Starting Proton Treatments for Prostate Cancer: Any experiences?

I don't come to the site much, but happened "again" to see your comment about my comment.

The last day of treatment at Loma Linda ten years ago (10 weeks of proton radiation), I attended a very large meeting with perhaps over 150 men who had joined the "brotherhood of the balloon". This referenced the balloon which was insert into the rectum and inflated to position and affirm the exact location of the prostate cancer.

The moderator started out with general comments, then asked the group.."how many had PSA over 100?" Several hands went up. He proceeded to scale down to ask the group PSA numbers in grouping. I recall, the majority had PSA of over 10 but under 20.

When I went in..my PSA was 6.4. I discovered it early.

The finality of the moderator was when he asked how many had PSA under 2.0..and all hands went up. At that moment, I knew the correct decision was made, having made the proton radiation decision absolutely solo. I was just after US Army active duty retirement and was working contract for Dept of Defense in Horn of Africa. I went back to Africa for another tour in horrific security and living conditions..and nothing phased me as a result of proton radiation therapy.

If anyone else reads these comment, I truly recommend one does their due diligence on what treatment is best for them..and validate that decision with multiple recommendations from various sources. Do Not depend on one physician to make this life changing decision.

Finished 5 dose Prot5on Beam at Mayo Rochester on 19 January. The only inconvenience I have experienced is a noted restriction when urinating. I have been to9ld that this is due to inflammation of the Prostate Gland. Well, that makes sense since between September 9 and January 19 I have had 13 biopsy core extracted, 4 carbon markers inserted, hydrogel squeezed between the prostate and rectum, 5 doses of proton Beam Radiation administered and 9 enemas. Poor loittle prostate is a bit inflammed, can't blame it. Ibuprofen seems to help with the swelling and if it lasts longer than a few weeks I will be prescribed MaxFlow to assist with urination.
Best wishes with your experience.

Make sure last 5 are rapid arch to get the margins then asl about Zolodex injection

5 years then met to L2 which I had radated Back on Zolodex and after2 year added Xtandi or Enzalutamide

78 and smiling every day is a blessing

Anybody who got the proton treatments in 2022 and 2021 have any updates to share?

My partner has prostate cancer, PSA 11, then 14, then 10 and Gleason 6. He started taking climax, then changed to pumpkin seeds and walnuts. His PSA went down from 14 to 10. Very seriously considering proton therapy.

I am considering SBRT Proton for 5 sessions over 2 weeks and would like to know if you experienced any side effects such as urinary or bowel problems, rectal irritation, erectile dysfunction or fatigue. One website said that side effects are usually temporary. What does prep consist of a number of enemas? My urologist found 3 lesions with Gleason scores of 3+3, a 3+3 and a 3+4. The 3+4=7 tissue was sent out for a Decipher test. A month later the results came back with good news. The risk score was 0.37 which put me into the Low Risk category. The report said I was a candidate for Active Surveilllance or radiation applied locally. My oncologist said that there is always going to be "toxicity" (side effects) with any kind of radiation. To have a buffer between your prostate and rectum did you receive SpaceOar (hydrogel) and was it put in at the same time you got the markers in your prostate?

PSA 3.0 with Gleason of 7 (3+4) Decipher score of 0.37 (low risk) at age 76. Excluding Lupron, how can you explain "No side effects from proton?" Not even one urinary and/or bowel problem or even erectile dysfunction? That's great news Bob. How are things now after a few years have passed?

I have two Gleason 6 (3+3) and a Gleason 7 (3+4), with a 3.0 PSA and Decipher 0.37 (low risk) at age 76. You said you had "no side effects during or after my 28 Proton-only treatments." Were you just awfully lucky? I keep reading on the net about the possible side effects. What did your oncologist say regarding side effects?

Rockin2047,
Yes, I received SpaceOAR which was injected during the same procedure as the placement of the carbon markers. The procedure took about 15 minutes. This procedure was less uncomfortable than the biopsy. If you experienced minimal discomfort during biopsy, the marker placement and hydrogel will be almost painless.
I also could have followed Active Surveillance, PSA 10.5, Gleason 6. Chose to get treated at Mayo Clinic Rochester. Experience was exemplary as would be expected at this institution.
Regarding side effects, I experienced the following issues. After Marker Placement and Hydrogel injection I started having issues urinating completely... which also seems to cause more frequent urination, greater urgency to urinate and slow urination stream. This continued through 5 Proton Beam sessions and approximately 3.5 months after last treatment. My sleep was disrupted by having to urinate 5 times a night on average. After 3.5 months these symptoms stopped and urination is now back to normal. My radiologist indicated that these symptoms are likely caused by the prostate being swollen, recommending Ibuprofen to reduce symptoms.
My guess as a layperson is that we must expect some swelling of prostate given what it has experienced, biopsy, markers, and radiation... it also seems that the SpaceOAR may put some pressure on urethra via prostate. This starts to be absorbed by the body after a few months and is gone after 6.
Good friend just got his Gleason 6 diagnosis, PSA 5.1. He is choosing Active Surveillance and will get another biopsy in 1 year. By that time there may be a 1 or 2 dose Proton Beam therapy available.
Best wishes,

I will have completed my 20th treatment on May 16. No SpaceOAR gel used. Some minor side effects which were expected. Treatment time is around 15-20 minutes.
Hmm...pumpkin seeds and walnuts? I do take 2 Amygdalin- 100mg tabs per day ( aka, vit. B17).

I have been on AS two years (past one lesion 3+3 but always increasing PSA), unfortunately I have to get treated. PSA increased over 15 now, prostate over 100 cc, several lesions now, one was not hit properly on last biopsy but it is there, and what they got has 4 in there, but report notes it was not enough sample to call the lesion grade fully, other is a 3+4 lesion now so it is going to get treated.

Can anyone comment about inclusion and exclusion criteria for Proton in Rochester?
Did you have just one lesion or more than one anyone?
Do they aim the beam such that it kills just the lesion or does it just cover the whole prostate?
Can anyone say on ED rates, say 6 months, 1 year, 5 years, 10 years (be honest)?
How do they decide the 5 treatment sessions versus some say 20, etc?

Thanks in advance