Which centers offer 5 fractionated Proton Therapy for Prostate cancer?

My SpaceOar was done by Dr. Frendle at Mayo Phoenix and he was the same doctor who did my 30 core transperineal fusion guided biopsy. The only complaint was he insisted that I be knocked out for the gel and the marker insertion. He didn't want me moving even though I never flinched doing the biopsy.

Thanks for the link. If I wasn't looking for it every day I would never even know I had blood as there is none on the toilet paper. Like I said it is nothing compared to the pints I donated all the time.

I can't remember the docs name, but I have to send an email to Mayo to reschedule my PSA test so I can ask. I was talking to him during the procedure, and he told me he does 6-8 per week so he might be the only doc that does them. He said a few months prior to my visit they weren't filling all the appointments, but now patients had to wait over two months. This was in February, 2022. It's a delicate and complicated process, but once he was done, I had no complications or side effects and never felt it.

I'll post his name once I find out.

rcctiger, thank you for your reply and for looking into who did your SpaceOar. I appreciate your help. Take care.

Gently,
My history: I am 73 now. I had fusion guided biopsy at Mayo Rochester 11/2019. Gleason scores 4+3. I considered focal ablation at MayoRochester but didn’t like the recurrence numbers. I opted into Proton treatment. I, too, thought Scottsdale might be more fun than Rochester. I was given the number of the radiation oncologist at Mayo Rochester. When I called Mayo Scottsdale they wanted to have a :45 consult before scheduling me for PBT. I was not too excited about another delay. I think by my call to the radiation oncologist in Rochester may have bypassed that process at Mayo Rochester. I already had been told that I was eligible for the 5 treatment PBT protocol at Rochester. I did not know (and didn’t think to ask) that MScottsdale was using the 5dy/week/5week protocol. They have since changed to the 5 treatments/2 weeks protocol.
I got scheduled at Rochester for late January 2020. The first week I had the insertion of the two markers (carbon or steel?) and the spaceOar. I was given the SpaceOar by a woman doctor who I think was an anesthesiologist (not sure on that) I was not bothered by the doc being a woman;I’ve gotten too old or blasé about showing my body to medical professionals. It was just a little odd when the male ‘aide’ taped my penis and scrotum out of the way. I had no problems with the spaceOar insertion or afterwards. There was also a process to create a ‘mold’ into which my lower legs were positioned for each treatment.
It takes some time to program the PB equipment and so they were suggesting beginning my treatments on the following week’s Friday. I asked for and was given permission to push my first treatment off to the following Monday; I then went to Arizona (coincidentally) for some fun. I returned to Rochester and got my my treatments. Each treatment was preceded by an enema. That was done in an adjacent part of the hospital. It was not a big deal. I then preceded to the Proton Beam treatment area. Some time is spent in positioning. I believe they have five treatment rooms and the cyclotron can only deliver to one room at a time. so a time or two I was on the table ready and had to wait for them to “get the beam” They would announce to me that they had the beam (imagine a Star Trek scenario us where Scotty announces to Captain Kirk “Aye, Captain, we’ve got the beam now..”)
I commonly sum up the treatment experience by saying that I spent more time taking my clothes off and putting them back on then I did in treatment.
I had some minor urethra irritation after treatment number 2 and went on flowmax. It helped and I still use flowmax.

I finished the treatments mid February 2020 and went home. Shortly after things shut down for Covid. I was lucky.

I was encouraged to take a four month course of Lupron. I had some emotional lows with Lupron bad its hard to separate those from the emotional challenges of the pandemic.
Something that was not (to my recollection) put in front of me was the need to have a strengthening regime while on ADT (there are some good video’s on the Prostate Cancer Research institute website (YouTube and pcri.org) I do think I lost some muscle mass and gained some belly fat.

Some months after treatment my PSA numbers dropped to .10 and are holding steady there.

A couple thoughts: It may also be useful (and difficult) to find out the cost of treatment. I am on Medicare and an excellent supplement policy. My treatment at Mayo had very little out of pocket cost to me. Annecdotal information back in 2019 California Proton (a private facility) was using the ~5 treatments/week for 5 week protocol. They were also charging $25,000. Mayo has some very very deep pocket donors which may mean that cost to patients are more moderated.

It’s also difficult, I think, to determine the method of delivery of treatment of different treatment centers. You used the word “fractionated” and I would have said “pencil beam”. I’m not sure if the two are synonymous or different. I would also say that its hard to find much in the way of long term studies about efficacy of one treatment method vs the other - and that has a lot to do with PCa treament methods evolving rapidly.

If you are ‘just’ entering into the Mayo system, they may want an initial appointment before scheduling treatment (not sure if that can be done virtually). That is their normal approach. That might mean two trips, one for the “howdy” and one for treatment.

I found Rochester to be a welcoming community. You can get a library card for a modest amount/week. They have a great food coop close to the library. There are tunnels connecting Mayo buildings and other commercial buildings. You can use these to get around ( a bit convoluted). Lots of good restaurants within walking distance of Mayo and the hotels.
Lodging: On my initial visit we stayed at the Kahler Grand (directly across the street from the Mayo Gonda building. They were undergoing a major remodel; not sure what those rooms are like. On my return (and last year for a visit to Mayo for other reasons) I stayed at the Kahler Inn and Suites. Their rooms have a bit more kitchen, a table for eating, and a love seat for watching TV. In 2020 they also had an included nice breakfast buffet. In 2022 that was not an option and the hotel was not very full and their in house bigger restaurant was closed.
FWIW: On my initial trip to Mayo Rochester I flew into Rochester. All of my subsequent trips have been to the MSP (Minneapolis Saint Paul) airport. There were two reliable transport services to and from Rochester to MSP.

Feel free to ask more questions. I have benefited greatly from knowledge shared here and elsewhere.

Dr. Brendon McMenomy at Mayo Rochester performed my Space Oar procedure. A+++

I asked him about halfway through the procedure if he ever thought about doing a less stressful job like being an optometrist. He just laughed, but when I completed my treatment I sent him a thank you card and told him God put him exactly where he needed to be.

For me, I was the most apprehensive about insertion of the Space Oar and Dr. McMenomy was just awesome.

Good luck!

Trying to find a place that warm for proton 5 treatment plan. First in my mind is Phoenix Mayo. Many on MCC have gone there. Mayo Jacksonville does not offer proton radiation treatments and Rochester would not be warm.

UFPTI (University of Florida Proton Therapy Institute) does offer proton radiation treatments and has been doing them sine 2006. I am not sure about 5 treatment plans but you can always contact them.

There are places in California and Florida as well as elsewhere that do have proton and are warmer climates.

The Space/Oar removes the need to do a balloon prior to each treatment. I had my done at UFPTI at same time they did markers.

I could feel the Space/Oar but was no pain and slowly the feeling went away after about a month after treatments. I had mine done transpernial and was not an issue at all. I was given a mild sedative and laughing gas. The laughing gas was self administered and you used it as needed. At first my apprehension was high but then realized was not going to be a big deal and stop using it.