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Proton Beam Therapy Experience - what was your take?
I am meeting with a radiation oncologist to discuss Proton Beam Therapy Experience from those that have had it both short term and long term.
I see lots of comments on RP as well as traditional Photon (External Beam Radiation) but not as many for those who did proton.
I’m 58 newly diagnosed Gleason 7 stage 2 waiting on Decipher, doing PETscan, doing genetic test and have discussed the radical prostate removal with my urologist. So far everything seems contained to prostate. PETscan and Decifer will tell more. I will ask about calibration as well.
So on this journey a lot of info and terms and good, the bad and ugly are thrown at you. I value all that have posted their experience. And yes each person is different, the main focus is different and the decision matrix is different.
So. Please let me know. Thank you.
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HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
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@bdouglas67 On the other hand, given the risk of recurrence, listening to others here keeps me informed on what treatment options might be next.
I get to read what other doctors are recommending for salvage treatment so that if (heaven forbid) I have a recurrence, I’ll be able to have informed discussions with my medical team at their level.
In the meantime, my 13-1/2 year prostate cancer journey may benefit others.
@bdouglas67
Hi,
thanks for your input...still trying to decide on treatment. GL 7 3+4, decip .80. 4of 14 cores positive.
thinking about proton vs. photon. does the New eng. J. of Med. article talk about 'proton vs photon' , OR the 'lack of follow-up from proton users' ???? i've been to 6 different centers of excellence and nobody really talks about proton. they say the data shows similar results. ??
@bdouglas67
I responded to your post but do not see it. I had proton radiation can wanted to share my experience with it.
You will see a higher percantage of MCC posters having photon not proton. Photon has been around a lot longer, many more institutions that have it versus proton. Some insurance will not cover proton as is more expensive and much more expensive to built and treat you.
I mentioned in my previous post that is not visible to me now about UFHPTI. It is a proton radiation treatment facility in Jacksonville Florida. They have been doing proton radiation treatments for over 20 years. They have the latest most modern equipment with 5 individual gantries and treat patients from every state and I think they mentioned about 125 different countries.
They offer a FREE complete information packet on proton and photon radiation. Their research, research from other medical institutions, their program, and includes two books (one is the Walsh book on surving PC). There is no pressure to come there and will ship their information packet to you free. Regardless of whether choosing proton or photon and or you going to UFHPTI that information packet contains tons of information to help you know the difference and make informed decisions from medical experts.
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1 Reaction@jc76 thank you. Will reach out to them. Stay healthy.
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1 ReactionI too was gleason 7 (3+4) grade 2. Did the space oar gel.
I opted for proton therapy at Hampton proton cancer institute...44 treatments.
It was an outstanding place to go for treatment. I am a little over a year from my last treatment...I did not have ADT.
My psa has dropped to very low normal range. Going every 6 months now for monitoring.
No other long term issues.
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7 ReactionsThere are several discussions about proton beam therapy. Using "proton" in the group search to see all proton beam therapy-related discussions:
https://connect.mayoclinic.org/group/prostate-cancer/
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2 Reactions@robertov
hi are you saying you would recommend brachy instead of proton, didn’t quite understand your last sentence… and thanks
Yes. HDR Brachytherapy fit the bill for me.
I wanted a treatment that would attack the cancer without extending beyond the prostate. Proton therapy seemed like it fit the bill and it did. I will update the forum when I have my first post-radiation review this month.
I had thought HDR Brachytherapy also fit the bill. But I heard that that it wasn’t done much and none of my doctors mentioned it. But later in following up, I came to the conclusion that it might be a better choice. It covers the entire prostate and the radiation is from the inside out. By that time I was already scheduled for Proton at Mayo and decided against delaying any further. My side effects after treatment were minor. But yes, I think I might have chosen Brachy under other circumstances.
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1 Reaction@robertov
You must have had proton radiation at Phoenix or Rochester as Mayo Jacksonville only has photon. However opening new cancer center in 2026 that will have proton radiation treatment.
On your proton radiation did you have pencil beam or scatter beam? I had 30 rounds of proton pencil beam at UFHPTI in 2023. My PSA was 3.75 prior to treatments and is now .12
@bdouglas67
Not sure I got back to you but here is information on getting the UFHPTI information packet
___________________________________________________________
Thank you so much for continuing to promote UF Health Proton Therapy Institute on Mayo Community Connect. We truly appreciate your ongoing support and advocacy. Your experience and willingness to share it make a meaningful difference for others exploring their treatment options.
For anyone interested in receiving our information packet, they are welcome to email me directly (chayden@floridaproton.org) and I’ll be happy to send it to them. They can also submit an inquiry through the “Contact Us” link on our website (https://www.floridaproton.org/about-us/contact-us), and our team will follow up promptly.
Thank you again for being such a strong ambassador for UFHPTI, and for helping connect others with our resources. Please feel free to continue forwarding anyone my way.
Sincerely,
Courtney Hayden
Patient Intake Coordinator