Rads scenarios

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.

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2 Comments

Filed under breast cancer, radiation

2 responses to “Rads scenarios

  1. Well, everything’s got risks to it…I went through this decision last year, before the thyroid cancer appeared and my doctors started talking about doing bilateral mastectomy instead of radiation, and that’s what eventually happened. I’m still relieved about it: my docs just didn’t think that the radiation would improve the odds, so it didn’t happen. Later, when I had the radioactive iodine treatment (I-131) for thyroid cancer, I found out that I-131 increases breast cancer risk, so the benefits of having radiation to the chest might have been negated altogether. I guess I’ll never know for sure.

    You can do everything right: chemo, rads, hormone therapy and STILL get cancer again, and you can also have only some of these and never get a recurrence. I wish oncologists understood all this stuff a little better…gene testing, hormone testing, and we still end up unsure of where we’ll be in 5 years.

    It just feels *so* important to be part of the decision, and I’m glad that you’re so involved in yours.

    May you feel good for a damn long time.

  2. Sheryl

    I liken the radiation decision to our living donor decision with Justice. Can we do with what we’ve done until “the time” comes? Or should we be more aggressive? We chose to hit it hard. It worked for us. Of course we know others with devestating consequences making the same choice. So what it comes down to is what is in your heart. You are without a doubt the most research oriented person I know—serious consideration should be made for going pro! So I know you’ll do the right thing for you. And in the mean time, you remain in our prayers.

    Hope to see you at the next Lifesaver’s breakfast if not sooner!

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