Starting Proton Treatments for Prostate Cancer: Any experiences?

How are you now, @gankster ? I had SBRT photon + Orgovyx April 9-21 this year, and my experience isn't bad compared to yours (proton only treatment). But "still under observation" -- someone else started experiencing hot flashes after two months on Orgovyx, so I am on "wait & see." I am wondering if "proton only" (no ADT) absolutely worked for you. My oncologist we'll see if I can stop Orgovyx after 8 or 12 months; I prefer sooner, maybe 6?

@desertrat
Similar Gleason Score and PSA. Mine was 3+4=& and my PSA was 3.75 at time of treatments.

I had 30 rounds of proton radiation done at UFHPTI.

Has your urologist or R/O mentioned Decipher test? Have they mentioned PSMA? The Decipher will define your risk level more accurately of your prostate cancer. PSMA will help define if cancer has spread outside prostate. All of these test are comvered by Medicare if you are on it.

I did not have hormone treatments either. It was originally part of my treatment plan but my Mayo R/O suggested Decipher test and it came back low risk versus original from Gleason as intermediate. That changed to low risk changed my treatment plan from radiation and hormone to radiation only.

Mayo Jacksonville could only offer photon radiation so got second opinion at UFHPTI which does proton. Elected to get 30 rounds of proton radiation versus photon to do what every possible to limit collateral radiation damage to other tissues and organs.

My R/O at UFHPTI was outstanding and I was given so much information about prostate cancer, what my treatments would be, side affects, pros and cons, that I was totally informed about what was going to happen and what to expect prior, during and after treatments.

I had 20 treatments 5 years ago. Grateful that I have been cancer free ever since. Some bleeding issues at first but then those issues were resolved.
Very grateful and pleased with the care received by Mayo!
Best of luck and God bless you!

It's over 6 years since my proton treatment and 5 years since Lupron treatment ended. My symptoms have been gone for over 3 years. I'm part of a study at Oregon Heath System University with a group of men who all had ADT. It's an exercise and diet program to help recover physical strength and reduce gain from the ADT side effects. Some men are on long term ADT because of metastasis. I've lost a total of 20 pounds since I had ADT and some have lost more than that. The exercise has improved my activity. We are all in our 70s and 80s and they adjust the rigor to our ability. A program like this is very valuable for anyone who's been through prostrate cancer treatment that can change our bodies.

Glad you are doing well.

I’m considering treatment at UFHPTI. How was your experience there and may I ask who was your RO?

@buzzliteyear
Feel free to private message me is you like.
If you are considering UFHPTI I suggest you get them to mail you their information packet. It will give you a ton of research, two books (one is Walsh) their program, and much more. It is excellent.

My R/O was Dr. Mendenhall. Anohter poster also went to UFHPTI (Meriwether) and we wrote back and forth as we had the same R/O and treatment team. Dr. Mendenall has been there for decades and has done thousands of prostate proton cancer treatments.

The facility is ultra modern. It is on the same ground as Shands hospital but is NOT part of Shands. The consultations are very in depth and thorough. Every question you can think of will be answered including some you don't answer as they are so expereience they know what questions will come up.

The waiting room ( with receptionist) is expansive and modern. You will get an I.D. electronic badge. Each time you come in you scan your badge at reception desk. This scan goes to your treatment team to let them know you are there. If you are drinking water prior to treatments they come out and give you a start time. Your appoints are reserved time for you.

There is a huge bell coming down from ceiling right above their piano that you ring when you finish your treatments. They have a free lunch once a week, yoga, coffee, water, etc. There are additional offices on second floor but exam and treatment rooms are on bottom floor.

They have 5 proton gantries and treatment rooms. Each has it's own changing rooms and each has it's own bathroom. The proton equipment went through a complete upgrade to latest proton equipment. Everything will be explained to you both verbally and handed to you to read. Your intenary and times will printed out and handed to you.

Now I am a patient at Mayo Jacksonville since 2006. My original diagnosis was at Mayo including my original treatment plan. My PCP suggested a second opinion from UFHPTI. I was very impressed with the professionalism and courtesy of all there. I would have had my proton radiation at Mayo but they only could offer photon as their new cancer center with proton radiation will not open until 2026.

They will try to accomadate the time you want to come in. You will have the same treatment team each time. They get to know you and vice versa. I had the Blue Team. I got so friendly with them at end would say after they hand me my time to report as okay "same bat time, same bat gantry, same bat team." All of them gave me hugs at the end and went out into lobby to cheer me at my finish with treatments.

@meriwether went there also. Had same R/O, same treatment team. And his is also finsihed with successful treatments.

Thanks for asking, @vircet. Coming up on my 4 year mark since completing my Proton only treatment and I'm still doing/feeling great (no complications or side effects). My last PSA was 0.4 (new nadir) so I have to say that Proton-only absolutely worked in my situation.

@gankster
And my hug is a happy hug for your success. I too had proton radiation only.

Regarding proton radiation treatments for prostate cancer.
I have been a patient at Mayo Jacksonville for 20 years. I have the utmost respect for the care I have received there and would recommend Mayo Jacksonville to anyone wanting to go to a specialty hospital and/or clinic.

Mayo Jacksonville is building a brand-new cancer center that will open in 2026. I was diagnosed with prostate cancer in 2023. After 3 consultations and 3 opinions I chose to go with proton radiation. Since Mayo Clinic did not offer proton only photon (although their SBRT photon treatments are excellent) I chose to go to UFHPTI. I mentioned that treatment center all the time. They have patients from all over the world, and the U.S., coming there. They began treatments in 2006 and have the latest proton treatment equipment. I have posted contact information below. Even if you do not choose to go there, ask for their free information hand out. It is mentioned in the intake coordinators message below. Packet has great information on prostate cancer, research, their program, and two (one is Walsh book) prostate cancer books.
___________________________________________________________________________________________________
Patients that are interested in scheduling a consultation with one of our physicians can call our Patient Intake Department directly by dialing 1-866-934-6340. They can also submit an inquiry online by visiting https://www.floridaproton.org/about-us/contact-us. Either way they contact us, a member of our Patient Intake Department will be happy to provide them with an information packet and assist them with the application process.

Again, thank you for your continued support of the UF Health Proton Therapy Institute. We hope to provide them with the same great care that you received!
Sincerely,
Courtney Hayden
Patient Intake Coordinator
Courtney Hayden | Patient Intake Coordinator
Patient Intake Services | UF Health Proton Therapy Institute
2015 North Jefferson Street | Jacksonville, Florida | 32206
Phone and Fax: (904) 588-1416 | Web: http://www.floridaproton.org
My office hours are Monday through Friday from 9:30 AM to 11:30 AM and 3:30 PM to 5:30 PM.
Learn more about proton therapy here: "How Proton Therapy Works"

I am happy for you @gankster and @jc76 . Perhaps, well to do Canadians who won't settle for second best do get proton treatment in the United States, or other countries where the treatment is available. I had SBRT photon in one of the top cancer centers in Canada. I did have some mucus and blood in my stool for a few days post-treatments. Other than that, I haven't experienced the side effects that I have been reading about, experienced by some (many) in this support group who each had their respective "second best" treatment (different between patients). I wish everyone the best, whatever treatment you had.