Next steps

So, the radiologist did an addendum to the August PET scan, and it confirms my “complete response” read on it. “Complete metabolic response.” Deauville score of 2, for those that know what that means. Dr K told me to come back in 3 month. Which is weird. I’ve been in his office every 3 weeks, plus countless emails, for the past 6 month.

I went back to radiation oncology this morning to discuss the fact I feel like I’m signing my own death warrant. Apparently, if you say that to a doctor, they really get how freaked out you are. So we had a really good discussion and she is sending me up to the proton radiation facility for a consult. What I got out of the appointment is that they will minimize radiation and that it should miss my heart, but proton might offer slightly less radiation in a more targeted manner. However, there is nothing to  say it will be better. And hodgkins needs a lot less radiation than, say, prostate cancer. When she was listing the down sides, her list included things like “it’s all the way downtown” and “treatment windows are about twice as long.” So 30 minutes a day vs 15 mins of treatment, and about the same difference in drive time. Not a huge downside if it’s less likely to kill me.

My insurance is likely to throw a fit about proton radiation. Once again, I’m not listed as something in their approval criteria. However, I think I found a loop hole, if I sign up for a clinical trial or patient registry, they will pay. And the proton center has a patient registry listed as a clinal trial. So maybe that will work.

I know, I know. I’m so down on radiation. I realize that it’s also needed, and yeah, I do have cancer, so there is that thing that could kill me. And radiation works. Proton works just as well with fewer long term risks, at least that we know of so far. https://academic.oup.com/annonc/article/28/9/2179/4082165