June 28th, 2010
Be careful what you wish for. It might come true.
The awful Evil Blister started bleeding over the weekend. I have been in such horrible pain that it has left me subdued. (Any other pain connoisseurs out there know what I’m talking about? The it-hurts-so-bad-I-can’t-move pain threshold?)
I was prepared to suck it up for my last five treatments today. I’m in the electron boost phase of things, treatments 29-33. The tech set me up under this unhappy looking little lens.
It’s supposed to beam electrons on me, specifically on the scar tissue, which is the most likely place I will experience recurrence. The electrons “boost” existing radiation to the surface of my skin. My oncologist warned me last Thursday that this area will become increasingly painful through the week.
I got my boost — one sixty second blast — and then I went to go see my radiation oncologist for my weekly check up. She asked about my pain and I explained it, matter-of-factly. (I told you, I was subdued. I was much more anxious and feisty last week.)
She looked at my skin and said, “You can stop now.”
I was nonplussed. I had not seen this coming.
“Your skin is just the right color red. It’s hard to achieve. Sometimes it’s too much, sometimes it’s too little. But you are just right.”
I discussed the matter with her in some detail to understand her thinking. The electron boost is not a part of all cancer centers’ protocols, she explained. It’s more conservative because, statistically, it reduces the risk of recurrence by 1-2%. But there are many radiation oncologists who would not have even ordered this treatment for me, with my particular profile. Considering how my skin has responded, she felt comfortable telling me I could stop.
I shared with her my litmus test for any treatment decisions. “Can I look my children in the eye and tell them that I have done everything I could?”
“Yes. You will be able to say that,” she assured me, without a second’s pause.
I spoke to my oncologist, who feels that the radiation oncologist is very conservative and would not be suggesting this if she did not feel it was safe. And radiation is not a neutral treatment. It increases the risk of lymphadema, skin and muscle hardening, and future skin and blood cancers. If my skin breaks, I risk infection.
When I spoke with my husband and caught him up to speed, he listened carefully. He could hear my hesitation. He thought I should stop. I wasn’t sure. He asked if I wanted to send out an APB to my oncologist contacts and get their hit on the decision.
After talking it through, I realized something. A doctor has to bring two perspectives simultaneously to a clinical decision like this. On the one hand, you want them to know all of the large-scale data, the evidence that is the basis for evidence-based medicine. On the other hand, you don’t want them to treat you from a cookbook. You want them to consider your physiology, your anatomy, your clinical response. They need to know how to think about a particular case.
This is where professional judgment comes in. This is why it is so important for me to understand how my doctors weigh decisions and make use of these two kinds of evidence. I need to trust their judgment because, as much as I geek out, I do not have their expertise.
This is what my tumor cells looked like: Her-2 neu protein overexpression.
These are the little buggers that we are banking on having eliminated.
My doctors know my case. They know what my clinical response was to chemo. They know about the surgical results, everything from pathology to the size of the margins around the remaining tumor. They see the particular color and texture of my skin. They have been prudent and conservative in their judgment every step of the way.
The APB calls are most useful when I need more data, more interpretations based on easily communicated things. I am not sure I need to muddy the waters with more opinions when the people who have closely followed my case have articulated theirs.
I worry that I will regret a decision to stop treatment now if I get a recurrence on my scar site. But I also worry that if I keep going and end up with a secondary lymphoma, I will also second-guess a decision to continue.
As a doctor friend told me, it is disheartening to realize the limits of medical knowledge. This is especially true when it is your life at stake.
I have been sitting under the weight of this all day. Either way I go, it will be a leap of faith.
UPDATE: I stopped. I’m so so glad.
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