Every woman with Ovarian Cancer has a story and this one is mine. I did see my Gynecologist during this period, but he wasn't the one who discovered my cancer. When I finally got my final diagnosis, I had two primary cancers: Stage IV Ovarian Cancer and Advanced Localized Breast Cancer.
Here is the story of eight months in the life of an Ovarian Cancer patient:
In July 2000 I thought I was in good health, maybe not perfect, but good.
My only complaints were a bit of asthma, a few minor allergies treated with Claritin, a tracheitis problem that kept coming back with a cough, and a few extra pounds I couldn't lose. I was 52 years old, married for 14-1/2 years, with a 10-1/2-year-old daughter. I homeschooled my daughter, was one of the leaders of her Girl Scout troop, and did some part-time work writing web pages.
One week after the Fourth of July I went to my Primary Care doctor (an Internist) for a regular six-month checkup without any worries. My risks for cancer weren't a consideration. I always heard that you need to have a sister or mother with breast or ovarian cancer to have an increased risk. I didn't. What I had was a paternal grandmother who had died from breast cancer in her 50's, a paternal aunt who had died from cancer in her 50's, and a maternal aunt who died from ovarian cancer.
I casually pointed out some swollen lymph nodes on my neck that I had first noticed when I had been sick with a virus. How long ago? About six weeks. Too long he said. He wanted me to have it checked out so he referred me to the same doctor I'd seen 8-1/2 years earlier for a partial thyroidectamy (benign). He saw me two days later. I should have known I might have a serious problem when my doctor made the appointment for me. In July I had a CT scan of my neck, followed by an ultrasound of my neck.
On August 3 I had a strictly routine yearly exam with my gynecologist. All he said was get a mammogram and come back next year. I had an infection in my umbilicus (that later was diagnosed as a metastasized tumor from my left ovary) which he looked at and told me that it would have to be lanced if it didn't clear up.
I had a lymph node biopsy on August 9th. On August 15th my internist gave me the diagnosis: papillary adenocarcinoma. I asked him to write it down. He told me that the lymph node was not the primary site and that the next step was to find out where it came from. He referred me to an oncologist at St. Barnabas Cancer Center. The first appointment available was for the day after Labor Day. In the meantime I scheduled tests: mammogram, thyroid ultrasound, nuclear thyroid scan, CAT scan.
I met with the Oncologist the day after Labor Day. He set up an appointment with a breast specialist for the following day since the mammogram results were suspicious. I had an ultrasound in the breast specialist's office and he arranged for a biopsy to be done on Friday when he confirmed I had localized advanced breast cancer.
The lymph node tumor was on the left side and the pathology report indicated it was not from the breast cancer in my right breast. Another week was spent figuring out the origin of lymph node involvement to rule out thyroid cancer. I arranged to pick up slides from my thyroid surgery (8-1/2 years earlier) and brought them to my oncologist. He called us in for an appointment on a Friday when he gave the final diagnosis: ovarian cancer and breast cancer. By this time it wasn't a surprise because I'd thought that was decided a week earlier.
I was referred to a Gyn-Oncologist with offices two floors up. We took the elevator and made an appointment for the following Monday. The doctor was leaving for the weekend when we were in the office and he talked to my husband and myself. He and the oncologist had already spoken about me. On Monday, after examining me, he scheduled me for surgery as soon possible to remove my uterus, fallopian tubes, ovaries, and umbilicus (definitely metastasized from the tumor on my ovary) as well any other sign of cancer. He explained his philosophy on surgery. He won't do too much because he doesn't want to affect my quality of life.
We got a call later in the day - surgery was scheduled for Thursday. Surgery was scheduled to take 1 to 2 hours. Instead I was wheeled into recovery after just 25 minutes. There was such a big difference between the CAT Scan done on September 2 and surgery on September 28 that the surgeon was surprised. He wasn't able to remove as much as he planned. He wasn't able to remove my ovaries or tubes. He did remove my uterus, omentum and umbilicus. As he explained it to my husband, if he wanted to take all the cancer out, he would have had to remove everything from here (hand held high) to here (hand held low) and that was just too much.
On October 2 I had my first of 6 taxol/carboplatin treatments and went home. By Sunday I felt well enough to take my daughter to church. I had treatment #2 on October 23. The doctor measured the remaining lymph node tumor and said that it was smaller. He also thought my breast tumor was smaller. By Sunday I felt well enough again to take my daughter to church. The following week I felt well enough to take my daughter and her friend out Trick or Treating. They got tired before I did!
I saw the GYN-Oncologist and he reported that both he and my oncologist believe I'm making good progress. All indications from the exam were that the chemo is working to reduce the size of everything that could not be removed during the surgery. If all progresses well, my oncologist will tell me when it is time to go back to see him and have more surgery to finish what he started. I have chemo #3 the day after my 53rd birthday. My CA125 is down to 350 from a pre-surgery 451. By Sunday I managed to take my daughter to church but I didn't feel well.
I had another CAT scan done on December 1. They were not able to find a vein to inject the contrast, so I only had it done without contrast. The results were basically the same as the one on September 2, but a little worse. However, there was a 3-1/2 week delay between the first CAT scan and surgery, and the surgeon had been surprised by what he found. I think that a comparison might not be very valid because of that delay. If this CAT scan looks a lot like the one on September 2, that might indicate an improvement from the time of surgery. I hope I'm right and it isn't just wishful thinking.
I had Chemo #4 on Monday, December 4. On Friday I got the results of the blood tests. CA125 went down to around 250 but the CA27/29 went up to 44. My doctor didn't understand this since the tumor in my right breast is smaller. On Sunday I didn't get to church. It was the first Sunday that I missed going to Mass since I got out of hospital on October 2nd. I was still feeling very fatigued. It seems each time I have chemo the fatigue lasts a few days longer.
I felt great for Christmas and was strong enough to bake (and eat) a lot of cookies and I only gained one pound! I have chemo #5 the day after Christmas but won't see my oncologist until January. Then he's going to setup another CT scan and more blood tests. I'm hoping those tests will show some progress. On Sunday (New Year's Eve) I missed church again, but our cars are still snowed in anyway. I'm feeling more muscle and bone aches and fatigue this time. I don't get any real nausea from chemo but my appetite is off and things don't taste good.
When I went for my checkup on January 8th the lab nurse had a very difficult time getting blood out of me for tests. The chemo nurses had also had a hard time with my skinny little veins. My doctor told me that the time had come to have a port installed. That was done on January 11th. The surgery lasted one hour, longer than the surgery in September.
On January 16th I had the last of six scheduled chemo treatments with Taxol and Carboplatin and was scheduled for another CAT scan for February 5th. I know my GYN-Oncologist wants me back for more surgery at some point. As he pointed out, it isn't advisable to leave ovaries in a woman who has had ovarian cancer.
During January I started taking Glutamine before and after chemo to see if it would help the neuropathy in my feet. It seemed to help in reducing it. At least they didn't hurt at night from the weight of the covers and instead only felt a little numb and tingly.
I had another CAT Scan on February 5th. The results showed no change from the last CAT Scan. I was told this means that my disease is "stable" and I am to have two more treatments of taxol and carboplatin. I had treatment #7 on St. Valentine's Day. I'm glad that my husband gave me my box of chocolates the day before, because I quickly lost my taste for them from the chemo.
I'm taking one day at a time. It is hard not being able to plan ahead. It is hard not knowing whether I'll be feeling well enough to go camping with my daughter's Girl Scout troop in May. It is hard not knowing whether I will be able to go with my daughter and her friend to the In-Sync concert in June. (Last June we saw Ricky Martin.) I'm taking one day at a time.