Starting Proton Treatments for Prostate Cancer: Any experiences?

@metman, I moved your question about proton therapy for prostate cancer to the Prostate Cancer group in this existing discussion:
- Starting Proton Treatments for Prostate Cancer: Any experiences? https://connect.mayoclinic.org/discussion/starting-proton-treatments/

I encourage you to read through the past posts. Also note the responses you got from @dandl48 and @gregorylynn

Metman, when will you start radiation treatment? Do you have specific questions you'd like to ask?

Hi sir , I am going for a mri then biopsy in September I am a 3+3 now one lesson shown only 1.3 size thank you for your information sir

10 weeks proton radiation at LomaLinda, one the first to use proton radiation for various types of cancer to include brain cancer in children. PSA at 6.4...cannot recall Gleason score, but low. I had
absolutely no after effects except being tired....due to radiation.

This was March of 2010 at age 65. Insurance M-Care and Tricare for Life. I paid nothing except for housing during that time. Please note various hospitals including Mayo do not accept the two I mentioned...if incorrect...moderator at Mayo, please comment on this point.

Lastly, PSS has risen from near zero after treatment to currently 2.1.
Where the treatment is and the methodology of same may make the difference. Cheers guys!

Hi desertrat
Where do you live in AZ? I am in Yuma. Going to Mayo Phoenix on
Dec 21 for PSMA PET. and conciliation on the 22nd. Getting shy about
Hormone therapy as I'm 83 but I feel a lot younger than that How difficult
will the treatment decision be concerning all the options?

PSA 10.5 diagnosed with Gleason 3+3 mid-September. Read Wash's book, Surviving Prostate Cancer. All currently available treatment options are described in detail including possible side ffects both short-term and long-term. Proton beam or active surveillance made the most sense to me and chose proton beam. Now at Mayo Rochester and had my first two visits are in the rear-view-mirror. Day 1 blood test, enema, very brief meeting with Dr and Assistant, marker placement (4 carbon markers are injected into Prostate, sounds bad but if you handled biopsy without major league pain you will likely feel less pain with marker placement). Day 2 was much shorter and even easier than Day 1, Started with Enema, CT simulation scan and tattoo dots (CT is a piece of cake and then 3 small dots are tattooed to abdomen to assure proper positioning on Proton Beam table. A soft mold is also created for your legs to keep them still during radiation), next an MRI was taken... only 15 minutes in the tube, day 2 ended with a PRO Survey which is an introduction to the Patient Experience Survey. Day started at 8:45 and ended by 11:30... sweet. Super easy, non-invasive (no rectal probes, injections). 5 PB Radiation Treatments start 12 days later 12/27. Finish 1/9/2023.

My Bone scan and CT scan show small growths in T10, T11 and left hip socket with 1" x 1 1/2" of metastasis in L1 lumbar My L2 was radiated almost 2 years ago and put back on Zolodex injections every 3 months which will continue
In Jan medical oncologist medicating me with 3 daily pills of Enzalutamide oral chemo for life and they may use radiation on L1 and other spinal metastases
The say good probability of 5 years and maybe more I'm 78 Prayers so important
Ideas welcome

Hello Mr. Olson, I finished my radiation treatments in April and life has returned to normal. My PSA is down to 1 right now so all I will do is get checked periodically to be sure it doesn’t go back up. I highly recommend listening to the folks at Mayo, they seem to be the best to me. To me, taking the hormone therapy would be preferable to dying from prostate cancer. My Dad died from prostate cancer and it was difficult for him (and his family). Best of luck, and hang in there!

Gleason 4 +3 PSA 4.7
I did 6 months of Lupron testament and 20 protean beam treatments. I had issues and regret using the hospital that I did. Their main concern was pushing as many people a day thru the machine as they could. They had no concern if my bladder was full when they pushed the button. I had a lot of leakage issues after treatment as a result of this. After treatment my PSA .01 but I had difficulty walking and no energy.
I discovered on my own that my testorone was like 65 and started TRT and feel fine again but now my PSA is .2 and my Urologist is whining.

My advice is to make sure you drink plenty of water before you get in that machine.

It has been 10 years or so since Loma Linda for proton radiation. They used a full body mold.
When in the mold and on the system to which you (and the mold) are attached, they place a balloon up your rectum which apparently makes the target location on the prostate more defined. A dry run, if you will was done whereas the machine to which provides the radiation "locks" on the location of the cancer. So, every morning this was done for 10 weeks.

Usually at that time, there were two machines for prostate and several more for other patients undergoing proton radiation therapy. Loma Linda is a children's hospital and proton was use for children with brain cancer. That alone provides a proof source to the exactness of the procedure.

The waiting room for those of us waiting in the morning as we were in gowns (the back open) and slippers. So, I had a chance to speak briefly with perhaps 10 or 15 patients over my time.
Nearly all were doctors! That alone provided the ultimate proof source to my decision on what and where.

The "brotherhood of the balloon" was a well used phrase..those of us who used the balloon as mentioned above. No doubt other forms of exactness are used. so check around so you understand exactly what and how the procedure is administered.

Wow Jrhamp, thanks for this details of how Proton Beam was performed 10 years ago. It has changed dramatically, especially the length of treatment, now 5 treatments over a 2 week period. No balloon either, in fact nothing intrusive once the 4 carbon markers are inserted into prostate gland.