Experiences with Mayo Proton, the Hitachi IMPT system, side effects?

I honestly know nothing of MRIdian Viewray. I can tell you the Mayo TP biopsy is very thorough, it found things on me the MRI didn't even show. But also it is pretty aggressive so you might bleed more than the transrectal ones I had in past. It is also super expensive so be sure to have good insurance going into it, if you need a TP biopsy that is. I need treatment at this point. I will turn down any ADT offered for sure.

I don't have the privlage to live in Phoenix or Rochester and Mayo Jacksonville does not offer proton radiation for prostrate cancer or any other cancer as well. I chose UFPTI and had 30 rounds of radiation with proton radiation. I was told same things as above that prostrate cancer cells can't repaid themselves like regular cells and that is how the radiation cures the cancer as they can't repair and replace themselves.

Anyone given an option for a biopsy done tranperenial or rectum asked for transperenial. The rectum one comes with 2% chance of infection and 2 days in hospital if you get it. Transperenial is almost 0% with 1 out of 500 getting and infection. I had my MRI and biopsies done at Mayo as well as Decipher test. If you were not offered the Decipher test asked for it. It will look more closely at you cancer cells and give you a more accurate indication of type and level of cancer. Mine was under the biopsy as intermediate and with Decipher was lowered to low risk.

I see mention of the ballon. You should have been offered the Space/Oar which is an implant which does same thing as ballon. Some have both Space/Oar and and ballon done.

I don't see any mentions of drinking water prior to treatments. I was asked to drink 16 oz of water prior to each treatment. This was to lift my bladder away from prostrate. The amount you drink and time factor before is done at simulation. The simulation is where the prostrate markers, bladder, rectum, prostrate is measured and a bed made to ensure you are in right spot each time. Then an xray prior to treatment to ensure markers are correct and you are in proper spot.

I did get the tan/sun burn looking spots on both sides of hips. Does not hurt but noticeable. I did not have an enlarged prostrate can't comment on that. I do wish I lived at Phoenix and/or Rochester as would have chose the 5 high dose proton treatments if was available to me with my time and group.

I would recommend all have the Pet Scan, bone scan, and the Decipher test. Having knowledge if cancer is outside of prostrate (pet scan/bone scan) or just inside (mine) was a great anxiety relief. I have PTSD anxiety/panic disorder. The Decipher test was a relief also but did not change my therapy.

I will praise Mayo again for having such a great forum to hear from others.

Do you think you could provide a paragraph or whatever on MRIdian Viewray? Much appreciated if you can. I have to keep all options open, especially if my upcoming PSMA shows something that eliminates other options.

MRIdian is the world’s first radiation therapy system to integrate a diagnostic-quality MRI with an advanced linear accelerator and the only system with MR-guided, real-time, 3D, multiplanar soft tissue tracking and automated beam control.

Do a Google search for Amar Kishan, MD., Associate Professor and Chief of the Genitourinary Oncology Service at UCLA as he has done clinical research on MRIdian View Ray SBRT therapy and several informative videos.

The link below is to the MRIdian View Ray website which has much more info, videos, locations, etc.
https://viewray.com/mridian/discover-mridian/

You can also find out more thoughts in another helpful thread on this site by following the below link:
https://connect.mayoclinic.org/discussion/mridian-viewray-experience/

I am not a doctor and I am not giving medical advice but I am continuing my research to learn more. I really think MRIdian View Ray will be the best option with the least side effects for me. My goal now is to find the most prostate experienced MRIdian team with the best outcomes. I welcome additional comments.

Bjroc: Dr Himanshu Nagar in NY city Weill Cornell NY Presbyterian has a good deal of experience with MRIdian viewray and prostates.

MRIdian viewray uses small margins of 2mm vs 4-6 for other types of radiation and so less healthy tissue is impacted. It also uses real time mapping adjustments, when needed.

I had spaceOAR inserted via tranperenial and I had an awful infection. Not sure if the gel was contaminated but I was given an antibiotic prior to the procedure but NOT AFTER it. I questioned that but doctor told me it was not necessary. As a result of the infection in my rectum, an ulcer materialized and my proton treatments at Sibley in Washington, DC were cancelled. After the infection I was told that spaceOAR should not be given again and a balloon was not necessary. After hearing that I said goodbye and went on active surveilance as Decipher came in as low risk (whatever that infers). My gleason is 3+4 or 3+3 depending upon who looks at it (another thing that bothers me as it impacts treatment options). The more I research the more scared I get of trusting anyone. But that's just me.

Thanks all, anyone else choose between Tulsa Pro and Proton? Right now that is my choice, but my upcoming PSMA scan could change things to third or other options.

My 3 months after radiation showed my PSA was undetectable. So, it seems the 5-radiation treatment works well even on very large prostates and still no side effects or trouble urinating. All is well except for the heat here in Phoenix but that is why I live here for the good nine months of beautiful weather and baseball almost all year long.