Starting Proton Treatments for Prostate Cancer: Any experiences?

I just received notice from my insurance company I have ben denied approval for Lupron Depot. I have not received any discussion from any Doctor to start on it. Has anyone heard of their Doctor ordering this kind of medication with out discussion?
Conrad Evans

do 40 then get on zolodex radiate the margins with rapid arch

stay on zolodex pc comes back in bones or ? 5 years

Have received 3 of 5 Proton Beam treatments at Mayo Clinic Rochester. Each is proceeded by enema, emptying your bladder and then drinking 1/2 liter water 1 hour prior to procedure. This helps to keep the bladder out of the way of the Proton Beam.

Once on the table for treatment you are carefully positioned using the tattoos on torso which were created during second visit pretreatment visit. An X-Raay is taken to make certain the prostate gland is properly positioned. Next you wait for the Beam to available for your room. There are 4 treatment rooms that share "The Beam". The technicians will let you know when "We have the Beam". Next you hear a ticking sound which may be the technicians "painting" your prostate with protons. Lasts for maybe a minute or two. Next your table is turned 180 degrees and the procedure is repeated. That's it. No pain, no discomfort and from the data I have seen so far, very good results.

For tech-heads, the equipment is from Hitachi.
https://www.hitachi.com/businesses/healthcare/products-support/pbt/
Siemens also makes a competitive product under their Varian name.
https://www.varian.com/products/proton-therapy
Best wishes to all.

I am 75 y/o and had an elevated PSA two years ago, a 5.7 in February 2021. One year later in March 2022 it was 7.7. At that point I decided to have a prostate MRI which indicated a PIRADS 4 with two discernible lesions. I then had a biopsy with 20 needle sites. That was May 31, 2022 and I began Lupron injection on June 19, 2022 prior to beginning my Proton beam treatments on Sept. 08, 2022. Six weeks after 39 sessions of Proton beam therapy and six months of Lupron therapy my PSA was 0.04. I received my second six month duration Lupron injection in December 2022 and will receive the third and last one six months later. This will complete the hormone suppression therapy of 18 months duration. I had a Gleason score of 4+4 in two samples and 3+4 in two other samples and a score of 4+3 in one sample. My Dicipher score showed that I was in the low risk group for recurrence but my radiation oncologist and my urology oncologist both stated that studies have shown that the high risk group I fall into based on the biopsy indicate 18 months of hormone suppression therapy beginning two months before Proton beam therapy began is the course to follow for the lowest chance of recurrence of the cancer. The greatest side effect I am experiencing with the Lupron therapy is weight gain and the hot flashes.
I did read that after the radiation treatment is completed one will see a PSA that may fluctuate in the lower ranges for maybe up to 18 months and then it will settle down to the low number for your baseline. I don't recall if that is for someone undergoing radiation with or without the hormone suppression. My guess is it would be without the suppression because the Lupron is so effective in bringing the PSA to a very low level. Ten weeks after starting Lupron and before radiation my PSA went from a 7.7 to a 0.2 !

Wow, only 5 treatments over 2-weeks? I am looking into Proton as a potential prostate cancer treatment, but we've been told it's 28-39 treatments over 6-8 weeks. I'd like to know the details of your treatment plan if you'd share them...?
Thank you!

dandl48 Dave, one of the centers here in Florida suggested SBRT over 5-days, with three other days for preparation. What were your Gleason scores and did you also have a Decipher score?
We've had a concern about such high doses of radiation over such a short course of time so this is of interest.
I have not heard of SBRT Proton, I just noted that in your comment. I've been told that SBRT is Photon, perhaps I am, missing something...?

I had a Gleason score of 4+3 (nor sure of decipher score). PSA 8.3 (on finasteride so probably should have been thought of as 2X8.3) mpMRI showed anterior tumor.
I was approved for 5 treatment sessions of PBT at Mayo Rochester. Not all proton treatment centers have the same tech, so some are using ‘older’ protocol of five treatments per week/five weeks. Early 2020 treatment with 4 months of ADT. My PSA scores are holding at less than .10
Hope that helps

@michael219 Michael My Gleason score was 4+3, like Jim with a PSA of 11+(I was off finasteride for a month or so). Don't know the Decipher score. I believe that both Photon and Proton can be used in SBRT. My current PSA's since the SBRT via Proton has been <.01 with my next blood draw in April.

I believe dandl48 is correct, SBRT is used for both Photon and Proton Radiation. Studies have yet to prove whether Proton is safer with fewer side effects than Photon. The thought is that Protons are delivered with a finer beam and this may reduce likelihood of radiation impacting non-prostate cells. Also, protons enter the prostate but do not exit... they only have an entrance path where as photons travel through the prostate and exit on the other side.

My last of 5 Proton treatments was Thursday 1/19/23. No major issues. Two days of prep, then 5 days of treatment. With the Holidays and a mild case of Covid the entire process took a bit longer than if it were done outside the Holiday Season and without the Covid.

Cannot say enough about the great people at Mayo Rochester. This is a national treasure. Rochester is known as Med-City and it is no wonder. Thousands of Doctors and many more staff. New buildings going up on Campus. Glad I made the investment to travel to Minnesota. Oregon, where I live does not have a Proton Beam facility and it did, it would still be a wise investment to make the trip to Minnesota. Out of towners can also find free lodging during treatment if needed. My wife and rented a house south of town and enjoyed a snowy Holiday Season.

Best wishes to all.

@jb2buckwater Love seeing another Oregonian here. Yes, the city of Rochester is a Med City with the last I read that the city has a population of 110,000 with over 35,000 people working directly for Mayo.
Be well,
Dave