Linda: Clear Cell Ovarian Cancer

Linda: Clear Cell Ovarian Cancer

Hello! I was diagnosed with clear cell ovarian cancer on March 31, 1993 at the age of 45.

My story actually begins about 3 months prior to my diagnosis. I had my regular appointment with my gynecologist for my yearly physical exam. I had no physical complaints and I was feeling well. The exam went well, my pap test was normal, the doctor wrote "well woman visit" on my paperwork and said: "See you in a year."

Just about a month or 6 weeks later, I began to notice a mild discomfort in my lower abdomen that would seem to come and go. I didn't think anything of it since I had just seen the doctor and everything was fine. Then I began to notice a few other symptoms such as my belly looked almost pregnant from a side view, but I attributed it to poor posture or just plain aging. I also noticed I needed to use the rest room more frequently after just a couple cups of coffee whereas before I could drink a whole pot of it.

By now, we were into March with the real doldrums of winter where everyone was anxious for spring to arrive. I thought I was dealing with depression as my father had also died in March several years prior and I always felt down that time of year. I just thought the depression was taking the form of physical symptoms this time. I decided to call my gynecologist to have him check me again. I fully expected him to say nothing had changed and he would write me out a prescription for a mild antidepressant to get me over this slump. I had never taken anything like that, but I thought there is a first time for everything.

I was able to get an appointment right away and to my surprise, he said: "There's definitely something there that wasn't there 3 months ago." He had blood work drawn right there (CA-125) and sent me for an ultrasound. Something was obviously found on the ultrasound and the doctor wasn't sure what it was other than being large and needing surgery. He explained that it could be just a cyst, in which case he would just take it and the ovary and fallopian tube on that side. If there was any cancer, he would do a full hysterectomy, but of course, I would not know until after the surgery.

As I was being wheeled into surgery, the last thing my gynecologist said to me was: "At least you don't have to worry about ovarian cancer as your CA-125 is only 35, which is normal." Imagine my shock when he told me in recovery that I did, indeed, have ovarian cancer!

At my post-op check-up, he referred me to a gyn/oncologist. I never knew there was such a specialist! When I saw her, she explained that clear cell ovarian cancer is considered very aggressive, is non-differentiated, and is a grade 3 cell. Because a gynecologist had done my surgery, I did not have any lymph glands removed so I wasn't staged. The gyn/oncologist said usually that matters, but with clear cell it wouldn't matter since it would need to be treated aggressively in any stage. She said that I was probably a stage 1-C or III-C because the tumor had adhered itself and had to be broken to be removed, so obviously some cells had spilled out.

I had 6 doses of monthly chemo that really knocked my white cells down and after the third dose, I ended up in the hospital with an infection. To finish my final 3 doses of chemo, I had to have 14 doses of Neupogen a month to raise my white cell count.

After I finished chemo, I had a CT scan that was clear and I opted for a second-look surgery. I really wanted the lymph nodes biopsied to see where we stood. I also had another surgeon remove my gallbladder and appendix at the same time so I wouldn't have to worry about those later on.

I did have testing for the BRCA 1 & 2 genes and was negative for both.

During all of this, I was a very active wife and mother of 3 in 3 different schools. My youngest child, who was 11 when I was diagnosed, was diagnosed herself with end-stage kidney disease within a week of my diagnosis. In fact, they did a bone marrow biopsy, thinking she may have leukemia (she was very anemic) and I was wondering how on earth I would care for a child going through chemo at the same time I was going through it! As it turns out, she had to start dialysis and my husband donated his kidney to our daughter 5 weeks to the day prior to my second-look surgery.

I've had several scares over the years, including a very painful lymphocele that looked "very suspicious" according to my gyn/oncologist, but proved to be benign when I had it removed. I also had a total bowel obstruction just a couple years ago, but that was due to adhesions and no sign of cancer.

I am so grateful for my life and never take one second of one minute of one hour of one day for granted. I saw a blurb in the Rochester newspaper asking for ovarian cancer survivors who would like to speak with those who call the SHARE Helpline and of course, I volunteered and have been doing it for many years now. I also am one of the panelists of Survivors Teaching Students where we tell our stories to upcoming physicians, nurses, nurse practitioners and physician assistants. I never knew my maternal grandmother actually died of ovarian cancer until I got her death certificate and read that! I was always told she had some form of "female cancer," but none of the doctors I had ever seen over the years said that it may have been ovarian, so I do impress this upon the students in the Survivors Teaching Students program.

I continue to be very active and go to water aerobics two nights a week and a gym three other days a week. There is a bulletin board at the gym I attend and I always am sure that there is a SHARE symptom card posted there. If someone takes it, I replace it the next time I am there. In closing, if I can offer hope or at the very least, a kind, listening ear, I feel I have done my job.

Want more information on clear cell ovarian cancer? Check out our ovarian cancer resource links.




Linda is a SHARE Helpline volunteer.