“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 that I was a cancer survivor too.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
Does that seem strange? But my first cancer was so ambiguous. I had had an ordinary PAP, and was referred to a gynecologist. I had had problematic PAPs 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 pre-cancerous 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.
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 nine, along with the body changes of puberty, but seldom had my periods. Eventually at age 18, 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 Poly-cystic Ovary Disease, or PCOD.
But let’s get back to the hysterectomy. I had already figured out 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, and 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 in to the hospital. When I woke up afterwards, I was told that the biopsy that was done during surgery had been negative.
When I went back a few months 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.
I was shocked. 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 showed the kidney tumor, and 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 never saw an oncologist. In both cases, the treatment was removal of the effected organ, and I never had chemo 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 cardio-vascular disease, or in one case, emphysema. A cousin recently died after a long battle with lung cancer; 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.