Congratulations. I have a few questions, because I - like you - will choose Proton Beam Radiation instead of conventional Radiation Therapy, "if" my cancer returns. I am 14 months post-RP with a pt3b cancer that was barely a Gleason 3+4=7 at biopsy, but has a 25-50% likelihood of recurrence "within" five years. I am still only 98% continent (I still have some leaks), and my sex life is ZERO. My urologist said he spared the neurovascular bundles necessary for erections and optimal urinary continence, but I haven't had an erection in 14 months.
My questions are:
1) What urinary side effects did you experience, if any? Any ongoing, now-lifelong incontinence, burning, etc.?
2) What sexual side effects have you experienced? Do you have permanent ED? Did any of the common meds like Cialis or Viagra help, or did you not need them?
3) Any rectal/bowel consequences whether temporary "during", Proton Beam therapy, "just-after", or "ongoing."
4. Any additional long-term side effects (energy, weight, behavioral, etc.)?
5. Did your insurance company pay for the Proton Beam Therapy? If so, who is your insurance provider? I am now on a Medicare Advantage HMO Plan that may not pay for it, if/when I need it.
I ask because I read enough of all of the life-long side effects of standard Radiation Therapy, such that I will never do it if/when the time comes for it. I read that it of course targets the area(s) and destroys the cancerous cells (if successful), BUT that it also "passes through" to healthy surrounding tissue (bladder, urethra, rectum) causing damage to those health tissues, to include the permanent, life-long urinary incontinence that a RO told me during a consultation visit I had. He also mentioned likely rectal/bowel issues. I decided right then and there, that I will NEVER have standard Radiation Therapy. I will drive as far as I need to drive, in order to receive Proton Beam Therapy, which of course goes "to", but not "through" the target cancer tissue. There is no damage to surrounding healthy tissue.
Your story validates my research on standard Radiation Therapy vs Proton Beam Therapy.
Thank you, in advance, for your reply to my questions.