Welcome to the group, wb2ud (and a rather dubious welcome as no one really wants to be here).
I had Proton Beam Therapy (PBT) almost exactly two years ago at UFPTI in Jacksonville. It would be very easy for me to be bitter about
PBT, as my PBT failed. (I had more advanced staging than you - check my signature image). I also feel that my PCa probably escaped prior to treatment and virtually any primary treatment would have failed (that's debatable, but I want to look forward, not backward).
So... here are my experiences with side effects. During the last stages of treatment until about
1 month afterwords, I had urinary urgency, flow problems & burning. When talking with my "buddies" & online forums, that is a very common complaint. Today, I pee like a teenager.
There are also a very few complaints of fatigue during and shortly after treatment. Seems to resolve rather quickly. I did not experience this.
In the forums I frequent, the primary long-term complaint is rectal bleeding. Of those folks who experience this have it as a temporary problem about 18 months treatment (radiation proctitis). A small fraction need various degrees of treatment including steroid suppositories, formalin treatment or argon laser treatment. There is currently a debate regarding whether this side effect is greater or less than IMRT. see: Proton Therapy For Prostate Cancer Comes With Side Effects: Study What about me? I've had a few small blood streaks in my stools, but I can't say whether they are radiation proctitis or bleeding hemorrhoids (I have a history).
There are a very few complaints of ED, but many of these folks had ED prior to treatment.
I don't think I've heard a single PBT patient complain about incontinence.
Now, all these are anecdotal reports. One of the criticisms of PBT is that a scientific, peer reviewed study has not been done to prove out these results.
Treatments are a "breeze" - into the gantry, zapped with protons, and out. May folks wince at the requirement for a rectal balloon, but one gets used to this rather quickly.
There are other other downsides:
1) PBT is very expensive comparied to other treatments
2) You may have a fight with you insurance to get coverage,
3) It normally involves 6-8 weeks treatment at a distant location as there are only 8 (I think that's the current number) Proton facilities across the U.S.
Hopefully that is an objective response to your question,
PCa History: VIEW IMAGE
Post Edited (Jerry_Delaware) : 2/19/2012 1:34:52 PM (GMT-7)