Let’s start with what I did ask prior to my treatment this past January. “What’s the best case outcome for my treatment?” The answer was most, but probably not all, of the cancer on my spine will be killed. My second, and last, question was “What are the expected side effects?” The answer was mild-fatigue and possibly some slight nausea, readily controlled with meds.
Those two questions were perfectly good for my first experience with radiation treatment in 2009. That was a conformal radiation treatment after radioactive seeds were implanted. The answers were “it would kill cancer in the areas peripheral to the prostate” and “minor fatigue.” There were no surprises. So I asked the same two questions in January and the answers felt familiar and right. What I failed to realize was that the treatment last January would be at significantly higher doses than the one in 2009. That changed everything for me.
I now realize I should have also asked the following three questions, “If I react badly to the radiation, how will that evidence itself?” I expect (hope?) I would have been told there could be significant nausea and heartburn that meds wouldn’t control. Then I should have asked “How will I know if I should stop the treatment?” The answer is fairly obvious, “if the pain is too great.” Getting the answer to that question isn’t as important as making it clear that I might very well quit and they need to pay attention to me and my side effects. The last question is “When will I be fully, 100% recovered?” That should have surfaced the lingering effects of the treatment – depression and fatigue. If I had the foresight to ask these questions, I would have been prepared to stop at treatment 13. I am positively convinced that treatment 14 pushed me over the edge and I still regret having taken it. I also would have sought more medical attention earlier. On this count, I made another mistake. When the worst of the treatment occurred, my radiologist was out on vacation, so he wasn’t available to consult. Note to self – never schedule a treatment regimen that overlaps with your doctor’s vacation.
I don’t feel I was misled by the radiologist. I do feel he just assumed I’d be the typical case and didn’t cover how bad it could be for me. I should have pressed more, and I feel he should have been more forthcoming about how things could go bad. Lesson learned.
Yet Another Prostate Cancer Blog 