Are There Any Survivors in the Room? A Story for Gynecological Cancer Awareness Month

female-dr-comforting-patient“Are there any survivors in the room?”

I don’t remember why I was there, but it was a discussion of cancer. I looked around at the people who had raised their hands. It wasn’t until the speaker moved on that I realized I was a cancer survivor, too.

Does that seem strange? But my first cancer in 2004 was so ambiguous. I had had a routine Pap test, and was referred to a gynecologist. I had had problematic Pap tests before, and it had usually meant I had a uterine polyp or a vaginal infection. This time it was not simple dysplasia. It seems I had precancerous cells, and the recommended treatment was a hysterectomy. I thought about it, and my sister discussed it with a friend who was also a gynecologist, and reported back that surgery was indeed the treatment of choice.

How was I supposed to relate to a cancer diagnosis that was made only after the cancer was out of my body?

I was over 50, and had pretty much gone through menopause, though once or twice a year I would have some bleeding. Everything about my reproductive system was ambiguous. I had started menstruating at age 9, along with the body changes of puberty, but seldom had my periods. When I was 18 and starting to move beyond my circumscribed Jewish Bronx upbringing, I was diagnosed with Stein-Leventhal syndrome. Great, I thought, I finally get a diagnosis, and it’s Jewish! Since that time, the condition has been renamed polycystic ovary syndrome, or PCOS. PCOS is a risk factor for many other diseases, including endometrial cancer.

But let’s get back to the hysterectomy. I had already decided that I would have the surgery when my sister got back to me. What had my uterus done for me lately, anyway? I had the doctors make the arrangements, met with the surgeon, and went through all the pre-surgery rigmarole. I made plans to stay with a friend for about a week after surgery, and checked into the hospital. When I woke up afterward, I was told that the biopsy that was done during surgery had been negative.

When I went back a month or two later for a follow-up appointment, my gynecologist said, “Aren’t you glad you had the surgery when you did?” He went on to tell me that the more thorough cross-section biopsy done after the removal of my uterus had showed early-stage endometrial cancer. The endometrium, I learned, is the lining of the uterus, and endometrial cancer is the most common form of uterine cancer.

reproductivesystemBut that knowledge came later. At the time, I was too shocked to take in the information. How was I supposed to relate to a cancer diagnosis that was made only after the cancer was out of my body? I had already told people that the biopsy had been negative. I had already told myself that the biopsy had been negative!

I don’t think I ever thought of myself as a cancer survivor until my second cancer three years later. This time it was my left kidney, and it was not ambiguous at all. I saw the pictures — there was almost no healthy tissue left, and yet I was having no symptoms. I have written about this experience elsewhere, but the short version is that a CT scan of my chest that was done to diagnose valley fever showed the kidney tumor. I was called in for another CT for a better look, and met quickly with the surgeon who removed the kidney just six weeks after the first scan.

So I have had two unrelated cancers three years apart (and since then have had a couple of skin cancers), yet I’ve never seen an oncologist. In both cases, the treatment was removal of the affected organ, and I never had chemotherapy or radiation therapy after surgery. I sometimes feel a little guilty about that, as if I somehow cheated. When I think of cancer survivors, I think of survivors of chemo, with the sickness and the hair loss.

And yet it’s strange. No one in my family ever had cancer. We die of cardiovascular disease, or in one case, emphysema. A  cousin recently died after a long battle with lung cancer, but she had been a three-pack-a-day smoker for most of her life, and that seems a clear environmental cause. So my history is a puzzle to me.

I keep wondering if I have any other extraneous organs I can afford to lose.