Proton Therapy: any long term side effects? Any regrets?

Posted by oskarpr @oskarpr, Jun 13, 2024

Anyone who have proton treatment for prostate cancer wanna share his experience?
Any long term side effects.
Any regrets?

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Profile picture for jbonsoe @jbonsoe

I went to Mayo's, Rochester. They recommended 5 Proton treatments. Being over 70 years of age, surgery was not an option. In preparation for the 5 Proton treatments, I received Space Oar and 2 tattoo markers smaller than the head of a pin. The oncologist told me ahead of time that I would not need to be lightly sedated for the procedure unless I wanted to. When the tech was ready to begin the Space Oar placement, he highly recommended that I go along with sedation. I am very happy that I decided to do that. Before being put in la la land I was told they would be taping my penis and testicles to my abdomen to keep them out of the way of injecting the Space Oar. Due to the light anesthesia, I was never aware of what was happening. I could hear the voices of the other 3 people in the room, but not hear what they were saying, thus being spared the additional embarrassment from having the procedure along with comments. The 5 Proton treatments were completed Nov. 2023. So far, have not had any permanent ill side effects. I did experience dry orgasms but only for about 1 month. I also had slight problems with urinating, but 3 weeks of Flo Max took care of that. There has been no bleeding or any other problems that I know of. Subsequent blood tests every 6 months have revealed cancer to be undectable. I have never had to get up in the night to urinate. The 5 Proton treatments were completed in less than 2 weeks which was a huge plus since I live 400 miles away. Mayo's and American Cancer Society need to be commended for providing free lodging while undergoing treatments or Chemo.

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@jbonsoe Are you saying that you now have regular, non-dry orgasms?

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Profile picture for dderiso @dderiso

@neilmartin Yes, I would really appreciate the data that you are referring to. Thank you!

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@neil martin @dderiso Hi guys , I’d also greatly appreciate this specific data please ! Thanks !
re proton & spacers if you would like to review it, it is quite illuminating. California proton speaks to it as well, late bleeding / proctitis are no fun. If you would like the study I can forward.’ I
I haven’t posted before , but hopefully I’ll find where response is …. Thx

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Profile picture for joerogue @joerogue

@neil martin @dderiso Hi guys , I’d also greatly appreciate this specific data please ! Thanks !
re proton & spacers if you would like to review it, it is quite illuminating. California proton speaks to it as well, late bleeding / proctitis are no fun. If you would like the study I can forward.’ I
I haven’t posted before , but hopefully I’ll find where response is …. Thx

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@joerogue, see the post from @neilmartin here that includes a link to the research: https://connect.mayoclinic.org/comment/1496269/

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Here is a link to a 2024 press release regarding the outcome of the PARTIQoL trial, a phase III clinical trial comparing IMRT and proton for men with low- and intermediate-risk prostate cancer. It found that IMRT and proton achieved equally high rates of tumor control with no differences in patient-reported quality of life. https://www.astro.org/news-and-publications/news-and-media-center/news-releases/2024/astro24efstathiou

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