Are there any cases where proton beam therapy has been used when cancer has spread outside of the prostate?
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It can be used. I heard the head of one of the centers saying he had done so in prostate cancer symposium video on YouTube.
Not the norm however.
Absolutely yes. I'm 71 and watched my psa rise gradually over the past years (my Dad had PC). When my psa got to 6 in Spring of 2022 I had a standard biopsy – result was all clear nothing found. But my psa kept rising and then had a fusion biopsy in Jan 2023 which combines an MRI image with the ultrasound – results came back 3 x Gleason 8 cancers and 1 x Gleason 7. At that point I began to research my options. I liked the idea of Proton radiation because it stops at the tumor and does not continue to radiate the tissues beyond the target on the way out of the body. Went to UFHPTI for a consult and signed up. At that point I had a "nice little tidy" bit of cancer confined to the prostate. Part of the consult was a final PETSCAN to make sure there wasn't cancer elsewhere. The Doc called me3 days later and said that there were 7 spots in my lymph nodes. I'm sure that my original biopsy missed it. I asked him if he could still treat me and he said yes – that in my case Proton Radiation was even more beneficial. Turns out it is pencil beam scanning – like a 3 D printer – they can precisely target any spot they want. Day after tomorrow is my last treatment of 40 – and my PSA has gone from 11 down to 0.25. Best treatment experience ever. Strongly recommend a consult with UFHPTI. Every case is highly customized and these guys are pros – having been at it for 17 years. Best of luck with your journey. It's not one any of us wanted to take – but we have to make the best of it
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Thank you so much for sharing your experience! Very helpful to this community. Much appreciated.
I too had my treatments at UFHPTI. I had 30 rounds of pencil beam that ended July 4th. Had my first PSA recently at 3 month mark. Went from 3.75 to 1.2.
I had Dr. Mendenhall. Who did you have?
If you want Proton radiation Mayo Jacksonville does not have it. I chose UFHPTI after research, the packet they sent me, and my consultations. Mayo did my biopsies with MRI/Fusion and a bone scan. UFHPTI (Shands does them) did the PET scan which is the PSMA.
I don't think biopsies would have been done on your lymph notes were they? That is why UFHPTI had me do the PSMA to see if cancer had spread. Mine had not and thus just the prostrate with margins was treated with pencil beam.
I had the Blue Team. Which team did you have? Say hi to Mary next time you are in there. Looks like you are close to ringing that enormous chime to signal you are done. Give it a huge swing so all can hear.
My did was Curtis Bryant. I’m convinced they added years to my life. And side effects so far are really nothing. Soooooo glad I went to UFHPTI. They are top notch. I was on the Blue gantry and Taylor, Brianna, Dominique, elizabeth, and Librado gave me the best care I’ve ever received.
On my lymph nodes there was no biopsy – I was trying to say that my original prostate biopsy missed my cancer in the prostate. The later fusion biopsy did find it. And then the PETSCAN at UFHPTI revealed the cancer activity in my lymph nodes.
Tomorrow is my last day and I get to ring the chimes and head home.
Dang autocorrect. Meant my Doc is Curtis Bryant
What is UFHPTI? I am considering Radiation for my Gleason 7 Prostate.
Univ Florida Health Proton Therapy Institute in Jacksonville Florida. You can go on their website and submit a form – they will FedEx to you a book and 500 references and complete information. Highly highly recommend
Thank you! I will definitely check it out.
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