I wish I had more time to make this decision about rads, I really do. Like a year. However, I have 2 weeks, and that’s at the outside. Typically radiation starts 4-6 weeks after chemo, 8 weeks at the outside. I’m at 5 weeks now, and there are appts to be made, sims to be run before the 8 week mark. So, it’s a decision that needs to be made, and not deciding is equivalent to deciding not to do it.
Many thanks to any and all who chime in with opinions – as Jen said, a 40% chance of losing range of motion in my dominant arm isn’t really a good option. It’s a crummy decision, anyway we cut it, because giving up an overall survival benefit of 2-6% (according to a 2007 ASCO presentation) isn’t something to sneeze at.
Here are the questions from yesterday given talks with various support systems, running logical possible scenarios:
If I had a local recurrence (10 -16% chance, depending on source), and I hadn’t done radiation, what would that feel like? There is one school of thought where you do everything under the sun to stop any chance of cancer, consequences be damned. But that’s no guarantee either, and those consequences, well, they’re quite something.
If I didn’t do radiation, and I got lymphedema anyways (10 -35% chance, depending on the source), what would that feel like? Would I have wished that I had done the radiation, given that I ended up where I didn’t want to be anyways? But I also know that there are a bunch of things I can do to lower my chances of lymphedema so I don’t see this scenario happening, but of course no one does.
Clearly both options are bad. It’s hard to know how I would feel until I get to that bridge, and I’m a big fan of not crossing bridges until they come. (I’m also a big fan of getting off the road that leads to a bridge that you don’t want to cross, and placing oneself on a brighter path, and therein lies the rub. Sigh…)
Here’s what I do know: with my niece’s liver disease, if it gets to the point that she needs a liver transplant and I hadn’t done everything within grasp given my talents and capacities to delay that need as long as possible, I would feel terrible. But none of the things that we can do for her cause harm, so this radiation decision is qualitatively different.
My circumstances are not the same as Katie’s: radiation for me is not healing. I think the decision to cause oneself harm in order to prevent possible harm is just more than I can grasp right now, so the decision is probably no.
If there is a recurrence, I’ll cross that bridge when it comes. Even if it means surgery again, chemo and radiation. For now, I’m done.
Unless….unless there’s a middle ground, some version of radiation lite that could perhaps prevent a chest wall recurrence (where I think the majority of recurrences take place) without causing damage to supraclavicular or axilla lymph nodes. That might be an option.
Also, I feel better than I did pre-diagnosis, and that’s a wonderful thing. I haven’t felt this good in a long, long time and I want to stay this way. It’s not something to toss away lightly, even temporarily.