Suspecting something hormonal she went to her OB/GYN in February 2009. That doctor only ran blood tests and did not examine her. The diagnosis was chronic fatigue syndrome and estrogen umbers that were a little low. Lea Ann was given a low dose of estrogen. The estrogen did nothing for her symptoms so she quit taking it after a short time.

Lea Ann continued working as a 3rd grade teacher in spite of her discomfort. She used her rolling teacher chair as a walker to get around the classroom. Her periods stopped in March and by May she had lost almost 50 pounds. She made an appointment with a new neurologist for early June so she would not have to miss a school day. The doctor reviewed all her symptoms and told her something was wrong and MS was not causing most of her trouble. Her primary care doctor ordered a body scan that showed a large tumor on one ovary, several tumors in her liver and 2 tumors in one lung.

Lea Ann was referred to an oncologist at MD Anderson in Houston, Texas. She found out she has stage 4 ovarian cancer. Chemo began in July. She had some trouble with the drugs, some reactions and poor blood numbers caused delays. By September the doctor ordered another body scan to check the tumors. The tumors had grown in spite of the chemo. Lea Ann was so weak and the cancer so aggressive the doctor thought no more could be done. She had 3-6 months.

We had all been so full of hope. Lea Ann has 2 kids, ages 6 & 3. This was horrible news.

Lea Ann was admitted to hospice care at home on September 21, 2009. She has good days and bad days. She is in the last stages now. We pray for a peaceful passing.

Still today, less than 20% of ovarian cancers are diagnosed in early stages, primarily one of luck or happenstance. Ever-present are the realities that ovarian cancer is a disease most often en-shrined in significant suffering. This is our past and this is our current reality.

Reflecting on our women’s most intimate and unpublished thoughts, feelings and opinions tells, ‘In Their Own Ovarian Cancer Words’, what still has not and is not being heard. This is not the ‘cute’ side of ovarian cancer, although there are moments. Each day brings a kaleidoscope of emotions. With each passing day, the struggles of the fine line between Hope, Reality, Wishes, Expectations and Dreams remain.

We speak as one without boundaries and indeed in many respects ovarian cancer IS the silent killer. Against our will and with significant sacrifices, this ovarian cancer invariably defeats the body and the spirit. I challenge you to listen, as we have, so silently, for so long. A decade of intimate involvement with ovarian cancer women, their caregivers and communities, has most often elicited truisms that stand out. There is Trust between Survivors & Caregivers and secondly, there does not exist, in our world, an ‘ordinary’ ovarian cancer woman.

Trust between ovarian cancer Women and Caregivers is: Hope with More.

Should we choose we might learn much based on these personal conversations. These few words represent a microscopic-sampling of millions of words and thoughts - all valued - all cherished – sometimes dismissed. Sometimes too difficult to b/hear. Sometimes with a huge sigh of relief and humour.

In our communities, many moments are spent living-with-ovarian cancer, often through the eyes of others. As a tribute to our ovarian cancer women, living-with or in-spirit, these are their words to you with that special privilege of Trust and my own personal admiration… in their own words. Some are stunning. All are real.

Age: A: Ovarian cancer for xx-something ‘dummies’. L: Older than whom? I: How dare they write me off. S: I have wished it was me, not her going thru this . Though I am younger and could be stronger, the truth is I am such a coward compared to her.

Angels & Hope & Friends: B: I am alive today because of my guardian angel (an ovarian cancer survivor). B: Spent all day in emergency because I was having a lot of trouble breathing. Good news no heart attack, no stroke. R: Please visit me today as I think this is it…. Please visit me today as I think this is it….(X many) … Look after yourself and when you have time, contact me at: 1 – 800 – HEAVEN ext R … Message to R: The line has been kind of busy .... Y: Friendship therapy is something that has not been explored by the medical community, but it is important for cancer survivors. When I was on chemotherapy, I might just sleep over some days because during those days I was too sick to eat or get up. I was surprised I was enjoying not only the good companies, but also the food when other survivors came to visit me. L: …will be shutting down the computer now...we’ll see each other completely on the other side. C: I agree, let’s go, we can. (do this) C: I think I will lean heavily on philosophy as I get closer to dying. It's that or religion. There's always food! Maybe I'll just eat my way through the fear of death! S: I have to say that I am not being very gracious here and at the same time not feeling that I should apologize either. It makes me feel that I am supposed to be wishing you the best when all I really am wishing for is that you could stay.

CA125: S: I was 3x years old when I was diagnosed…. I have never had a CA 125 done to my knowledge. S: It doesn’t matter what the research on the CA125 says - it’s all we have.

Humor: J: (Dr.) said if his wife was going for (treatment) this is who he would send her to. I hope he likes his wife!!!! S: I should have read the bio first - psychiatry and 'suck it up' don't really go together. S: Thanks for living so long! (woman with 150~ + chemo/multiple surgeries TO woman with no recurrence) L: This disease may have taken my ovaries but has replaced them with a ‘set of balls’.

Husbands/Partners: D: I watched, as the verdict was read, a tsunami-like wave pass right over my wife’s head, leaving her completely stunned.

Knowledge: A: Ovarian cancer for xx-something ‘dummies’. (worth repeating) S: In order to be taken seriously, we (patients) need to understand everything about ovarian cancer. C: I decided that starvation is the easier death by far…. B: I once read that ovarian is the most complicated cancer, so I figure that I (and the rest of us) must be really special.

Impact: B: “You need a surgeon and you need one now”. I left his office naively thinking that something would be done and that we could go back to trying to have children. L: (upon my death) please thank everyone in our group...they are so special. R: (favourite quote) "Since my house burned down I now have a better view of the rising moon." F: I always wonder which (ovarian cancer friend’s) death will put me over the edge. I think I am close. Value and Sense of Worthiness: K: I feel I am nothing for what this disease is doing to my family (control)….I am not a nothing...I am really a somebody...somebody with ovarian cancer. L: Let me tell you what is on my mind without cutting me off with "You are so negative!” It is not that I am being negative, these are the facts and I am being realistic. D: (word games) I Am No Thing. I Am. Not a Thing, or a title, nor am I a summary of accomplishments. I am No Thing because I am not static, not uniform, not in a box, not a disease, not a political party. I am not a snapshot. C: (published) “Devaluing a Survivor’s Challenge”

This is a woman whom 8 yrs prior had a kidney transplant. I was hoping since we had this hereditary disease, maybe somehow we were spared. Well, guess again. So, luckily for our family (my brother and I specifically), my Mom is a fighter. She was ready for surgery almost immediately. Removal of the ovaries was first.

By the grace of God, my Mom is blessed with 2 awesome sisters! Both rushed to be with her right away. My Mom does have a significant other, but like many men, really do not know how to deal with it. So he does what he can, stopping by for support and and helping financially. He loves her dearly, that we all know!

Meanwhile, my Mom lives upstate NY, so for her surgery and treatment, she ended up having to go 2 hrs away to NYC. To her comfort though, she was among some of the same doctors which performed her kidney transplant. They were needed to monitor the amount and combo of the chemo, so as to not ruin the kidney! Jeez.

All seemed to go good the first round of chemo. We all tag-teamed it together. My Aunt Sue first for surgery, with my Aunt Arlene, Aunt Arlene 2nd, for her first round of chemo, my Brother Scott 3rd , me 4th and then last my Mom's great friend Sandy. During that time, it was super fun too. For my Mom's chemo, we had to go to NYC, well not too shabby when the patient felt good enough to be a tourist at the same time. Eating out, seeing shows, etc..too cool. I will be forever grateful for these times!

Once it neared the end of that round..tests were taken and all seemed good to go as far as stopping chemo.

Well, spots showed up elsewhere as well as her brain. Man oh man. So radiation was done. More are on the brain now, she has since had radiosurgery also. Awaiting tests which are coming in October.

The beautiful thing is, my Mom got to Illinois for the 2nd round of chemo she ended up needing. My Aunt Sue works as a nurse at Northwestern Hospital at Evanston. Wonderful that my mom has had the care she deserves, the doctors in Illinois thought it smart not to do more debulking right away and go for more chemo..proving well. My Mom is heading home for 2 weeks, to be with her friends and Bernie for his 75th birthay. She will return to Illinois for an MRI and another CT scan…fingers are crossed!!!! After that, I am hoping and praying my Mom is heading back home to enjoy many more years of her life!

She has now tested for Genetics..it is genetic. We had thought it came from nowhere. My Aunt Arlene, 1 yr after my Mom's diagnosis, she too has it. Hers was caught sooner..so hopefully all goes well here too!

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)

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!

My story begins on a misty evening back in November 2008. The 2nd to be exact. I know this because I had to leave a Rascal Flatts concert early due to some pretty severe pains I was having during the show.

We left the venue in a hurry because I just wanted to go lie down. My husband, Jon and my friend Lisa were insistent on my going to the emergency room. But…me being stubborn insisted on, NOT. I offered to go home and take some bowel cleaning agent to see if this would help relieve the pain. It did not but I was afraid they would tell me I had some bowel movement problem or worst, gas. I didn't want to be laughed right out of the hospital. Sometimes I wished I had gone. Not that would have made too much of a difference.

I continued with this pain in my side for another eight weeks or so living on Tylenol and motrin. Never seeming to find the time to go see my doctor. I own a Beauty Shop and the holidays were arriving. Business was good and getting better. Leaving me with very little time and the time I did have I was too tired to go anywere.

Christmas was over and I finally got frustrated enough with the pain that I picked up the telephone and called my family physician. He took me the next day.

After arriving and trying to explain the pain I was having in my left side which radiated down my pelvic area and lower back to my nicely padded seat. He scratched his head, leaving me to wonder whether he had any idea what I was talking about. Well he didn't have any answers, so he ordered a few test. I guess he thought it was all related to my womenly parts, sending me for a pap smear, a mammogram, an MRI of the back and of course the test that revealed it all an ultrasound of the pelvic area and abdomen.

If there was one thing I would like to see the medical profession do for women it would be to make ultresounds a routine test along with Paps and Mamo's. Anyway, my Pap test came back fine as did the mamogram. If the ultrasound had not been done they may not have found the tumor which was attached to the colan wall thus causing the pain I was experiencing.

A week later, I return to my doctor, for the results of all the test that had been done. He tells me they had found something on my left ovary but was not sure if it was only a cyst. It was very common thing for women to have these cyst and they usually erupt on their own. Not knowing for sure he orders another ultrasound after I completed my next menstrual cycle. By the way, FYI, I would do a pelvic ultrasound over a mammogram anyday.

Again, we get the same results. Something there. He sends me to a OBGYN to confirm, it is a mass. But whether it is cancerous or not, she does not know. She orders more test. Now she orders a CA-125 test to test for cancer.

Another week passes before I see her smiling face. She does not believe it to be cancer because the CA-125 test came back negative. She suggests that we do a total hysterectomy since I'm pass the child bearing years and I had a few cyst on the right ovary. At this point we just needed to relieve the pain. I agreed with the same confidence in which she had.

It was all set. We were glad everything had indicated no sign of cancer. Surgery would take place on March 10th. Sure I was nervous but I couldn't wait to be relieved of the pain I had already endured for some five months. I knew I would be out of commission for a few short weeks, but then life would get back to some sort of normalcy.

Well, God had other plans for me. He had been trying to tell me to slow down for quite some time and I was just, well, simply defiant. Now he was gonna force me to. Boy and did he. Can't quite figure it out yet, but there has to be some resoan to this madness.

I was official, On March 10th,2009 I was informed that the tumor that had been found was indeed cancerous. Still thinking, they had caught it early enough left me with lots of hope for a recovery. I was thinking to myself, it's not such a bad thing and I'm young and healthy except for the tumor, which they had removed. I thought, I'll be fine, thank God they found it early. We'll take things one day at a time.

Obviously, these doctors were quite concerned. Only days after my surgery thay had me running here, and there, and everywhere, for this test, and that test, leaving me no time to rest up from the surgery.

By this point I had been referred to an oncologist. I went back to see her a few days later for the test results. Not good, not good at all. She sat me in her small, white, very cold office to give me the news. She tried very hard to break this news to me gently but no matter what she said, or how she said it, took me by surprise. There is no one on this earth that can understand being told you are going to die unless you've been down this road. A gut wrenching illness just flows through every ounce of your being.

I left her office in a very dark state of mind. Can't even imagine what it must have been like for my husband to hear that he will lose his wife and not grow old together as planned. He held up well, for me I'm sure, telling me not to give up hope and cancer treatments have come so far, I'll be around a long time. I love him so much for that. He still to this day reminds me to stay strong. Don't ever give up.

I have lots to live for, a very beautiful daughter, however old she gets, who needs me and a very sweet eight year old granddaughter who I so very much would like nothing more than to be at her high school graduation, wedding and around for the first great grandchild. They need me to stay strong and fight, fight, fight. Which is exactly what I intend to do. For them as well as for myself.

So as this story goes, I will continue to have hope and faith that the good Lord will take care of me. But, in the mean time although I have faith, I can't stop thinking there is a reason for all this happening. I say my goal in life was to always put a smile on someone's face if even for a short second, this does not change. I will still always try to see the beauty of the rose and not its thorns. What is it that I'm supposed to do? All I can come up with is continue to make people smile through my strengh and to ask the medical profession to work on ultrasounds for women before it is too late. I'm not sure yet, nor will I possibly ever know, what my purpose here on earth is but I hope I've started by telling my story to you.

Please know, so far so good. Just finished with my second round of chemo. I'm doing well thus far and I make a cute little bald lady.

I took her to my doctor where they did an ultrasound and discover her uterus was 9mm in size which is twice the size of a normal uterus. She claimed it was uterine fibroids which she has known about for years. Unfortunately this was in January, the doctor told her he would not go any further until she switch her insurance and did not give her any further information or results.

It's presently June, I pressed my mother to go see a new doctor. Finally with continous off and on bleeding she went to another gyn who finally agreed they need to do a hysteroctomy with ovarian debulking her CA-125 are 145 and one mass in the uterus and one on her ovary. Not to mention she has a hernia that she had fix 5 years ago.

Reading everyone's story has help me cope with a lot of built up fustrations. She is my best friend and thinking that she's in pain or life possibly without her, tears my heart out. I know I have to stay strong for her and I will try. All of your stories have helped me. I know this will be a battle and I am ready. My Faith will keep me strong.

Saturday, January 19, 2008

A poem, even though people that write poems seem to bore me. :)

Sympathize

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!

During the break her numbers rose again and they chose to use Topotecan to knock the cancer out. Topotecan was not the answer, it made her deathly sick. After two rounds her numbers where steadily rising. My mother continued to have signs and symptoms of a bowel blockage. We would take her to the emergency room where they would tell her the x-ray showed a small bowel obstruction. They would admit her then the regular doctors would come and to say the bowel obstruction was open. This went on for months. Finally in November of 2008, her surgical team and oncologist tell her that her treatments were no longer working and that she had only a short while to live. We didn't take that very well, we were not ready for that. She went home hospice came out and went through all the details of this and that. Anyways, she was still in the fighting frame of mind. Daily she was praying for the answer to her problem.

As she was watching television she had seen a commercial for the Cancer Treatment Centers of America. We called and had all of her records sent to them. December she was set to fly out to see them. My mother and father are both sixty four years old had never been on a plane in their entire lives. I flew with them to Illinois. We saw an ovarian cancer specialist who was an ovarian cancer survivor herself. The hospital was so different from anything we had hoped for. It’s so far advanced in all technologies and treatments. It’s a whole mind, body, and soul treatment. I am so grateful, she decided to go. The doctor informed her that she did in fact have advanced cancer but that they were going to have to put a nephrostomy tube into her kidneys to drain them so that later they could but in a stint. This was performed along with the implantation of a port. She was put on tpn for nutritional supplementation. Things were looking up and she was actually doing a lot better by the time we had returned home. She only got the chance to receive the stint and removal of the tube and one more round of chemo before they found her in our hometown that she had a staph infection from improper cleaning of the port before administration of meds in the local ER. She was put in to the hospital and treated for the infection and blood clots that had formed around her heart as a result from the infection. She would have to wait for six weeks or more before she could do chemo again. Before the infection was completely gone she started throwing up all the time and it was fecal matter. She was admitted into the local hospital again and received a peg tube for decompression. Shortly after the peg was placed she was released to take chemo again. She had one round of carbo and we will return April 23 for more treatments. I hope all of this turns out well. I have full confidence that if anyone can make it she can. My mother is the fighter I hope to one day be. She never gives up and never backs down. Doctors here locally have told her to give up but she continues to strive on and prove them all wrong. It’s not all uphill and it’s not always easy to watch but she's surviving.

I would recommend the cancer treatment centers to anyone. At the very least, research and find a cancer specialist in your area who you can trust. It’s a sad world that we live in that doctors will take your money and allow you to die while they do so. Some things doctors can't fix other things they can. I have left a lot of what we have been through with her oncologist out of the story. It’s been bad, no one should have to go through what she did with a doctor but I feel that telling that right now is inappropriate because God is seeing to her needs anyway. That’s a blessing that I thank Him for continually. However, the cancer treatment centers are a very good place to be if you have cancer. We have learned so much from them in just short amount of time and I am overly thrilled with their kindness and determination to cure cancer for everyone. One last plea, let’s get the word out there about ovarian cancer. There are woman who suffer this diagnoses somewhere every day. We need to push trials and clinical and research for detection and doctors have got to take the symptoms that woman have more seriously. It could ultimately save someone’s life. I am glad that all the breast cancer research has gone so well and that so much is being done to advance detection and treatment but we need to be able to say the same for OVCA. Remember we are the fingers that bind together to form that fist that will begin to beat cancer. Donate, advocate, and most importantly share what you know with woman in your life. Information is knowledge and knowledge is power. OVCA may whisper but we can still hear it...fight!

Click here for Part One

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.

On February 7th, I was diagnosed with stage 2b grade 3 ovarian cancer. No abdominal fluid got to my omentum liver or lungs. I was very lucky. I underwent six rounds of chemo, which was four months ago, and my ca-125 is holding at a 9 and I am doing fine. I don’t have to go back to my doctor for another four months. The doctor did say that I will either get it again or not; so some days I live on egg shells. I do carry the brac1 gene so I will have a double mastectomy in two years to prevent breast cancer. I’ve been married for almost 20 years and have 3 children, Nick 18, Andy 14, and Carissa 9. I will also have a granddaughter in about two weeks.

This is an update to my original posting on 3/12/08 related to my sister's diagnosis and treatment.

I am happy to report that she completed chemo in June and had surgery last week to reverse her colostomy and check for further cancer. They did a wash of her abdomen and checked the fluid and also took some lymph nodes and tested those and everything came back negative so they consider her in remission. The colostomy reversal also went fine and for the first time in nine months she feels great and has no scheduled surgeries or treatments in the near future.

We are of course hoping for the best.

Best of luck to all of you.

Click here for Part One

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

It was 1998 I was three years old I don't remember much all I really remember was everyone saying "6 months". She was my mom the only one I had. While most kids dreams were to be a vet or teacher she wanted to be a mom. So she had me, just me. Everything about our lives seemed to be prefect I believed in fairy tales then. That was before my life turned around the doctors soon were becoming my family. I was living with my grandma and my Mom was dying. No one told me.

6 Months

That’s what everyone said. I found that out when I was 11. But now at 13 I know. She lived she said she just wanted to see me go to school and…

She did

She wasn't getting worse but better well as much as she could. Over the next 6 years of my life we did EVERYTHING! Camping we even went to disney world she was sick but living me my mom and my dad living together even though she was sick we made the best.

Every time

My mom spent LOSTS of time in the hosptial and I made friends with the nurses and doctors. My mom brightened the room she was the strongest person on earth Every time she went into the hospital I would go into the waiting room and pry, pry that god would make her better and we would be happy again.

The right thing seems wrong

Everything was going down hill after 2004 mom could no longer walk or eat on her own. We both cried a lot my dad would stay up until 4 am cause that’s when she felt good. But then one night it was really bad we took her to the hospital and she could barly talk. I went into the waiting room and I pryed to god not to make her better but to do the right thing.

It was Over

She died the next moring I was 11 she was supposed to live 6 months my mom made it 8 years! I am now 13 and living with my dad we both have some really though times but we both no we have the strongest angle watching over us everyday and sometimes we have to do the right thing

Dedicated to my mom Deb 1966-2005 I love you Mommy

After returning from Forida at the end of April, I went to my Pcp for a laxative since I had returned bloated and constipated. He gave me a prescription and I tried it for three days. Then I knew there was a more serious problem.

I went back to the doctor and he did a CA 125 test. It was 19,000. My doctor said that one a scale of 1-10, I was a 12.....way off the charts. I had a CT scan and they sent me to remove 5-6 liters of fluid and biopsied the fluid.(At least I took off 12 lbs. Ha!)

Next I was sent to a hematologist/oncologist. He told me I would need chemo, surgery, and more chemo. I chose a gyn/onc/surgeron and went to see him. He agreed with the first doctor. I underwent 4 carbo/taxol treatments, then had a complete hysterectomy removing everything I did not need to live. My hema/onc followed that with 5 more carbo/taxol treatments.

In February of 2008, my CA 125 was 10. We were all elated and I was put on a schedule of seeing one doctor, then I would see the other doctor, then I would skip a month,etc. Anyway, in June the 10 had jumped to 40. This brought a little alarm but was not earthshattering. Unfornately, August first it had jumped to 92 and I was beginning to feel some symptoms.

Therefore my doctors talked and decided it was time for more carbo/taxol (luckily it had been 8 months since my last chemo so they could use it again). For some reason my body seemed to respond to it really well last year. They plan on 3 treatments. If these do not work, they will move on to some of the many other available drugs.

I had my first treatment yesterday, Aug. 15, 2008. I am beginning to feel a little under the weather but do not expect the worst for another 24-48 hours if I respond like I did before.

In April of 2007 we took a trip to Disney World. During that trip I started feeling out of sorts but put it off to all the eating out and acting like a kid at Disney World. After returning from Florida at the end of April, I went to my pcp for a laxative since I had returned bloated and constipated. He gave me a prescription and I tried it for three days. Again I felt like it was all caused by too much fun. Then I knew there was a more serious problem when he sent me to a hospital in San Angelo, TX, where I was diagnosed with advanced stage 4 ovca.

My tumor was the size of a baseball, and my CA 125 was 19,000. My doctor said that on a scale of 1-10, I was a 12.....way off the charts. I was very bloated, had to have 5-6 Liters of fluid removed, and was having lots of nausea and tummy aches (at least I took off 12 lbs. Ha!). My onc/hema did 4 carbo/taxol treatments, then my gyn/onc surgeon did a complete hysterectomy and removed all the other parts I did not need to live. No lymph nodes were a problem. Then my onc/hemo did another 5 carbo/taxol treatments…the last being 12/24/07.

In February, 2008, my CA 125 was at 10. We were all elated and I was put on a schedule of seeing one doctor, then I would see the other doctor, then I would skip a month, etc. Anyway, in June it had jumped to 40. This brought a little alarm but was not earth shattering. But now it is 92 and I am beginning to feel some symptoms. Because it had jumped twice, I had another test yesterday, 8/15. I am also feeling bloated and having tummy aches again. Monday, my gyn/onc will do a pelvis exam to see if he can feel anything suspicious. I am feeling a little under the weather but do not expect the worst for another 24-48 hours if I respond like I did before. It is possible that the CA number will be the same or lower, but my onc and I feel that we need to be prepared. Mentally, I am ready for whatever the call turns out to be. I have been blessed with a very supportive husband and daughter. And I know God will take care of me.

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.

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.

I had been having irregular periods and felt that my belly was too large. I had always been kind of flabby in that area and thought it was just menopause starting and weight issues.

I was not good at seeing doctors routinely and just put it all out of my mind. I worked as a medical assistant for 30 years before moving to Florida and was always better at giving care than receiving it.

In the beginning of 2006 I stated having stomach discomfort and difficulty breathing on exertion. It finally got bad enough that I could no longer ignore or rationalize it away. I went to the doctor and he ordered a CT scan which showed a very large pelvic mass and fluid in the abdomen. I had the fluid removed so I could breathe. They removed 15 litres!!

I was referred to a GYN oncologist and had surgery the following week. I was very lucky. My tumor was a borderline cancer and required no additional treatment other than CA125 every 6 months to make sure nothing was recurring. I was out of my mind with fear and if it weren't for my husband, friends and good medical care I would not have made it through.

My advise to all women is to listen to your body! If your stomach is getting big for no apparent reason don't ignore it. Facing the facts is so much better than living with fear of the unknown. I thank God everyday that I was spared the worst

I had my surgery. My right ovary had a tennis ball size cyst on it. My left was also cystic so my doctor removed them both. She didn't suspect a thing. One week later I went to have my staples removed, and she told me my pathology report had just come back. It stated I had right ovarian cancer. They had staged me at 1a. It had not spread to the outside of the ovary yet. She said it was caught early. She ordered a Ca125 and a CEA. Both came back within normal limits.

One month later I went to see a oncologist-gyn. He sent me for a lung, abdomen, and pelvic CT scan. He also had me repeat lab work including a CA125 and a CEA. The CA125 had dropped from 15.6 to 6.5. My CEA was 1.5.

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.

About five years ago after a questionable pap smear her OB/GYN did a modified hysterectomy vaginally and although he got most of her uterus he said he could not get to her ovaries, they were hidden. Had she had a full surgical hysterectomy maybe this could have been avoided.

Click here for Part Two

My mother had not been to a doctor since I was born twenty-four years before this. She had not had a pap-smear in ages or even a physical. Overall her health was always great. Never one to just sit and do nothing, even at 63 she was probably in most aspects, in better shape than myself.

So this news was completely out of left field. My mother had been having adominal pain for sometime, along with the fact that it was difficult for her to sleep and eat. For sometime she threw these symptoms to the back of her mind and would tell us she would get better, that it was just a virus. After her stomach had swollen to the size of a woman who could have easily been eight months pregnant she went to a local family doctor. The doctor ordered a ct scan and sent her home to wait. Although he had done bloodwork, he had made no mention of cancer or abnormalities. On returning for the ct results she was told she had a mass about the size of a grapefruit on her left ovary. I'll mention now that he was still not noting any abnormalities in her blood nor did he mention the fact that she had a lot of fluid in her abdomen. They made her an appoinment with an ob and a general surgeon to remove the mass. At this time they were still telling her the mass could be benign. When my mother finally got an appointment with the ob it was around January, at this time she was told she did have ovarian cancer and that they planned to do a complete hysterectomy and they would be removing the fluid that had collected in her abdomen. I'll mention now that my mother was told that she had advance cancer that had spread beyond the ovaries. Why she or how it came to be that she never shared that with us I still don't understand. But at any rate we were never told. My four brothers, father and myself were still under the impression that it was still contained to the one ovary and that during surgery it would be removed and all would be downhill from there.

She was scheduled for surgery the morning of Febuary 7, 2007. The surgery was supposed to only last four hours. We were all there awaiting to hear from her doctors in four hours that all was well and she was on the road to recovery. As the nurse called out our last name my father and I headed for the discussion area to speak with her ob. We sat in that room in dead silence for what seemed like forever before he walked in. I knew immediately things weren't as we had hoped. His face told the story of a man who was about to give us the worse news ever. He said that he hated to inform us that the cancer was literally everywhere. That if we could imagine someone turning over a box of oatmeal inside of her then we might get a clearer picture of what he had seen.

The cancer was a level 3c and that they had given her a colostophy bag cause of two small tumors on her colon that they were trying to avoid anything irritating. At this point I was spouting out every question that came to mind and Dr. Dean was very considerate and tried his best to answer every question to the best and fullest of his ability. They were going to give her a mediport under her rib cage that would shoot the chemo directly onto the tumors.

So back to the waiting room we went to tell our family members who were anxiously awaiting our news. Their reaction was much the same as ours; we were all devastated. As we sat there wondering why this had happened and what we were going to tell her thousands of things ran through our minds. We had come to the conclusion that we would avoid telling her the full details in hopes that if we only highlighted the positive she would keep in high spirits and fight this battle harder. Little did we know that she already knew and had chosen to deal with it on her own in hopes of not worrying us. I know that my mother had hidden the details from me cause I was pregnant and already having a hard time with premature labor and the babies' heart rate. I was due to deliver on March 3, but the plan had to be changed cause he was tachycardiac, I would be delivering February 22. I was so worried that she would not be there for this birth. As selfish and childish that I know that is, she had been there for every major event in my life and I would so miss her not being by my side to welcome this blessing. I knew her health was more important and her just being there to see him grow up was more important though so I pushed all that to the side and focused all my attention on her.

Three more hours passed as we awaited news from the general surgeons who would be preforming the colostophy surgery and the internal flushing of the fluid. Our names were called again and this time I chose to wait where I was at and allow my older brother to take my place. They returned after about fourty minutes with huge smiles. I already felt the wait of that bear easing off my back. They reported that Dr. Mckimmie and Dr. Brock had removed all the fluid and most of the cancer that was left. They had high hopes for her prognosis and I was thrilled to hear them say that.

It was a while longer before they allowed us to go in and see her in her room. When we walked in I remember just wanting to crawl into the bed next to her and hold her like she had done so many times for me when I was sick. That wasn't even possible had I actually tried. My mother was hooked to a morphine pump, there was a tube down her throat to suction all the vile out and so many needles and bags of this and that; only the doctors would be able to tell you what it all was. It was at this point that I was just baffled and grieve stricken. I wanted to help but didn't know what in the world I could for her.

By the next morning she was sitting up talking with us the best she could. She sat in a chair next to her bed and I gave her a bath. The next morning she was asking when she could walk and when she could eat. She is a fighter and was determined to go home. My mother spent less than a week in the hospital. At home she was doing great. I volunteered to take care of her in anyway she needed. Along with each and every family member we have. My sister-in-laws cooked and cleaned for her. We all bought things that we thought would make her more comfortable. I suppose the hardest part was taking care of the bag. She was unable to change it by herself at first and I tell you with a honest heart it didn't bother me to do it one bit. It was the least I could do. I wasn't great at it at first but we got the hang of it, with the help of an angel named Charlene who had taken care of her father who had colon cancer when he had his.

On Febuary 21st my mother was scheduled to see Dr.Dillmon, her oncologist, to discuss her chemo options and starting date. I was in the hospital in labor with my son, my husband left and met her, my father, and brothers at the oncologist office. Soon after that the babies heart rate dropped and I was rushed to an emergency c-section. My son was born healthy and in the presence of my wonderful mother who had made it after all. I have two other children but I tell you now that his birth was a precious moment for more reasons than one. My mother calls him her heart, I often time see her just staring at him and I know what she is thinking cause so many times I thought the same thing. We three share that bond and nothing that has or may happen will ever take that from us. Soon my mother started chemo and the treaments were literally trying to kill her. The mediport done just what they said it would do it sent the chemo straight to her tumors were it collected in her stomach and made her deathly ill for weeks. She was hospitalized for days after her second round and at this point she was ready to call it off and give up. Her oncologist decided to go another route and infuse her intravenously. This plan of action worked out well for her. The ca 125 level had come down from the 1200 range to around 140.

After all the rounds were done, her ca 125 level was down to 45. She had the bag taken off and the mediport taken out. While having the bag taken off and getting her colon put back together they discoverd that the cancer wasn't completly gone as they had hoped there was some residual and more chemo would be needed. Right now she has four rounds of chemo in again, she will be finshed in the spring. Today she found out her tumor count is down from 73 to 64, she had a ct scan and still some residual is there but other than that she is in perfect shape and on the road to remission. Its been a long hard battle but not nearly as bad as some people must suffer. We continue to pray that all will be done and over with this one day. As my mother would tell you herself all of this wasn't for nothing; we have met some very sick people along this journey and have been afforded the opportunity to pray for them that not only God heal them if He so chooses, but that He will enter their hearts and lives. That's my mother and so many members of my family's greatest joy, to share with others about Jesus and what he can and has done. I will be praying for all of you and your families. God is still into miracles and he can and will do one for us. I hope to write to you on here one day that my mother is cancer free, but if that day never comes I still know this; God has His loving arms around her and no matter the outcome He was there all the time.

Click here for Part Two

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!

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.

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.

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.

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.

Unfortunately, the prognosis is not good. The cancer is stage 4 and has metastasized throughout her abdomen and into her chest. According to the doctor, it appears that the tumors have been growing undetected for roughly three years. How did this happen? How can you detect something when you don't even know you should be looking for it? The only explanation the doctor can give is that a few ovarian cells must have split off prior to or during the hysterectomy. What are the odds? How do you check for cancer in an organ that you aren't supposed to have?

She survived the surgery like a real trooper. Afterall, she raised six kids and multiple grandchildren, so she refused to allow surgery to get her down. My grandma seemed to be doing well, so the decision was made to get her out of bed. Bad idea. Since she had had intestinal surgery, the doctors decided not to give her any anticoagulants. Well within minutes of getting her out of bed, multiple blood clots released and travelled to her lungs. This was her ticket to ICU where she spent nearly a week. My grandmother is still in the hospital today.

She still has to make the decision whether or not to take chemotherapy. Without it, she doesn't have much time. With it she might have more time. Yet, I wonder, what kind of quality of life will she have with the chemo and it's side effects? With her age and her terminal diagnosis what is best for her?

I am a nurse in Tennessee, and I know that we are all facing a long, devastating road ahead. Even though I am in the medical field, I feel that her case is out of the doctor's hands. It's too far gone. I feel that our only hope is to put it in God's hands and pray for her to have peace, no matter what.. if any treatment she chooses.

I guess the point of me sharing this story is to let women know that just because you don't have an ovary doesn't mean that you can't have ovarian cancer. I recommend all women to be screened for this devastating cancer. For anyone facing this disease, whether you are the patient or someone close to the patient. I offer you my prayers and best wishes!

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 have been in "partial remission" since August, '06. I say partial because my CA-125 has been steadily climbing up from 12 after chemo, to 43 at last doctor appt. Each CT shows "slight increases in areas of suspicion". I have never heard the report of NED.

I don't want to wait for the CA-125 to get high enough to alarm my doctors and stimulate them into finally deciding to do something! I told them I needed to be doing something proactive! I needed to being doing something right now! I have been told I can start taking Tamoxifen.

This drug is now starting to be used for OVCA/PPC. I must say, the side affects and serious risks listed on the drug sheet is scary! I would love to hear from anyone who has used Tamoxifen or has been advised to use it. Please, I need some help and some hope!

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

By December of 2004, the fatigue was so intense I actually remember arriving at work one morning (I have taught elementary school for 32 years) and sitting in my car crying because I just didn’t think I could make the walk up to the second floor to my classroom. Again I went to my doctor and she thought I must be having anxiety or stress and suggested an anti-depressant and to rest up over Christmas vacation. Finally, I was so sick and tired of being sick and tired, my husband took me to the emergency room.

There, after many tests, they found that my blood levels were so low from the loss of blood that I was so anemic that it had actually affected the amount of blood available for my heart to pump. I received blood transfusions, and was sent home with iron and told again to rest. Every type of test was scheduled to determine what had caused this low blood level. Colonoscopy, endoscope, you name it, I had it (with the notable exception of a CA125, transvaginal ultrasound or CAT scan.)

At every appointment with every type of specialist, I went through the symptoms I’d been experiencing, and repeatedly suggested a hysterectomy, since I clearly had no intention of having more children. Every test showed nothing out of the ordinary. My PCP sent me to yet one more gynecologist. After really listening to my story, he asked me if I’d ever considered having a hysterectomy, since I’d had so many ongoing problems. I was so glad-I wanted to kiss him!

I was thrilled to finally have an end to the vague problems I'd been going through. Pelvic exam and a transvaginal ultrasound prior to surgery showed all would be routine. I entered the hospital at 7:30 am on May 23 and woke up in a dark room at about 8:00 pm. The doctor came in and told me I had stage IIIA ovarian cancer. I was stunned-I'd never heard of ovarian cancer, except I vaguely remembered Gilda Radner had died from it. I looked at the doctor and just said "Cancer, cancer"? He nodded. I replied, "Like lose your hair and die cancer"? He nodded again.

That night was my initiation into the club no woman ever wants to belong to. I began a journey down a path that still continues. After my surgery I went home to face my new life in “cancerworld”. But there were more surprises in store for me.

During my last few days in the hospital, I’d had my first experience with terrific heartburn. The nurses assured me it was probably as a result of the pain medications I was receiving. They tried Nexium; it gave me a rash and itching. So I went home Friday, and promptly had my husband running to the store for Tums or anything that would help. Nothing did. Saturday, I sent him back with specific instructions to ask the pharmacist what was the strongest over the counter medicine for heartburn. She remembered my “heart incident” from the anemia and called me at home to make sure my heartburn couldn’t be a heart attack. I thanked her, explained everything that had happened in the previous week, and assured her it was just heartburn. She sent Aaron home with more over the counter remedies.

By Monday (Memorial Day) the pain was so severe, I knew it wasn’t heartburn. My son and husband rushed me to the emergency room once again. It was a heart attack! Tuesday I had an angiogram and Wednesday had cardiac catheterization to install 3 stents in my heart due to blocked arteries. Five days later, home again to heal and prepare for chemo!

I initially completed 6 rounds of chemo with a carboplatin/taxol cocktail every three weeks. I then opted to do 12 monthly maintenance chemo doses of taxol only. I have lost all my hair, eyebrows and eyelashes, dealt with nausea and incredible fatigue, but consider myself one or the luckier women I've met. I have been able to continue to teach and have found wonderful support and love from my family, friends, coworkers and "my kids." I have learned to appreciate the grace and joy of the simple things in life, and really to believe the adage" don't sweat the small stuff" and finally realized it really is mostly all small stuff.

The awareness movement that has brought so much information and knowledge to the world about breast cancer now needs to be brought to bear to share with the world about OVCA. The symptoms are vague and common (bloating, fatigue etc.) which is why it often diagnosed too late to be cured. As one doctor told me "if all women knew the symptoms my waiting room would be filled with middle aged women". The motto of the National Ovarian Cancer Coalition on our teal jelly bracelets is "it whispers, so listen. Women need to listen and speak up about our bodies! Then let's hope waiting rooms would be filled and lives would be saved earlier. Our lives, the lives of my "sisters" fighting this disease daily and the lives of our undiagnosed sisters and daughters depend on this.

Nancy Tufts
Portland, Maine

Unfortunately, for about a two week period in March 2007 she had stomach pains, the constant feeling of having to go to the bathroom and backaches that just wouldn't go away so she went to the doctor. Her normal doctor told her that she needed to make an appointment with her OBGYN right away- this scared my mother. She went to that appointment and a scan showed that her ovaries had two massive cysts on them- one 6 inches in diameter, the other 5- the size of 2 melons. The OBGYN even said that she was pretty sure they weren't cancerous. She even stated "If cysts that large were cancerous, you probably wouldn't be here today." This put my mom at ease. She was then scheduled for a common hysterectomy which she was nervous about, but I assured her she would be fine- 1 out of 3 women over 50 have a hysterectomy. The day after her surgery the doctor entered the room and asked to speak with my parents- my brother and I knew immediately it wasn't good news. They found cancer and by the way they said it- there seemed to be a lot of it. They told us to expect it to be diagnosed at a late stage (III or IV). We were devastated. We were also upset because there was no ONC on call when she had the surgery because they were "90% sure it wasn't cancer." Her OBGYN tried her best to remove anything that she thought might look like cancer, but that is not her area of expertise- so we thought she was bound to miss some.

So she recovered from the surgery and we went to a renown specialist who scanned her and saw another possible cyst that they might've missed and a fatty liver- which sounded as though it could be very life threatening. "Great, more surgery" my mother said. 3 weeks later they operated on my mother again. The doctor came out and my oldest brother asked "So Doc, what stage are we thinking?" hoping for a Stage II or Early Stage III. He said "Honestly, the lymph nodes tested negative for cancer and we found no cancer in the fluid. You mom seems to be a STAGE IC." Tears of joy started pouring down our faces. Her odds from a stage III or IV to stage IC have increased significantly. The cyst he saw ended up being scar tissue and her fatty liver was just that, fatty, but not cancerous! She is now on her 3rd treatment of chemo (doctor said it is only being given to her as a preventative) of 6 and is taking it like a champ. She has gone out and about almost every day of her treatment minus 3 or 4 due to her body aching. She is so positive and knows that she has a long life ahead of her. Me, my father, and my two brothers are behind her all the way. She plans on going back to school this coming January and being the students' favorite teacher once again. She said the hardest part about the whole process is not being with her students and not being able to take care of her family. For those with cancer, there comes a time where you may need to be cared for- let your family help. Take it easy, and stay positive! No matter what the percentage of beating that stage of cancer is, there is always someone who wins when the odds are against them. God bless.

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.

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.

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.

“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.

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.

It was Christmas day, and Ii was enjoying the holiday with my family when I started to get strange stomachaches and pains and it got to a point where I found it hard to move. New Year's came and the pain had grown and so had my belly. My friends had made a joke and would ask me when I was expecting and as funny as it was I knew deep inside something was not right. I asked my mother to go to the doctor and I went and she felt my belly and told me I was severely constipated and I needed was some laxatives and I would be good to go. I felt a sense of relief when she told me because I had been getting a feeling it would turn into more than that. After I had taken my laxatives, I expected to feel better, but that wasn't the case. New Year's came and went and I spent most of it on the couch in a pain I couldn't explain as my stomach continued to grow. I asked my brother to take me to the emergency room the day my parents had gone on vacation. It was January 5, 2007 when my brother and I went to the emergency room and I spent about 12 to 14 hours there with my brother, my cousin Rose and her husband. When they told me I had to be transferred from Somerset Medical Center to Robert Wood Johnson University Hospital, something in my mind clicked and I knew I wasn't okay.

The doctors were not allowed to tell me anything because my parents had not returned from vacation. They had gotten there and spent 12 hours there and ended up having to come back when they received the call that I was in the emergency room. When they came back, the next day, January 6th, I was told the reason I had been feeling so much pain and growth in the abdominal area was the result of stage III ovarian cancer and as the doctor said it herself, it was like she couldn't believe she was saying it either. She had seen my CAT scans and she sees ovarian cancer everyday so she didn't think anything of it until she looked at my birthday and said the two couldnt coincide because I was too young.

I am the youngest patient known to have stage III ovarian cancer. After I found out, they had planned surgery for me. On January 12th, I went under the knife. They removed both my fallopian tubes and my ovaries. The recovery was painful and hard but I underwent it with the strength and support of my family & hospital staff. My first chemotherapy treatment began on January 20th, and I was released from the hospital the next day. I had spent almost an entire month surrounded by disease and weakness and was finally able to get up and breathe in fresh air; but that didn't last too long. I spent most of Feburary in and out of the hospital because of my blood cell count until finally in mid March I was stabilized and okay and home for good.

Since January I have undergone six sessions of chemotherapy, every three weeks. My CA125 is checked every two weeks. When I was first diagnosed with cancer my CA125 was over 900. With surgery alone it went down to around the 230's. After two treatments, it was around 220's and it didn't budge, so my doctor decided to up my chemo meds to see if the numbers would change, and they did. My CA125 went from 230's to THIRTY FOUR. I was thrilled, excited, and for the first time in four months I felt alive. The last visit to the doctor my CA125 had went down again, now to 22. Every time my CA goes down it ups my confidence to fight this terrible silent killer and the boost I need to carry on each day.

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.

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.

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.

I had been having a twinging pain in my right side for nearly 18 months. My father died of kidney cancer 7 years ago....so I had been asking my general practioner "could it be related to my kidney?" I also had high blood pressure as well, even though I was a healthy, young person. After switching doctors, the new Dr ordered a CT scan of my abdomen/kidney. June 2006, Kidney was clear, they noted a 3cm cyst on my right ovary "insignificant" on the CT scan.

Summer 2006, I experienced symptoms of gastrointestinal stuff throughout the summer. Still the twinging side pain...just an annoyance more than anything.

November 2006....I started noticing my belly getting rather large, and a full-bloated feeling...it was firm. I looked like I was pregnant. I also developed back pain...just more of an ache....and I always woke up with my whole back slightly aching...like it was my old mattress or something. I also was constantly dealing with indigestion/acid reflux.

Mid-November 2006....I experience three days of rather excruciating abdominal pain...it was rebound pain, like I had felt before, when I had my appendix out a few years ago. I finally, after 3 days of this, went to the ER. They did not order any tests, told me it was probably constipation (because I had not gone during the three days), or possibly a ruptured cyst. They sent me home with a laxative and pain relievers. I did feel better after a few days.

I started researching the internet for my symptoms. I came across all these stories, and other links, which all seemed to link these symptoms to ovarian cancer. I was feeling scared, and did not want to pursue it. I finally thought, well, I'll just get my "annual" pap exam out of the way a little early, and make sure I'm okay.

Mid-November 2006....I have my OB/GYN physical. She does palpate a mass on the right side. Sends me for a transvaginal U/S. Confirms it is a 6cm complex mass on the right ovary. They note the same 3cm that was on the CT scan in June. They decide to wait another cycle and recheck it. December 2006....it is unchanged and solid/complex. I am sent for a CA125, it comes back 48 (normal range is 0-20).

December 29, 2006...I am referred to a GYN/ONC for surgery. The surgery is scheduled for a week later. Everything is moving so fast...it is the scariest thing to be waiting for the actual surgery to be over, and so much anxiety about cancer.

January 8, 2007....Surgery removes a 6cm solid "endometrioma" which had adhered to the right abdominal wall, and spine, and performs an oopherectomy for a dead-tissue ovary. Pathology while in surgery, comes back.....Not Cancer! I was praising God, as I know from reading over and over....it is not always this outcome with these symptoms.

The November visit to the ER was because the tumor had twisted on my fallopian tube and cut-off blood supply to my ovary. The appearance was solid, because of the blood/dead tissue inside from necrosis setting in.

I just want to say to others that are reading here....there are little signs our bodies are telling us that something is not right. Don't feel like a hypochondriac, and get them checked out! That dead/infected tissue could have become cancer, later down the road. It is better to have things checked out, if you think it could be something. Don't wait. Your outcome may even be positive! And I feel so much better, now...no more back pain, no bloated stomach, etc.

To those of you who are dealing with this disease....I am so proud of you for sharing your stories, and for being strong to fight this, and hope and pray that technology will hopefully, one day soon, bring a cure and better measures for early detection. God Bless you all, and don't ever give up.

I really had to get used to the new normal life after cancer. I've done many chemo trials. So don't be afraid of that. I have no secret weapon. Just keep the faith, have a positive attitude, and make sure you feel comfortable with your healthcare team.

I feel knowledge is power against this beast. So I try to find everything and anything out about ovca and its course of tx. Be part of your healthcare team. I've learned from support groups, ACOR list on-line, CONVERSATIONS, GCF, and OCNA. Have gained many valuable friendship thru these also.

On May 28, 2006, I graduated from high school. My family was so proud. A couple of months after that I started noticing changes with my body, bloated abdomen, menstrual changes, upset stomachs, etc.. August 4th, I went to a gyn and they sent me to do an ultrasound which showed a large mass in my whole abdomen. September 12th, the mass was removed. It was apprx. 24cm x 20cm x 10cm. They gave my family the news right after surgery that the tumor was malignant. However, there was another mass that they were unable to get due to the location and that we would need to begin chemo after healing from the surgery, to shrink the mass. In the meantime, we waited for me to heal and for the pathology report. Ten days after my surgery I seem to be doing worse, I couldn't sleep, the agony was horrible, so I went back to the doctor. Another ct scan showed the mass still in my abdomen was causing complications. The pain was unbearable. The doctors scheduled a procedure to help for the following week. But at the beginning of the week I had an appointment with the oncologist. When he saw the amount of pain I was in, I was admitted. That same day, the pathology report was read to us, verifying the cancer. I cared and I was so scared, but the amount of pain I was in was over-riding those fears. So 2 weeks after my first surgery, I was admitted to the hospital.

I learned alot about this cancer, how silent , aggressive and deadly it is. I knew I was too young to have it. I knew my chances were not very high even though my family or the doctor never came out and said it to me.

A couple more surgeries over the next couple of weeks, didn't help. The cancer had just spread too far, too fast. I, Sande Dawn Jordan, on October 11th, 2006, lost my battle with Epithelial Ovarian Cancer. By that time I was happy. Happy because I lived the life I had, and I was at peace, because I knew Jesus and others were waiting for me.

Remember my name and my story, not as a story to bring spirits down and cause less hope for those of you still living through the same thing, but remember me for yourselves and everyone else, stressing the importance of getting the message across on this cancer. To help in the research for earlier detection, or even better a cure. Most importantly, placing awareness out there so women can be informed on this cancer, symptoms, detections, and hopefully one day prevention.

My mom would tell me occasionally that I should to go to the doctor because I would have pains in my stomach and I wasn't looking very well, so finally in Nov 2005, I made an appointment with my doctor. I was scheduled to see her on Monday, but when I got home from church on Sunday night, my left foot was so swollen. I propped it up and it got better. When I went to see the doctor on Monday, it was supposedly for a bladder infection, but I did mention that I had a knot on my side. She felt it and have advised that I should get a sonogram. I could tell she got very nervous. Anyway, I've made the appointment for the sonogram the next day. I asked her then if she thought it was cancer and she said it was. She was worried and I became very nervous. I went to pray that night at a prayer service at church.

Bilateral echogenic masses on the ultrasound sent me strolling (still not worried) to the OB/GYN's office. He thought it was probably endometriosis and suggested waiting a few months and watching it. I've never one to stand up to doctors (except the ones I work with...I'm a nurse), but a little voice told me "waiting and watching" just wasn't good enough. Since I wanted to try to get pregnant after the marathon in March, I asked that he do an exploratory laparoscopy to get a definitive diagnosis.

The GYN came out of the OR the morning of my laparoscopy and told my husband that I had dermoid cysts (nasty little bunches of rampant hair, nails, cells) but they were too big to be removed laparascopically. He biopsied the one on my right ovary and sent it off to the pathologist.

The next day, two days before Thanksgiving, I got a call from my GYN's partner (he was out of town for the holiday). All I remember from that day was writing out the words "serous papillary carcinoma" as we were on the phone, and knowing my life was about to completely change.

I was staged a 2c, and will always be grateful to my internist for the fact that it was diagnosed as early as it was. The next 6 months were a blur of surgery, chemo, tears, laughter, not having to shave or buy hair products, and finding a newfound peace and acceptance with my life and the world around me. I've been in remission for 3 years, and I have days when I don't think about cancer at all...not even once.

In mid-March her oncologist told her that nothing more could be done and she went into hospice care. At that point, it had been ten and a half months since her diagnosis. After beginning hospice care, her pain was controlled for the first time in several months although she continued to vomit and lose weight. My tall, athletic, beautiful mother lost more weight than I would have thought possible and she never regained the ability to eat normal meals. We lost her on May 27, 2006, but she left a legacy of a life well lived with a loving husband of over 32 years, two grown children who adored her, and numerous family members and friends who loved her dearly and will miss her immensely.

We will never understand why such a wonderful woman had to experience something so difficult and tragic, but we will hold our memories close and continue to speak out against such a horrible disease. Cancer, regardless of the type, is a family disease since the entire family is affected in such a devastating way.

Kathleen McGee, September 10, 1955-May 27, 2006.

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,

After Easter dinner, I became violently ill and ended up in bed for almost an entire week hardly eating and in extreme abdominal pain. After that week, life went back to normal. I was a senior in high school and I worked in a Nurse Aide training program in the mornings. After school I participated with the Track and Field program.

Months later, I noticed that I couldn’t eat dairy products like I used to. Being a huge cheese and ice cream fan, I looked into being lactose intolerant and I discovered that it can develop as a person ages. I bought some lactaid to support my eating habits and felt better. Around that time, I also noticed pain in my right thigh. Running track, it was easy to do some extra stretches and use a heating pad when the pain struck. Track season ended and soon I felt myself gaining weight- I thought, since my activity level had decreased. It was only in my stomach though, but I’m tall and I had always been skinny, so I honestly didn’t know where my body would gain additional weight. I graduated High School and started my first job. I continued to ignore the extra weight because it didn’t really bother me until somebody asked me if I was pregnant. At that point I felt extremely self-conscious of my appearance. One day, I sat down and felt around my stomach. I absolutely knew I couldn’t be pregnant and I couldn’t believe that I looked like I was in the eyes of my relatives and friends.

Feeling around my stomach, I could feel a definite line directly under my rib cage. I couldn’t push my stomach in and I could trace the outline of something inside of me; a large mass. Fear, anger, resentment, embarrassment, and confusion struck me all at once. I was now 19, working a horrible job with no insurance and I had no coverage from my parents. I continued to ignore it and just hoped it would go away. Because my weight was all in my stomach I started buying loose clothes and nobody noticed it any more. Slowly though, I started to feel worse. After some time, I could no longer walk or stand up straight. I was constantly hunched over in pain. Riding in a car was agony. To sleep, I had to lay on my side and stuff pillows under my stomach for support. The weight of the mass was creating too much pain to bear even when I laid down. Sitting on my bed one day, I made myself think of what could be happening to me. What about Ovarian Cancer? I didn’t know anything about it, nor did I know anyone who’d had it, but my body was telling me something.

The next morning, I woke up in a panic. I could hardly breathe! I called my mom at work and told her that she needed to take me to the Emergency Room; I was going to get dressed while I waited for her to pick me up. That entire day, I never caught my breath. After several tests, the ER doctor told me I had Ovarian Cancer and he had called a specialist in to come and meet with me about what to do. When tears started running down my face, he asked why I was crying. No reason, I said, just that I found out I’m 19 and dying!

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.

On April 27, 2005 my world as I knew it changed. I was told after having a CT Scan that I probably had either Primary Peritoneal Carcinoma or Ovarian cancer due to large amounts of fluid in the abdominal area. The diagnosis was to be confirmed by an elevated CA125 of 618 and upon seeing a gynelogical oncologist. On May 12th I had surgery and a hysterectomy, debulking and staging was done. Stage IIIc Grade 3 Primary Peritoneal Carcinoma, sometimes referred to as Extra-ovarian cancer. I was then given the Taxol and Carboplatin due to the fact that the doctor was unable to remove all of the cancer. After 5 treatments my CA125 was rising, which showed I was platinum resistant. On Sept. 1st I then took one treatment of Doxil and was unable to take the second treatment on schedule due to low white cell counts. I decided to take a break from the chemo due to the fact I was feeling great. On Nov 2nd I had them check my CA125 to see what was happening without chemo and my numbers had risen 91 points to 271. I was beginning to feel discomfort in the abdominal area so I wasn't surprised. The lowest my CA125 has been since surgery was 167.

On Nov 23rd I had my second treatment of Doxil. I really wanted to not take anymore, but pain has a way of helping you change directions. Before April 27 I thought my bloating, gas and pains were recent never before gallbladder problems. No one in my family had cancer and I thought I was extremely healthy. This is a fight and I am giving it my best through prayer, faith and hope.

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.

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

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.

In late November she started having trouble breathing, she didn't have medical insurance and avoided going to the doctor as long as she could. She was xrayed several times and sent to a pulmonologist for a diagnosis. They related everything to the stroke. As January approached her breathing had become more and more labored, she went back to the pulmonologist and back to her PCP. Still no diagnosis. She finally had enough and pushed her PCP into admitting her to the hospital. She was admitted on a Thursday. Ct on Friday and on Monday imagine our shock when they informed us that she was eaten up with ovarian cancer.

We have tried to recall the hidden symtoms, she had them: indigestion, pain in the abdomen, a feeling of fullness,bowel changes, but little did we know about this devasting disease. She died 2 weeks after she was diagnosed. They had given her 2 rounds of Chemo with the hope that it might slow things down. But it didn't. I thank God everyday for not letting her suffer and giving us the years he had. She was a Great Mom and an awesome Nan!

I would just like to tell you to listen carefully to what your body is telling you and don't take no for an answer. This can be fought and with the love of your family and the trust of God you can be a survivor.

Having cancer has changed my whole life. I've learned to speak out, to stand up for myself and most of all to enjoy each and every day. This gift of six years has allowed me to spend six years with a husband I adore, it's brought a grandson who is the light of my life, a new son-in-law, a new daughter-in-law and countless friends. I've learned new hobbies, taken up artistic endeavors I never would have considered before and I even signed a 30-year mortgage. How's that for optimism?

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.

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.

The first thing I remember after surgery is my husband telling me softly – “It’s ovarian.” I was devastated. The surgeon came by that afternoon and confirmed I had stage 2C ovarian cancer and said I would need at least 6 rounds of chemo - taxol/carboplatin and my hair would fall out. I cried the entire night. It was horrible.

However – here I am 4 months past my last chemo – with new short, curly hair and a CA-125 count back down to 2.8. I feel healthy, happy, and strong and I hug my kids a just little bit tighter these days.

It was a horrible ordeal and I pray it will not return – but in many ways going through chemo was not nearly as bad as I thought it was going to be.

For those of you just starting this journey, I want to offer words of encouragement. First and foremost let me tell you – have hope! There are survivors. Cancer is not an immediate death sentence.

Second – you may do OK on chemo. I was stunned to find that during my chemo, I was able to function fairly well. I took care of my kids, went out with friends, even traveled to visit family. I had my down days - but usually not more than 3 days per cycle. For me – the emotional toll was far worse than the physical toll.

Here are some of the things I did that I found helpful:

1. I found the right doctor. Don’t be afraid to switch doctors! My first oncologist was so gloomy – I was in tears for days unable to cope. I switched. The new doctor gave me hope. It COMPLETELY changed my mental state and enabled me to function through the ordeal. It was the best thing I did.

2. I leaned on friends. They brought me meals, took care of my kids, and just listened when I needed to cry. I couldn’t have done it alone – don’t try.

3. I signed up to participate in a triathlon! I know – it sounds wild. It was the best thing I have ever done! It was a fundraiser for ovarian cancer research. I started by just walking around the block. Gradually I built up my strength. I swam, biked and walked in a Sprint distance triathlon on September 12th and with a group of friends we raised over $8,000 for ovarian cancer research. It was one of the most wonderful days of my life. (My web page may still be available: www.active.com/donations/fundraise_public.cfm?key=maryak).

I would encourage you to sign up for some physical event – a 5K, a bike ride, a walk – anything. It is specially rewarding if it is also a fundraiser for cancer research.

You will be surprised at what you can do. I am not at all athletic or specially strong. I took things very slowly and went at my own pace. I was amazed at my own progress. For me – it was a switch from being a cancer patient – to being an “athlete” in training. It was enormous. Training for a physical event is the opposite of being a patient and it felt fantastic. It made me feel healthy, strong and in control again. I can’t recommend it enough.

Finally – take each day one step at a time. You will have good and bad days. No one knows what the future holds. The best we can do is to deal with our challenges and make the best of our life.

My cancer may come back, I live with that every day – but I try not to focus on it. I enjoy each day and I am going to assume I am cured and live my life well.

To each of you – I wish you well. Good luck. Have hope. Live well.

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

It took me a little while to get over my anger that this was not caught earlier as i had been to the doctor 3 months prior, talking of pain and discomfort. I am very much aware of how lucky I am to be here, so I am not angry anymore.

I was thinking about talking to someone about lobbying to have ultrasounds or something available to women to detect this cancer. I am obviously here for a reason, not too mention an angel must be watching over me. The cancer was contained to that tumor and did not spread, God only knows why. I think something more has to be done to detect this cancer early. I read everyday women dying from this cancer.

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

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.

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.

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.

My tumor is rare, not able to use the CA-125 marker. I had CT scan done in Sept (the day Hurricane Isabelle hit Richmond, VA), nothing showed up. I had second look surgery Oct. 24th, 2003 microscopic tumor in a very small area found in my cavity. My doc has placed me back on chemo(carboplatnium and taxotere)----- not reoccurence. I was on taxol but it made my neuropathy go CRAZY. My check ups go very well, he is pleased with my progress, but of course cannot make any gurantees. My doc is very aggressive and strict with his course of treatments, but he is very compassionate and a good listener. You want that in an oncologist (all physicans should be that way). I am a survivor and will remain a survivor. Faith and attitude is everything!

But my faith in God and Jesus Christ give me the courage and strength to do what I have to do to survive not only for my family, but for myself. Just talk to our Father through our Brother Jesus Christ they will lead you correctly. Just remember he will answer you, but in his time. One thing about this disease you have to have patience (therapy time, blood work, making sure blood counts are okay check up, CT Scans, etc……).

I have also learned cancer is not a death sentence, which I did not know before I was diagnosed. I have talked to so many people that have had cancer (various types), and they are doing so well. In today's time cancer is a threat to our lives, but technology is moving forward to erradicate the "instant death sentence" we all fear when associating the words cancer:death. Just keep your faith, keep building your relationship with God, listen to your body, listen to your physcian (if you don't have a good feeling about your doc, it is your right to seek other medical opinions), and keep up to date about the new chemos.