Meeting up with others who are having Proton Treatment

See this related discussion:
- Starting Proton Treatments for Prostate Cancer: Any experiences? https://connect.mayoclinic.org/discussion/starting-proton-treatments/

It was not long at Mayo Phoenix. I could look up my notes, but I was looking at % treatment photon at the same time so some of the delay was probably me. Do the 5 treatment SRBT Proton treatment as it is a piece of cake. My 3 month PSA after was less than .1 or undetectable.

Hello!
Is there someone who can share their experience about proton therapy?

I am in the process of obtaining a consult with Mayo in Rochester to see if I am a canidate for the the 5 treatment proton therapy. I am curious for those that have had this treatment, what was your wait time from the initial consult to when you could start the therapy process?

Just wish there was a MRIdian facility near me. Closest is in California. So I will have to make do with proton at Mayo. I am getting SpaceOar.

I am about to start 5 treatment proton radiation and after seeing the article on a study just out on localized prostate cancer I am wondering if being treated is even worth the risk. The study followed 500 each of a prostatectomy, radiation, and doing nothing but watching it for 15 years and the death rate from prostate cancer was the same at 15 years for all three. That makes me 90 and I am wondering if risking the side effects is even worth it and the doctors sure won't tell you to not do anything as then they don't get paid. The article did not mention Gleason Scores but just that it was localized prostate cancer. What quality of life will we all have at 90?

Bens1 did his research... everyone should do the same. Speak with multiple Drs and Patients. Most patients I fear rush into a decision and have a Radical Prostectomy because this is what their Urologist does for a living.

I chose the Mayo Rochester 5 Treatment Proton SBRT. Last treatment January 19. I experienced some urinary restriction post treatment as well as minor fatigue. Urinary restriction was not sufficiently bad to cause me to try Flomax. Many choose this route and it makes perfect sense if restriction is painful and or disruptive.

New procedures and techniques are progressing continuously. Stay on top of it and review prior to making any decision on treatment approach best for you.

Best wishes and God Speed.

rockin2047: a lot has happened since I posted that in November as a patient but to answer your questions, the MRIdian was what I ended up using. It was 5 treatments with 2 mm margins. My last treatment was February 14. The margins are really important and the margins are from the edge of the prostate. I had the same concern as you regarding healthy tissue. So far the side effects for me are some urine restriction but Flomax gives me about 85% urine flow and I feel a bit more tired than usual.

I looked into HIFU which struck me as limited data with results that anecdotally did not last. I looked into cyberknife, brachytherapy, cryo and heat ablation…and narrowed it down to Proton therapy and the MRIdian from Viewray. I chose the MRIdian for its narrow margins, real time MRI/radiation combo unit and automatic gating shutoff.

I did not spend any time on webmd. You may want to look at nccn.org formed by Dr’s for Dr’s and patients. I would also consider spaceoar.

I have a Gleason 3+4, and also two Gleason 3+3 with a PSA of 3. Am currently waiting on the results of a Decipher test. Of the treatment options you have researched which one offers the best chance for eradicating the cancer while preserving healthy tissue?
Regarding radiation therapy WEB MD said "can also cause significant side effects such as erectile dysfunction and incontinence. But many of these less-invasive procedures(treatments) don't always completely eliminate the cancer, and some treatments can't be repeated if the cancer comes back." Then there is High-intensity focused ultrasound (HIFU): which delivers intense sound energy to destroy the tumor without damaging the surrounding tissue. WEB MD said "Side effects included difficulty urinating in the first two months after treatment, but the symptoms were easily treatable with medications." HIFU is a form of ablation treatment. HIFU generates heat to destroy the tumor while another form generates cold to freeae the tumor.
What are your thoughts?

I just completed my pre-treatment work up having the markers and spacer installed. I just have to say that I was blown away by the docs and the very caring staff who did all the work. I am so happy I made the call to come to Mayo Clinic Rochester to have my cancer treated.

Doug