Meeting up with others who are having Proton Treatment

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?

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

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.

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

I had proton treatment for rectal cancer five years ago. It was Scripps then, now California Proton. I'd done research for a friend and know upon diagnosis that I would have Proton. In my case I was avoiding chemotherapy. The diagnosing physician was upset enough to say, "Don't you dare." Dauntless, I flew to University of Pennyslvania where they refused to treat without chemo. I few more trips around and I ended up in San Diego. Dr. Giap ( he is in Florida now) agreed. The following week, I had testing, tatoo markers and the week after began a six month course. I am five years clear, so considered cured.
The treatment itself was painless. I'd spend 30 minutes at the clinic. The actual positioning, summoning of the beam and the radiation was maybe ten minutes of the thirty.
It was easier than any treatment I've every heard of. All of the md's, except at CA Proton told me I was doing the wrong thing.
If you haven't had genetic testing of the tumor itself, somatic testing, you might consider having that done, even if you have to fight for it.
Wishing you the best luck. If there is anything more you think I might know, I'm happy to talk about it. It was a good experience from beginning to end.

jb2buckwater, I chose proton beam therapy at UFPTI. Mayo Jacksonville only offered photon. Even though Mayo Jacksonville has had excellent results with the photon I wanted to do everything possible to reduce the damages affects of radiation as I could.

I came to conclusion with my primary care doctor concurring if doing proton would help reduce radiation damage that is the path I was going to choose. Both proton and photon have the same cure rates. The main difference is that proton releases very little radiation going in and NONE coming out past prostrate.

Photon cannot do this and passes through body, prostrate and out the other side of body.

You will read a lot of pros and cons of doing both. But you are the boss of your treatments and if you do research, get a couple of professional medical opinions, you chose what is best for you.

One thing I will mentioned is try to have the Decipher test done, PSMA and a bone scan.
Decipher will define the risk of your cancer metastasizing. You mentioned having intermediate. That was my initial prognosis but after Decipher was reduced to low risk. My Gleason worst score was 3+4=7.
PSMA will show if cancer confined to prostrate.
Bone scan will determined if spread to bones.

I did not know about Mayo Clinic Connect (MCC) back when I started researching treatments. I learned about these additional test through MCC. if I had known about them I would have asked for them right away. I did have all of them done but would have really helped knowing about them initially.

Good luck!

popkovas, you are going to get a lot of replies on this. I had proton therapy at UFPTI. Mine was 30 treatments (5 days a week for 6 weeks). The treatment itself is a peace of cake. Probably 10 minutes on table getting treated and rest of time is just prep to make sure all is calibrated.

It is the prior testing and procedures like Space/Oar and markers that can be tacking only because they take time to do.

I was not offered the 5 treatment option but the pencil beam. They mentioned I could have done a different type but I have an ICD/Pacemaker and their physics department wanted to keep the radiation as much as possible restricted to not interfere with ICD/Pacemaker.

I think going with proton is a personal decision but try to use a well known and experienced facility. The cure rates of both proton and photon are the same. It is the factor that proton radiation had very little radiation going in and not going past prostrate where photon continues through and out the body.

mikewo, did you have an hormone treatment with your radiation? I did the 30 rounds of proton at UFPTI. My PSA at 3 months after was 1.2 down from 3.75. I was told by oncology/radiology that goal was below 1.

If yours was .1 that is great. Because if you still have your prostrate you will have PSA. I wish I lived closer to Phoenix and Rochester as would have had the proton done there as Mayo Jacksonville does not have proton so could only do photon.

Wish I could help but had the 30 rounds of proton at UFPTI in Jacksonville. My initial consultation and treatment start took several months.

Not sure but you probably will discuss Space/Oar and Markers which is a procedure usually done prior to radiation treatments. You also need to discuss Decipher, PSMA, and bone scans. All of these fine tuned you diagnosis and best treatments for you.

When I had my proton they did entire prostrate and margins. They did this to ensure that even though I had 20 biopsies you can still miss an area or spot in prostrate and thus treat entire prostrate.

Look up my comment to web365 on the topic of "Recently diagnosed" topic as it has my answer to your question about ADT.