Radiation seems unlikely

Yesterday would've been my first "dose" of radiation.  However, my radiation oncologist cancelled all my appointments.   He called two weeks ago wanting to tell me my PET scan was clean.

I asked what that meant.  It was the third phone call in 2 days to tell me as much, but I wasn't sure what it meant.  Or rather, I thought I did, but wanted to hear it.   What medical oncology called "remission," he called a "Complete Response."   We had expected a bunch of scar tissue from so much tissue, but I had very, very little.  This was completely unexpected after much discussion with oncology and even my surgeon.

The radiation oncologist told me he wanted to make an appointment to sit down and talk to Sarah and I soon, which was last week.   When his schedulers called to verify the appointment, I found out he had cancelled my other simulation and all my radiation.   Clearly he was serious.

We talked last week for about an hour in his office.  He had initially planned on the radiation (obviously) and laid out all the trials for us.  It wasn't a SURE thing at that point, but pretty sure.  The data gave just enough wiggle room that if I absolutely didn't want it, I could probably have gotten out of it with him, but not my medical oncologist.

This time was different.  Now he felt he would NOT radiate.  The whole hang-up was that I don't *truly* have bulky disease after all. The reports in my chart say "bulky" but the unfortunate thing is that actually means something specific in radiation oncology, and they should have just said "large."  The criteria in medical oncology was 6cm (mine was 7cm), but his criteria per the studies was 10cm or 33% of my chest (this was about 14%).  Moreover, although my tumor was huge, it was several huge lymph nodes grown together, which he felt changed the picture as well.

In any case, he would do either thing I wanted, treat or not, but if it were his decision on himself, he would not do it. So, I won't. The risks / benefit ratio is just high in his opinion.

Basically, I've got a ~15% chance (or less, since not really bulky) of relapse. If I got radiation, I'd decrease it to maybe 8-10%, but, I had cancer below the diaphragm, and it could recur anywhere. Usually it is the chest, but potentially anywhere. So, radiation marginally decreases the risk of relapse.

However, the risk of radiation on solid organs (think heart, lungs, esophagus) is about 1% per year. So, basically I have to live 15 more years for that risk to tip over towards not doing radiation. I sure hope I can get 15 more years. 

Furthermore, cancer of the lung or esophagus is serious business.  My chance at a cure for a relapsed lymphoma (or leukemia) is better than solid organ, and during the simulation, he decided he would be hitting a big field with a lot of lung.  This made him nervous.  This combined with the bleomycin (the drug that causes lung problems) wasn't the best situation.

So, am I happy?  Well, sort of.  A very tempered yes.  There are big risks on both sides, so this isn't a fun decision to make.  It is why I deferred to the radiation oncologist.

However, I am comfortable with it, since I think it is the best we know right now.  I feel as though this physician did a lot of work and investigating on my behalf and made a lot of phone calls for other opinions.  Either way could go very right, or very wrong.   So, I'm not really "happy" per se, but I'm comfortable.

On the other hand, in terms of instant gratification, I am a little excited.  Basically, I'm done until follow-up in October.  Until then, I'm trying to cram as much fun in as I can.