Starting Proton Treatments for Prostate Cancer: Any experiences?

Posted by desertrat @desertrat, Feb 5, 2022

I am 69, just been diagnosed with prostate cancer, Gleason score of 3 + 4, PSA is 4.2. I have opted to do 28 treatments of proton radiation only. I would appreciate hearing from others who have been through this and how it worked out for you. Thanks in advance!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

jrhamp | @jrhamp | Oct 20 9:28am

Proton radiation therapy 2010 at Loma Linda Hospital..2.5 months of every weekday morning. PSA: 6.1 low growth prostate cancer caught early. Gleason 3+3 Note the procedure has changed in the last few years in that treatment is much shorter and equally successful. Absolutely no adverse effects post radiation..none!

Post radiation for about 5 years remained zero to .2. Note PSA tests can vary. That said, my PSA has increased in the last 14 years now at 2.5. The question: Has cancer returned? Possibly, but not absolute, therefore, I intend to watch any further elevation in the future with tests every six months. There is a scanning procedure, but with such a low PSA, told any scan options would not be conclusive either way.

In short, I would highly recommend proton radiation therapy and have for many years. Location, expense and other facts enter into the decision matrix, but do give this procedure some serious thought. RH/Florida

ramsa006 | @ramsa006 | Oct 14 9:45am

2020; age 75, PC localized to 1 lobe, score 3+4. I wasn’t a good candidate for surgery due to previous brain stem bleed that left a neurogenic bladder requiring self catheterization. Surgeon indicated i would very likely be incontinent post op. Statistics with Proton radiation excellent and underwent 5 sessions early 2021 without difficulty. Cancer seems to have responded and PSA< .2. No side effects until Oct 2021 when noted urgency and blood due to radiation cystitis. This progressed so had 60 sessions HBO June-Aug 2021. Discomfort and urgency improved but bleeding restarted and progressed until couldn’t drain bladder due to clots in March 2023. Admitted to St Elsewhere for 10d, transferred to St Mary’s Mayo for another 6 days, 2 more transfusions(total of 4) and a second cystoscopy with Alum that finally stopped bleeding. Miserable illness that took months to recover from. Had another 20 sessions of HBO. Currently, note flecks of blood maybe every 10 days, no discomfort. Scheduled for cystoscopy next month and hoping will see marked regression of the vascular abnormalities associated with radiation damage. Long story that isn’t over. Still, no evidence of active cancer, so i go with that! Good luck with your journey…

Colleen Young, Connect Director | @colleenyoung | Oct 10 2:58pm

In reply to @revjohnson "Do you have an email address??? If so post it here. Thank you." + (show)

Hi @revjohnson and @popkovas, Mayo Clinic Connect is a public forum and it is not recommended to post a personal email address publicly. Please use the Private Message function. It is secure. Learn how in the Help Center https://connect.mayoclinic.org/help-center/

I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support.

revjohnson | @revjohnson | Oct 10 2:38pm

Do you have an email address??? If so post it here. Thank you.

popkovas | @popkovas | Oct 10 4:35am

In reply to @revjohnson "I'm an individual but I'd be happy to talk with you. Email me and I will..." + (show)

Thank you so much!
But I cannot find how to send e-mail here

revjohnson | @revjohnson | Oct 8 7:23pm

In reply to @popkovas "Hello! Is there any support groups where we can have a call with patient who has..." + (show)

I'm an individual but I'd be happy to talk with you. Email me and I will send you my cell phone number. Grace and Peace, Rev. Donald Johnson

revjohnson | @revjohnson | Oct 8 7:18pm

In reply to @josgen "Interesting how you can separate the Proton treatment side effects from the Lupron side effects, especially..." + (show)

To share: I had 5 treatments with Proton Beam Therapy for prostrate neoplasm. But I suffered little to no fatigue as the result of the treatment.

lyricw | @lyricw | Oct 4 12:40pm

In reply to @dmp65 "Thanks - great information you shared. I have had 2 PSMA pet scan at the University..." + (show)

My neighbor had prostate 5/4 lesion treated with 30 something Proton treatments 7 years ago. He also received ADT & PSA still undetectable. He was treated in Knoxville, TN.

dmp65 | @dmp65 | Oct 3 9:39am

In reply to @jc76 "dmp65, Your PSA is very high. Mayo Jacksonville did not offer proton radiation because they don't..." + (show)

@jc76

dmp65, Your PSA is very high. Mayo Jacksonville did not offer proton radiation because they don't have it for my prostrate cancer. They have photon only which is the radiation therapy you refer to. Both are radiation treatments.

Major difference is that proton does NOT pass through body like photon does. It also can be targeted more precisely and releases it's radiation at the targeted area. The research and feedback (5 year studies) was that it would have less damage to surrounding organs and tissues.

But research (5 year studies) is showing both will have similar side affects. They are doing long range studies now that will give long range statistics that are not available now. The short range studies all sort of show you will have side affects with both. However the long range studies are not in yet thus the secondary cancers that radiation can cause are not available yet. UFPTI got a 25 million federal grant to study the long range side affects of proton radiation to photon.

What I chose was proton to take advantage if there was a chance of less damage to organs and tissues. Thus I did not have Mayo Jacksonville photon radiation but went to UFPTI and had proton.

Most patients will have side affects from both types. However we are all different and what one person will have another will not. I had reduced urine velocity and amount about 3 weeks in. But after treatments were over it slowly returned to normal. I had some dribbling and increased inability to hold urine when I really need to go. But this too has been improving (I finished treatments July 5th).

Where do you live? If you can go to Mayo Rochester or Phoenix Mayo they have robust and varied proton treatment plans. If you live in Florida there are several proton centers like the one I went to in Jacksonville UFPTI. It stands for University of Florida Proton Therapy Institute. They have been doing proton treatments since 2006 and have 5 gantries and treatment rooms. Really an outstanding facility. I have heard same goes for Mayo Phoenix and Mayo Rochester. Just wished Mayo Jacksonville had proton but they do not.

I am not sure who said proton was better than photon both have the same curative success rates. The better is probably the fact that proton will not go in and through body like photon does. Proton releases it's radiation as specific target area and will not pass through body. But both will have side affects. I think what I hear from MCC here is the major side affects are not from radiation but the hormone treatments. I did not have to have hormone treatments as my Decipher test showed low risk even though originally wanted to do it.

Regardless of where you go and what type I would suggest, bone scan, PSMA, and Decipher. I assume you have already had your biopsies. The tests I mentioned area going to give you a much broader picture of your cancer and if confined to prostrate or has spread. All those factors will affect the type treatment you have.

I will say like I have always said here we are NOT doctors, radiologist, oncologist, urologist. Thus medical advise should come from those that are. Also know we are all different and what is best for one is not best for you. Also mentally physically we are all different and what we can tolerate both physically and mentally.

Do some research from major providers like Mayo, Cleveland Clinic, John Hopkins, Prostrate Cancer Center, American Cancer Society, etc. There are also many other sources others can provide you with. Then get several at least two consultations and opinions. Then you enter your treatment an informed patient.

Good Luck!. I think I posted months ago that the highest stress level in your prostrate cancer journey is deciding on what treatment to have knowing you have active cancer in your body.

Good luck!!!!

Jump to this post

Thanks – great information you shared. I have had 2 PSMA pet scan at the University of Seattle and so far the cancer is still in my prostrate. Your last paragraph is where I am at – deciding where to get PC treatment (Seattle- proton Or Kalispell, Montana photon) many variables- but have to decide this week- thanks again
Don P

dmp65 | @dmp65 | Oct 3 9:21am

In reply to @mikewo "Treatments at Mayo Phoenix are Monday, Wednesday, Friday, Monday, and Wednesday. My oncologist wanted 28 treatments..." + (show)

Thanks – appreciate your input- it sure would be nice if I could get done in only 5 treatments. I am looking at Seattle for my proton therapy – they may have it. Thanks again