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.

@dmp65

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

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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.

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@josgen

Interesting how you can separate the Proton treatment side effects from the Lupron side effects, especially the fatigue.

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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.

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@popkovas

Hello!
Is there any support groups where we can have a call with patient who has undergone proton therapy? Struggling to discus this with someone who has this experience, for my relative. Or maybe someone here can do that?
Thanks in advance

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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

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@revjohnson

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

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

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

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@revjohnson

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

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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.

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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…

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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

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@bobvan

PSA of 4.2 with Gleason of 7 (4+3) at age 78. 40 proton radiation treatments at Mayo AZ in 2020. No side effects from proton. 18 months of Lupron shots with hot flashes, fatigue, and impotence. I exercise regularly, eat vegetarian, and live with the Lupron side effects which increase likelihood of spiking the cancer by 8-10% from mid-80th percentile to mid-90th percentile. Good luck.

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I thought the Lupron was given to decrease the chance of prostate cancer recurring. Am I missing something?

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@llsteve

I thought the Lupron was given to decrease the chance of prostate cancer recurring. Am I missing something?

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@llsteve, Lupron is a type of hormone therapy for prostate cancer that works by lowering the amount of testosterone in a person’s body, which helps slow the growth of cancer cells.

Are you taking Lupron?

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