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

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.

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

@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

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

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

You asked so here goes. I had 28 treatments of photon radiation for prostate cancer that was localized and a PSA of 22 when I started. 6 months later the side effects started getting worse. Frequent urination/very weird symptoms that mimicked more serious issues/3+ bowel movements a day/gas when I go to the bathroom every time/stomach discomfort on and off all day/feeling light headed all the time/weird itching all over my body. So I went in for tests over the next 4 months. Blood tests for every organ liver, kidneys, pancreas/EKG/Electro-Cardiogram/CT Scan all negative for serious issues. Now I am 13 months from last treatment. I do stay hydrated so I documented how many times a day I go to the bathroom. Average is 10 times a day with still 3+ bowel movements and gas all the time. I never know what is going to come out. After doing research I have diagnosed myself as having severe "Radiation Cystitis & Radiation Fibrosis". The oncologist I had fried me good. It seems I got higher doses than needed of radiation which has contributed to the severity of my after effects. My CT Scan also showed my bladder being affected and I quote "a distended bladder with mild wall thickening is a common finding following radiation treatment for prostate cancer". So, am I happy about what I did ? Yes and No. The good news is my PSA has dropped faster than expected so hopefully the cancer is gone. I opted for no hormone treatment, only radiation. I probably should have gotten the surgery if I knew I would feel like this everyday but too late now. I am in my 70's which is why I opted for radiation as I didn't want to be unable to have sex after surgery or have to wear a diaper or pee pad. It's hard enough now at my age for the sex thing lol... Kind of a man thing I guess. Anyway, that's my story. I just hope these symptoms don't get worse or kill me as they really suck as it is. My research says they could get worse so fingers crossed they don't. Good Luck to you and all that have to deal with this. All the Best.

@suzdog Sorry to hear things did not go well, are you able to share where you were treated? I had some problems early on , actually more than early on, maybe 8-10 months. Similar to what you describe, now it has eased quite a bit, at 14 months. Hope yours does too.

@neilmartin I said some negative things about my experience so to call that out is not a good idea on this forum so I have to pass on disclosing my treatment location. People are sue happy and I can't prove anything I assumed from my research. Radiation treatment has a million if/ands & buts to it. I also don't want to seem ungrateful as getting rid of the cancer is task #1 and that's what they did hopefully. Maybe I am just one in a million whose body reacts really bad to the treatment that was noted in places I found information from. I don't want the cancer to re-occur which happens in 20 - 30% of people with prostate radiation treatment so I look at the bright side of my PSA taking a nose dive hoping it's all dead. You are the first person that has said you had similar bad after effects like mine that I have seen on here. Most have the common problems for a few weeks or months and that's it. Glad to hear that your symptoms have improved. I hope mine gets better too. All the Best to you and yours.