Thanks Allen, If you ask to meet with Demanes specifically he will meet with you and he will also still do a treatment if he is requested. Semi retirement, I guess. You can tell he's a guy that loves being there and is not really retired. That's funny about
the pole vaulting. Come to think of it he is wiry like a track and field guy. Ha ha.
What did you mean about
the risk increasing with size when referring to ECE -- are you talking about
the size of the tumor (mine is 6 cores out of 12 / 60-90% cancerous) or the size of the extension (mine said to be microscopic if it's even there)?
I would also tend to think that a microscopic ECE that's an aggressive grade it might be of concern
(I do have some G4 in my biopsy)??
What have you found on your studies of SBRT in terms of its effectiveness on not just intermediate risk but also intermediate risk / unfavorable. Because really the big issue that keeps coming up is that
doctors can't seem to get off the fact that I'm borderline intermediate risk and
intermediate unfavorable (or high risk intermediate). They come to this conclusion due to the quantity of my cancer (60-90%) in those six cores (out of 12) and the fact that there is some 3+4 in 4 of 6 cores.Not to mention now the capsular irregularity and that ECE is likely.
I will end on the fact that Demanes (who has apparently won awards for his diagnostic capabilities) places me firmly in intermediate (as opposed to\ unfavorable intermediate). If I were going to have him do the treatment, I'd be doing HDR monotherapy and we wouldn't be having this conversation.
I'm still considering SBRT. But don't think I'd do the hormone based on this study -- have you seen it?
https://www.frontiersin.org/articles/10.3389/fonc.2014.00240/full
Thanks again for all of your time and support to date!
Best, Richard
Tall Allen said...
Is Demanes still taking patients? He keeps retiring and coming back. He said he wanted to spend more time pole vaulting.
MRIs are notoriously bad at detecting EPE. There are lots of false positives - it's not much better than a coin toss, especially when it's microscopic. (They're pretty good at finding SVI, but you don't have that.) If it is microscopic there is little danger of growing into surrounding tissue, but that risk increases with size.
ADT radiosensitizes the cancer, which can be important if it is large and dense and not well supplied with blood vessels (this is called "hypoxic"). Another way of radiosensitizing it is to have a hyperthermia treatment right before your radiation.
5-10% is not a huge factor when the probability of a cure is about 85-90% anyway - but that is your call to make.