What were your side effects of proton therapy both during and after?

Thanks for the reply. I did not know that caffeine is to be avoided. Good to know!

Wasn't that a extremely low PSA given your large prostate size?

I have a lesion of 11mm on an average size prostate but with PSA 17.

Anyway, super glad it went well for you.

I really had a tough time with radiologist/oncologist wanted and recommended Photon and the attitude toward me when I chose Proton. My Proton treatment is 6 weeks M-F pencil. I was 3+4=7 (worst). However my Decipher came back low risk.

Hormone was discussed but have heart failure so ruled out. Glad it was as when Decipher came back it was deemed did not need hormone treatments just curative radiation.

I am going on my 4th week. I really do feel the sensation of the Space/Oar and it is discomfort. But much easier time going through radiation and not having to do ballon. I read at Phoenix Mayo one patient had the Space/Oar and ballon.

I really had some issues with gas, and controlling bowels. But I found out it was my diet not the treatments. Watch the gassy foods as they say as it will really affect your daily treatment. I was getting tired at end of 2nd week but has actually improved.

I would say the worst of having prostrate cancer is going through the first and second opinions and the attitudes you can run into with urologist and radiologist/oncologist. When I read a couple of books on this and they mentioned the attitudes I really did not belief it until I had to deal with it too. I wish I lived closer to Phoenix or Rochester to get the Mayo Proton treatments. Those locations sound great and good selections of treatments.

I am hoping my symptoms remain as is as it will not be bad. I have 3 weeks left. Again my biggest symptom is the discomfort from Space/Oar. My issues with gas and bowel issues was self inflicted and rectified by following recommendations on diet.

Thanks for the reply.
I feel it is alarming when the radiologist/oncologist changes their demeanor when the patient doesn't just say yes to their "guidance". I feel it is a kind of bullying considering the fragile mental state of the patient.
I am not having the SpaceOAR but have teetered on going for it. Doc has talked me out of it and the data isn't conclusive by any estimates. Still, I feel it is a risk and am concerned.

Again, thanks so much for the detailed reply.

The only reason I even knew something was wrong was my female endocrinologist did a full PSA test unlike my near worthless GP. My PSA had been in the 2.3 to 2.9 range for 5 years and she ordered the full PSA. The full PSA test is the PSA, PSA Free, and the PSA Free %. My free % was on the low side which caused me to be alarmed but my GP said it was nothing to worry about. The MRI at Mayo said 7mm and Pirads 4. If it was up to my ex GP I still would not have been treated. The lesion was not palpable on a DRE and only showed up on the MRI. I was worried about my urine flow after radiation because of my large prostate size but I actually think I am flowing better now than before the radiation.

A Flomax side effect can be dry orgasms (retro ejaculation).

@ozelli I wish you well on your proton treatments. Have some interest but not sure on proton since also hard to find long term outcomes as far as ED, ejaculation (dry or normal), though for sure one can expect less ejaculate since tissue will be lost in the prostate. Can you mention your prostate size and how many sessions they proposed for the proton? Are you getting treatment using the Mayo Hitachi proton?

You can see my two posts on this subject on page 1 and 2 of this thread. Ejaculation, I am not able to tell you as I have not had one yet. No desire yet.

Here is the only long term ED research as it relates to proton therapy. I am 61 so this kind of applies to my age group. Can’t post link still so just google “ Long‐term outcomes of proton therapy for prostate cancer in Japan: a multi‐institutional survey of the Japanese Radiation Oncology Study Group”

I am doing 21 sessions in a facility in Kagoshima, Japan. Not sure of the machine but facility was finished in 2011, so pretty new. The newer the better imo.

Had my first session today…..was quite nervous but it was a breeze.

Prostate size is 40cc.

I am almost half way through and do have a few side effects. Certainly urinating a lot more, getting up about 5 times a night (1 or 2 times typical before treatment).

Erections seems OK. 90% if I had to guess. Ejaculation a bit on the painful side. The doc said these side effects should pass within a month or so after finishing treatment.

Tired during the day. Have a nap in the afternoon which is very unusual for me. So far, so good.