After 12 years of struggling with the after effects of rectal cancer, I recently had everything south of my colostomy removed--rectum, anus, a bunch of woody necrotic tissue, and the fissure that has plagued me for years. Actually, Plan A was to clean out the nasty tissue and reverse the colostomy. I was disappointed but not surprised to wake up to Plan B.
Among the tissues removed, they found a few cancerous cells. No lymph nodes were affected. A PET scan showed no tumors, but there might be a few cancer cells left, since the surgeon wasn't looking for cancer.
The radiation oncologist I spoke with said he didn't think radiation would be effective in my case, since they wouldn't know where to aim. Since I've been told over the years that various problems I've had were due to or complicated by the radiation I had years ago, I said I didn't like the idea of doing radiation again.
So I was shocked when the tumor board (several surgeons and oncologists and such) recommended pre-adjutant radiation, plus surgery with radiation during surgery. This sounds crazy to me--they want to do random radiation to counter hypothetical cancer. That sounds like more problems down the road.
I'm very resistant to the idea, especially since I'm still having problems with complications from the surgery 2-1/2 months ago (multiple surgical drains, an open wound that requires packing, nerve damage to my hand.)
I feel like they are only looking at the disease, and not considering my opinions or quality of life. I even keep telling them I'm leaving in October, but they ignore me.
I suspect they think I'll do anything to survive cancer. But this is actually my fourth round of cancer--it doesn't scare me like the first time. And I'm tired of surgeries and treatments that cause new problems without resolving the old ones. I want to go have fun and travel. I want to enjoy a few years before I die, instead of spending the rest of my life in a medical morass.
So I'm disappointed in the results of the surgery, I'm in pain from the complications (and they're a constant nuisance as well), I'm tired of being poked and prodded, and I feel like they're not listening to me.
So I may not be in the best frame of mind to make life altering decisions.
Whaddya think? Anyone here had a similar experience? Words of wisdom?