to go to the bathroom, fell down and she could not get back up. My father came in to help her up and put her back in bed. Then my mother said to him that she could not move and that she thought it would be best to go to the hospital.

I called my father that day and I knew something was wrong the minute he answered the phone. He had a panic tone to his voice and I knew it was mom. I asked him what was going on. He said that mom couldn't get out of bed and that he was going to call 911 to get her to the hospital and that's what he did.

My sister, who was out with her husband, had left their cell phone on the charger. I didn't know the phone was at home. I was calling her for two hours. By the time they did get home I was in a panic wondering where they were. My friend had come over that night to watch movies, but instead ended up looking after my son. She didn't mind, given the situation, so we went to the hospital and found our mother in the emergency room.

When we arrived we all sat around her bed. I was sitting on the left side of my mother. My sister and her husband were sitting on her right side; my father was sitting at her feet. We waited for the doctor.

The time goes by so slowly. I watch nurse after nurse walk by wondering if one of them will come to my mother's bedside. All I can do is sit there while the smell of the hospital makes me feel ill. It feels like years of waiting for someone, anyone to come see my mother. I have never had a stronger feeling of helplessness in my life. I watch a woman with black hair who was wearing black pants and a white and black striped shirt walk by. I don't know why I chose to "study" her as she walked by. I guess it was to pass the time while waiting for a doctor. Then I see him. The doctor; as he walks right on by to another bed. Why does he not realize that my mother is the one who needs him? I am finding it very hard to sit still. I want to stand and to sit. I am not sure what to do with myself so I sit next to her holding her hand, hoping that someone will be there soon. As I look into her eyes, I do not see my mother, the woman who raised my sister and I. I am not sure what I see. When I look up, I see more nurses walk by with their shoes squeaky on the emergency room floor. Then I look at my father and I take notice of the look of despair in his eyes. The woman lying on the bed, my mother, his wife, was so thin. Then I look into her eyes and I feel a sense of calmness, even when my sister and I are crying ... my mother is so calm and in her eyes I see the look of "hope" comforting me letting me know that everything will be fine . then he walked in ... the doctor.

I have never felt such an overwhelming feeling of "relief." He says to her that he will do blood work and keep her in over night. As my sister, her husband, and I depart, we all give her a kiss and tell her that we will see her tomorrow.

The next day we are driving to the "Doctor's house" (that's what I told my son the hospital was), to see my mother and I feel the tears coming. I try to choke them back but I am unsuccessful. Walking into the hospital through the long hallway to the elevator, it seemed the hallway got longer and longer with every step I took. Finally, we reach the elevator and we stand there and wait. When the door finally opens, we walk inside, not a word spoken since we left the car. We get out of the elevator, go to the nurse's station, and ask if it was okay to go see her. "She is in room 203" one said.

As we leave the station to walk to her room, I feel the tears coming on again. She had a private room. I walked up to her bed and there she was. My mother started crying. She looked at me and said "You be a good girl." I could no longer hold back my tears. I looked at her through my watery eyes and I said, "Don't you say your goodbyes, don't do that". I took her hand and rubbed her index finger. My sister was behind my father who was sitting in a chair beside my mother. We tried to talk about happy times but I knew that we were all thinking about the outcome of this terrible situation. Just like in the emergency room, I have never felt so helpless. I could not do anything. I could just sit there and watch my mother drift away from me.

After a week, she started getting day passes and my father took her for nice drives and then home where she loved to be. Because at her home, there was a creek with a wooden bridge that my father had made out of a fallen tree. It was so beautiful and peaceful. My mother loved to sit beside the creek on the bench and just listen to the water running over the rocks; that was her "happy place". A place where she could forget what was going on in her life and just relax.

It wasn't long before she had to go back to the hospital because her health was slipping away from her. She would be in the hospital on her IV for a couple of days and then would be given another pass. On Friday, August 15, she got a three-day pass to go home. That night, my sister slept with her in the bed and my father slept on the couch. Every hour during the night, my sister was up taking her to the bathroom. In the morning, she started hallucinating and my sister said that my mother could no longer stay home, so they called the ambulance and took her back to the hospital.

That Saturday night my sister took me to see her. My mother had slipped into a partial coma. I walked into the room. I saw my mother lying on the bed motionless with her eyes open. I had a book in my hand ... it hit the floor; then I saw my mother's chest move, so I slowly bent down to get my book. I walked over to her bed, sat beside her, and started crying. I held her hand and said a "special" prayer for her.

After about thirty minutes or so, my mother's best friend came in and she gave me a big hug. We just held each other for a while. I told her that my mother had spent the previous night at home and that my sister had been up a lot with my mom during the night. My mother's best friend then told me, that that night she had had a very restless sleep and that she kept waking up about every 45 minutes. So, I told her that it was probably my mother telling her to come see her and that is what she did.

We both sat there for a while and then she said we should go for a walk to move our legs so we went down to the cafeteria. I had a muffin and a soda and she had chips. We just sat there talking about my mother and we both knew that any day it was going to happen.

We both decided that it was time to go back to her room so we went upstairs to see her again. We sat beside my mother talking about the past and the happy times we both shared with her. I didn't know if my mother knew that I was there or not, so her best friend asked her to let me know. My mother opened her blue eyes wide and looked directly at me. I was very relieved, because I then knew for sure, that she knew that I was there. I took her hand in mine and asked her to squeeze it and she did. Then her best friend said that she was going to leave to give me some time alone with my mother. She waited for me at the nurse's station. When she left, I took my mother's hand again, kissed it, and told her that I loved her. She made some noises like she was trying to communicate with me. After a few minutes, I had to leave; I stood up, kissed her forehead, and told her that I would see her later. I never said "Good-bye" whenever I went to see her. I left her room, met her best friend at the nurse's station and then we left the hospital.

The next day I was watching TV and my sister came downstairs and told me Mom was gone. The news didn't hit me as hard as I thought it would. We all knew it was going to happen. We just didn't know when and that was the hard part for me ... not knowing when. I felt relieved knowing that my mom's long hard year of hell was finally over. My sister called and asked if I wanted to see her because she was still in her room. I said that I wanted to, not knowing if I could or not.

As my sister was driving me there, I got butterflies in my tummy and I started feeling ill. My sister parked and told me she would catch up, so I walked into the hospital down the long hallway telling myself that I could do this and that everything was going to be okay. When I got to the second floor, my mother's best friend and her husband were there. She gave me a huge hug and I told her that my mom had "come to see her" on Friday night. She told me that my father was in her room with a pastor, so I walked in, gave my father a huge hug, and started to cry on his shoulder. The pastor said he was going to leave us alone and he left and shut the door.

When I let go of my father, I looked at my mother. She looked so peaceful . like she was asleep ... although she was not going to wake up. I sat beside her and got up enough courage to rub her arm. My father went to the other side of the bed, kissed her forehead, and told her that he loved her. I also went to the other side of the bed and rubbed her hair, which I never thought I would do; but for me, seeing her lying there helped me to deal with this terrible thing. I bent down and kissed her forehead, and said to her, that I knew where ever she was; she was at a better place. I told her that I loved her and then I left the room.

      1) The tender area on the right was no longer by itself; the left side had joined it. This tenderness did not hurt unless I pressed on it, or rolled over during the night. Once I became aware of them I would check during the day to see if they were still tender to the touch and they were. When I first noticed the right one, I thought it had something to do with menopause since I was 49. So I kept feeling to see if it had changed.(In June I had sort of blacked out, so I had the test (FSH?)to see if I was menopausal. That showed I was not.

      2) In late April of that year, I was in the Pegasus Parade during Derby Week as part of the 15th District PTA's entry celebrating PTA's 100th birthday. We were to wear matching T-shirts and khaki pants. Since I had no khaki pants, I had to buy a pair. I was able to find a nice pair that fit perfectly in every way and even had a little extra room at the waistline, in case I needed it later ( I needed it later, but it wasn't nearly ENOUGH!!) They were size 10. By the end of August, when I tried to include these pants for a trip, they lacked at least 4" coming together at the waistline. I knew my waistline was growing over the summer, but these pants gave me a specific marker. Had I been heavier at the beginning, I might never have noticed this difference. When people would ask me to meet them for lunch during the summer, I'd say, "I probably shouldn't go; I feel I'm getting so fat." (Then I'd still go, but feel a little guilty!) I was usually telling this to my walking partner--we'd meet at 5:30 A.M. for a 3-mile walk. Sometimes I'd meet another friend for a 2-mile walk in the evenings. When I told my internist that I was walking 3-5 miles a day and still gaining, he was quick to tell me how my metabolism could change and he whipped out the sheet that we've all seen telling how much time one must spend on different activities to lose one pound. I told him I understood all that, but still felt something was wrong, because I weighed more than I did when I had my 11-pound baby. His response--"and you're not even going to have anything to show for it this time." I'm proud of myself for not backing down, despite these and other sarcastic, condescending comments. I said I still felt something was wrong. He said "well, if there is something wrong in the area you're indicating, it has to be the bladder, colon or ovaries--that's all that's there. "

Since he had told me over a year before to take Metamucil, and had put me on Pep-cid in February, I was sure it was my colon. I started to ask him about the different colon tests. That's when he got downright hateful. I felt ill-prepared to get into an argument with him about those tests, since I knew so very little, so we moved the discussion to the ovaries. My thinking was--I'll eliminate the ovaries (and probably bladder) as possibilities, learn about the colon tests, then throw my energies into getting that properly diagnosed. So we decided I'd go to my ob-gyn and see if there was a problem. Since it was about 5:00, I knew I'd get the answering service if I went home to call, so I went straight there. (Before I left the internist's office, he wrote down more directions for taking Pep-cid.) When I told the person behind the ob-gyn's desk that my internist and I thought I should be checked, she insisted it was not time for another check-up--I was checked in December and this was only September. I kept saying that I really felt I needed to be checked. The person who did ultrasounds one day a week (Wednesdays)happened to be there. Although I had never had an ultrasound, I had seen her before and she remembered me. She came over and I explained the situation to her. She said maybe we could do an ultrasound. I said,"Good, can we do it this Wednesday?" (This was late Monday, Sept 8). "Oh, no, we're full--we couldn't possibly do it then." I knew I needed to get that off my mind so I could focus on my colon, so I just keep asking nicely if I could come any time after 12:00 on Wed., no matter how late. Finally she said "well, come on in at 3:45 this Wednesday." I felt a little guilty then and said "are you sure? I know I've kind of insisted and I don't want to crowd your schedule too much ." She said "No, come on in then because we're booked till October 29." On Wed. Sept 10, when she did the US, she had trouble inserting the probe.

To sum it up, they sent me over the next night for a CT scan, with the words "suspected 11 cm. mass" written on the sheet. On Sept. 22,I had surgery and was later told I was Stage llB. In the op report, the surgeon suspected it might be Stage lll, but tests showed it was only in the two ovaries. They had also removed the omentum as well as some lymph nodes. I realize how fortunate I am and want to do everything I can to help educate others. A year after my surgery, I moved out of a 31-year marriage. For one thing, my husband was extremely critical of any volunteer work I did and I knew I needed to work on OC awareness. In general it was just a very negative atmosphere, not helped by the fact that he retired in 1991 at the age of 51. Although the last child had left home in 1996, I waited until they were all finished with their education and then I moved. They are now in Santa Barbara, Manhattan, and Thailand (Peace Corps).

For the most part, I feel great. I get blue sometimes and I miss my children. But I know they're doing what they need to do and so am I. I stay really busy. Another OC survivor and I started an ovarian and other gyn cancer group in March, Kentucky Silent No More. It is advocacy as well as support. I am also on the board of a general cancer support group, Friends for Hope.

Besides the tenderness in the area of both ovaries, the waistline increase and the indigestion, I think I had many other warning signs. I had bloating, distention, pain during intercourse, frequent urination, just about everything except bleeding, but never was an US mentioned or any special concern shown on the part of my doctors. Years before, I had an abnormal Pap and was also diagnosed with irritable bowel syndrome. (After the surgery, when I questioned the doctors on why they hadn't been able to feel especially the larger tumor, they told me it was "suppressed.")

I'd like to add in closing--LISTEN TO YOUR BODY!!! I think that's the most important advice we can pass on to others. Also, remember it IS YOUR body and that the doctor is working for you. Don't hesitate to question or even change doctors. Most women who have heard my story say that their mothers would NEVER have pursued it as I did. If you can't push for yourself, think of your daughter or granddaughter and do it for them!

The Story of My Battle with Ovarian Cancer:

Remember, every day, and every way, you are a miracle, and a force to be reckoned with! (Author Unknown)

Time alone heals nothing ~ only people heal each other. (Author Unknown)

We are each of us angels with only one wing. And we can only fly embracing each other (Luciano De Creschenzo)

To My Fellow Ovarian Cancer Survivors, and Others

My name is Julie Elizabeth Simon. I have survived ovarian cancer since 1989. No one I knew had ever had it -- not any of my family, friends, or coworkers. To the best of my knowledge, I am the first and only one in my family to have contracted ovarian cancer. I was twenty-eight years of age at the time. To contract ovarian cancer at any age, especially someone as young as I was at the time, is rare. To survive it, rarer still. I am healthy now, but the memories of fighting for my life still haunt me. I was a new employee, working in a local factory at the time. As is common with most women who have/had ovarian cancer, my symptoms were extremely vague. No big red flags suggesting the dreaded "C" word ~ cancer. And at that time, having known nothing about ovarian cancer (except that Gilda Radner had died of it 6 months prior to my diagnosis) or any cancer for that matter, I attributed my symptoms to other, more common everyday ailments. I was experiencing a nagging, ever-increasing fatigue that no amount of sleep seemed to help. I thought perhaps it was my new job, which was pretty physically taxing, that was the cause of it. I had been having what I thought were two very uncomfortable episodes of "bad gas," and other vague abdominal discomforts that I attributed to nondescript gastrointestinal problems. Also, I had bled twice between two menstrual cycles, something I'd never done before. My mother actually had suggested this might be early onset of menopause (!), but I almost dismissed that idea since I was only 28. But, what if she was right? After all, she said she'd had an early menopause. But it wasn't until years later, after her death in 1993, that I found out she had been lying about her age ~ she had sliced off 15 years!

When I saw the family doctor, he ordered lower-abdominal/pelvic area sonograms, the results of which revealed two large cysts ~ one attached to each ovary. Also, he discovered my uterus was tilted, and said if I became pregnant, the fetus might not survive past the third month ~ would most likely spontaneously abort, and therefore wanted to correct its position, to enable me to have children. While comparing the sizes of the cysts to fruit, my doctor described them as one being the size of a grapefruit, the other, an orange. Also, in comparing them to a pregnancy, he stated they were comparable to a four month fetus, in their combined size and weight. He told me these type of cysts are normally benign ~ in and of themselves harmless ~ but that as they grow, they would be taking up massive amounts of space in the cavity of my abdomen and begin squeezing and pushing against vital organs. If my organs were to get twisted and tangled around the cysts (a very real and scary possibility), the cysts could strangle them, cutting off blood supply and my organs' ability to function, posing a serious threat to my life. My doctor wanted to get them out of me, so surgery to remove them, and also to reposition my tilted uterus while he had me opened up, was advised, and my doctor scheduled my surgery for Wednesday of the week following the visit. He gave me no indication that it could become an emergency situation.

On Monday of the following week, I woke up with severe pain in my abdomen ~ it was also distended and somewhat hard. I got dressed (whenever I look back on this experience, I can't believe I did this) and walked the three blocks from my house to the factory to work anyway, figuring it would just go away on its own, like the other times it had occurred. About 11:30AM, it got so bad, I had to stop working, call my family, and have someone pick me up and drive me home. This time it was different ~ worse than before, and I was really frightened. My stepdad arrived at the factory to take me home. It felt like an eternity waiting for him to show up. The only standing position I could even remotely be comfortable in was in a bent over stoop ~ it was just too painful to my stomach for me to stand straight, and no one offered me a chair to sit in while I waited. By the time I got home, I could only lay on my back, with my knees bent up. Laying my legs flat made the pain completely intolerable. My mother called our family doctor, who told her to take me to the emergency room of Thorec Hospital. By 7:30PM that night, after a blur of endless hours of pre-op preparations, tests and being told by my doctor that he believed my problem was being caused by one of my cysts twisting just as he had thought they would, I was in the operating room, about to have the first surgery of my life. I was so scared, but had no energy to even experience the physical aspects of fright.

I awoke the next morning overwhelmed