My name is Linda and I am a stage IV ovarian cancer survivor. My story starts in April of 2002 at age 53. I had my annual physical. I mentioned to my doctor how tired I was and how I just couldn’t do the things I usually do without taking many breaks. Intercourse was very painful and I always felt like I was coming down with something but didn’t know what. I found myself rubbing my stomach because it hurt all the time. After a Pap, Pelvic exam, Mammogram, blood work etc., everything was fine and my fatigue was passed off as “nothing to worry about.” It was probably just because of my weight. I have been heavy my whole life so that didn’t make sense to me but I accepted it.

Two weeks later, I told my husband I felt like I had a cold coming on. My chest felt tight, like someone was sitting on it. A few days later the tightness in my chest got worse. I had trouble breathing so I went back to the doctor. This time I had a chest x-ray that showed fluid around the lungs. I was rushed to the hospital and admitted to the cardiac unit. After two days of tests on my heart, the results showed the heart was fine but the fluid was getting worse. The fluid was tapped and when it started filling the bag the doctor told me it didn’t look good because the fluid was red and not clear. Analysis of the fluid showed ovarian cancer cells. I was given a CT scan - it showed nothing. Further analysis showed I have a form of ovarian cancer called “floating or flaking cell cancer”. It was explained to me this way: I do not get tumors, the cancer cells float around in the body cavity attaching themselves to the outside of organs like post-it notes. As they pile up they flake off and continue to float around. Mine had gone past the diaphragm and they were attaching themselves to the outside of my lungs causing fluid buildup.

My CA125 was 278. Because the cancer had spread I was started immediately on Carboplatin and Taxol chemotherapy. After three sessions of chemo I was scheduled for surgery. When my surgeon opened me up, he found no cancer, only scar tissue where cancer had been. After 100 biopsies he decided to remove only the ovaries. He told me the uterus was healthy, pink and showed no sign of cancer so he left it in. I had three more sessions of chemo and was in remission for two years.

In September of 2004 my CA125 started to go up from a steady count of 12. Again, nothing showed on a CT scan or on a PET scan, but when my numbers reached 40 I started Carbo/Taxol again. The chemo reduced my CA125 to low levels and I was in remission for a few months. In June of 2005 my CA125 jumped again and I went back on Carbo/Taxol. Again, my numbers dropped and I was in remission until January of 2006 when a Pap showed my cancer was back in the uterus. I had surgery to remove the uterus and six more sessions of chemo. I was in remission until September 2006 when my CA125 jumped to 57. I went back on Carbo/Taxol for six more sessions.

Every time my cancer returns, I feel it before the CA125 starts to rise. My symptoms are small but noticeable. I get tired quickly and resting does not seem to make the fatigue go away. I have an overall feeling of not feeling good -- nothing specific, I just don’t feel right. I get short of breath. This is the case now. My CA125 has been rising and I will be starting chemo again soon.

My husband and I can look back now and see where I probably had the ovarian cancer two years before it was diagnosed and my oncologist agrees. I had a lot of the symptoms and a strong family history of breast cancer should have made my doctor more suspicious. All my life my weight has been blamed for my symptoms. Doctors assume I have high blood pressure – I don’t. They assume I have Diabetes – I don’t. When I complained about being tired they said it was because of my weight even though I have been very active and worked circles around people for years. I hope by telling my story I can show you how sneaky ovarian cancer can be. I have been very lucky that Carbo/Taxol treatments continue to kill my cancer and I have lived longer than anyone expected. I will continue to fight this monster called ovarian cancer and tell my story so maybe someone else will have an early diagnosis, which will lead to a long remission.

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