Meeting up with others who are having Proton Treatment

I just wanted to add my own comment on choosing proton therapy. I was not a good candidate for a radical prostatectomy as I had a TIA in 2019, so I did a lot of research on the various radiation therapies. Proton therapy seemed to hold the most promise for minimizing radiation side effects. I had my last proton treatment over a month ago and, so far, I have had no significant side effects related to the proton therapy. The only side effects worth mentioning were due to the androgen deprivation therapy and those have been minor. I am very happy that I chose proton therapy. Good luck on your treatment.

Great news on your SBRT treatment! Yes, the Androgen Deprivation shot for me was very bothersome. Sweats, Chills and easily to tire. Good luck going forward.

I'm starting next week. did you ever have any significant side effects of the therapy?

Gleason 6 Intermediate evaluating RT options. Sounds like PB SBRT is a good path forward compared to other options. Thoughts?

Hi Jim,
Glad to hear you are doing well. I'm assuming you took six month's Lupron for the hormone therapy. I also know that with that drug's side effects often don't manifest for about a month. How long has it been since you got the shot? My therapy is coming up and I'm more concerned about the Lupron than the beam therapy.

No. I had zero side effects. Best of luck!

How many proton treatments over how much time? Hw long is each therapy?. No one has mentioned this to me. only external radiation , radical prostectomy or radioatvie seed.

needsadvice (@needsadvice) I had SBRT treatment and it entailed 5 treatments over 10 days. Each treatment took no more than 5 minutes on the machine. Having the enema before treatment took longer, LOL.

Dear Needsadvice, I had 20 proton beam treatments over 4 weeks at Phoenix Mayo. While at Mayo, I met men who had a number of different treatments from 20 to 48. My radiation oncologist said that a team of doctors look at each patient and use a number of factors, including the physical condition of the patient to determine the number of treatments. I was 73 but in good physical condition. My understanding is that the fewer the number the higher the dosage. When I had my treatment they were researching the 5 treatments over 2 weeks. The 5 treatments was just as effective in radiating the cancer. The concern was the toxicity of the treatments, or potential tissue damage. I believe the research indicated that men were able to tolerate the higher dosage.
After 5 treatments, I began to have pain while urinating. The urethra will will be radiated, since it runs through the prostrate and will be affected. I was given Flomax, which solved the problem.
I had a Gleason score of 4+4 and was high risk. My treatment was proton beam therapy and 18 months of ADT. It's been 4 years and I'm cancer free and no longer have any side effects.
As far as the treatment, the actual radiation takes less than a minute each time. There's a fair amount of prep before treatments start with placement of small gold bits in the prostrate, measurements of exact location and size of prostrate, placement of small tattoos on your hips and possible insertion of a space oar gel in your rectum. Before each treatment starts, xray machines will be used to locate the metal in prostrate and tattoos to move you in exact location for the radiation. The amount of time in the treatment room is less than 15 minutes.
Choosing your treatment is not easy. Best of luck in your decision.

I have Gleason 3+4. Still evaluating but settling in on MRI radiation therapy. As they radiate, they can see how the tumor is affected by the treatment in real time. They also see where the healthy tissue is so mapping and protecting healthy tissue looks like it may be more accurate. If your prostate naturally moves, the machine turns off. No fiducial markers are necessary.