Starting Proton Treatments for Prostate Cancer: Any experiences?

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 !

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.

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

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

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

I asked my Urologist to request the testing before I met with him 3 weeks after the biopsy so that when I met with him, he could evaluate the results for me. I also requested that Decipher email me the results for my own records and to pass it on to other doctors when I wanted an opinion. The biopsy material is used for testing for the Decipher and the Prolaris test.

Thank you so much for your reply to my question. I would like to know the order in which to have the decipher test. I am scheduled to have the biopsy three days from now, and am hesitant to tell my urologist what he should be doing. I will do my homework to learn about the decipher test prior to the biopsy. Do you think that i should contact my urologist prior to the biopsy to let him know that I want the decipher test?

@billmoskowitz you might consider getting a second opinion when you meet with a radiation oncologist. Also, the decipher test makes use of your biopsy and measures the aggressiveness and suggests whether you need one type of treatment or two types. It seems to be the preferred test over the Prolaris because of its sampling size.

Dave,
SpaceOAR was injected in same procedure as the 4 carbon marker injections. Found the whole procedure to be relatively painless, without added pain killers other than the Lidocain injections. Have also not noted any added "obstructive" feeling when having a bowel movement.

So far, very happy. Will continue to report my experiences on this board in hopes that it assists others and removes concerns regarding actual process.

Cheers and Merry Christmas to all participants.

@jb2buckwater Did you not get the SPACEOAR inserted?

Hi, I am deeply grateful for your input, and now i am just waiting to hear what the biopsy will reveal. Thank you so much for your input, and i wish you well, and the best of health. Bill Moskowitz Bradenton, Florida