06 April 2010

Two more doctors

I had appointments yesterday and today.  Two new doctors.   Both were good appointments, however.


Yesterday's appointment was at the University of Colorado Cancer Center.  We met with an oncologist, but really the meeting was with a geneticist.  The question we had was that if Sarah and I were to have children, what would their cancer risk be?


As I've noted before, my sister had childhood AML (leukemia).  So, two siblings and two blood cancers.  It seemed like a reasonable question to ask, and the geneticist agreed, but anyone with a science background could have predicted the answer.  We did: the answer was "Unsure."  They were willing to venture a guess, and basically our kids would have double the risk for a blood cancer compared with the background of the general population.  However, given the rarity of blood cancers, the absolute risk remains quite low.   This is obviously only sort-of reassuring.  Since my sister's cancer was childhood, risk to her kids would be higher still, but similar story.


Prior to the appointment, Sarah and I filled out a detailed family history on other family members with cancer.  They made a very nice chart with it, and they'll keep track of it.  They requested that if we learn more about our family, we update them, and they keep these records for epidemiology purposes.  (In other words, so that later generations can predict better than we can).  In the end, the visit seems to be more beneficial to them than to us, but it was nice to know our expectations were about right, and that we weren't missing anything glaring.


My visit today was with a radiation oncologist over at the hospital.  It was a long but very productive visit.  We had a lot of questions answered, but there remain a lot (that likely cannot be answered).   We were under the impression that radiation following chemotherapy was absolutely imperative.  It was as if there was no question about it.   Today we learned that wasn't necessarily the case.


My radiation oncologist was absolutely great.  Besides being a cyclist, he took a very long time going through clinical trial after clinical trial explaining the findings.  He described the rest of the department, which have all come from a variety of major cancer centers.  He presented my case to many of them to ask their opinion.  What we discovered was a huge variety of treatment possibilities.  As it turns out, for Hodgkin's Lymphoma stage III, radiation doesn't have the perfect evidence that so many things in, for example, cardiology does.   Only one study showed a survival benefit with radiation.   What became clear is that while radiation does prevent relapse, the risks (other malignancies and other issues) were very real. Different academic cancer centers across the US would treat me very differently.  So, radiation isn't necessarily a foregone conclusion.


Having said that, he plans to meet again with my oncologist to discuss all possibilities.  We got the impression that if it were him in my position, he would go with radiation.  However, he wanted to limit the dose to a level below a threshold that had made Sarah quite nervous after all of her readings.  The other changes from our expectations were that it would probably be 12 week days of radiation, and I'd start 5-6 weeks after my last chemo instead of the 3 we had anticipated.   So, while I'll defer to both of these experts, it sounds like radiation is still on.   Still, the decision is mine, and it is not a light one.  There are definite risks to either case.  No radiation may increase my risk for relapse.  Radiation increases my risk for lung or esophageal cancer or possibly heart failure.   So, this isn't exactly like choosing on the showcase showdown of "The Price is Right," but you play the hand you're dealt and we'll talk about it more as time goes on.   In either case, no sense worrying right now, I have chemo to finish first.  

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