Two years cancer free!

I had my two year post-cancer hematology appointment on Thursday. The doctor said my bloodwork looked great, then she poked at me to see if she could feel any lumps, and said "see you in 6 months!"

I asked about risk of recurrence at this point and was told it is quite low at this point. I was told I had about a 50% chance of recurrence when I was diagnosed but that has dropped two years out. However, there have been no good long term studies for people with PTLD so she can't say the word "cured."

(With some cancers, it's considered cured if it has not returned in 5 years. Although some doctors still don't like to say "cured" and "cancer" in the same sentence, it is becoming more common.)

Just like there were very few studies to determine survivability rates of PTLD, the recurrence studies into PTLD (to determine the length of time that puts people into the "cured" zone) have not produced very good results. Most of the people tend to die from other non-cancer complications, like rejection or infections, before the end of the 5 years studies.

The sample size of these studies would be fairly small, due to only about 1-10% of the transplant population ever getting PTLD and most people who get PTLD tend to be older kidney or liver transplant patients. When trying to translate that to a young person who had a lung transplant and PTLD, it's hard to draw any conclusions.

I was also told that last year, guidelines came out for the treatment of PTLD. The new recommendations are to have 4 weeks of Rituximab and 4 cycles of R-CHOP. The doctor said I probably would have gotten about 6 cycles of R-CHOP since the cancer was extremely aggressive and because I "handled chemo so well."

I didn't feel as though I handled chemo that well but I guess I don't really have anyone to compare myself to. Two extra cycles of chemo in retrospect wouldn't have changed that much. Well, it would have been two fewer hospital admissions, two fewer "Am I going to die from this"-feeling fevers, and less white-blood-cell-growing pain, so that would have been nice. But now I feel more confident that they got all of the cancer cells with the 8 cycles.

I'm personally concluding that "death by cancer" is now at the bottom of my "how will I probably die" list. Rejection and/or infection has bumped back up to the #1 spot!