Starting Proton Treatments for Prostate Cancer: Any experiences?

Thanks for the quick reply. Regarding the placement of the carbon markers, I had read that they would be gold markers not carbon. Isn't carbon toxic to the body? At least with gold ones they're worth about $2,000 per oz and could help to pay for a lot of Depends !! In the case of Brachytherapy "small, completely dissolvable radioactive beads (coated in Titanium) are implanted around the entire prostate area. This therapy targets the affected area more specifically than IMRT and other external radiation therapies, resulting in a shorter treatment time and, often, fewer side effects. Within one to four weeks, depending on what type of seed we use, treatment is done,” Dr. Runz said. “There is no need for the seeds to be removed.” I had a transperineal biopsy performed using "micro ultrasound" which is the latest thing and much better images than standard ultrasound. It was actually able to find a third lesion as opposed to only two detected by the MRI. The one Gleason 7 tissue sample was sent out for a Decipher test which I highly recommend your friend request which Medicare will pay for. It examines the DNA of his cancer cells and makes a risk assessment as to whether he is at Low Risk, Interm Risk or High Risk. Mine was Low Risk at 0.37 where they said I was a good candidate for Active Surveillance(AS) or local radiation. Since my dad died of PC I don't want to end up like him. Regarding AS make sure your friend reads the report on the NBC TV website. Use the following search phrase "Study finds prostate cancer treatment can wait for most men." This long term study (started in 1999) was released March 11, 2023 and involved 1,600 U.K. men. It concluded that there was no difference in PC death at 15 years between the 3 groups. Survival for all three groups was 97%. regardless of treatment approach. These findings do not apply to men with high-risk or more advanced disease who need urgent treatment. If I and your friend choose AS, it may be possible in just a few years to benefit from the new field of "radiopharmaceuticals." This will be a game changer. Use the following search phrase "Cambridge biotech raises $90 million for drug that uses radioactive atoms to fight prostate cancer." My plan is to get a second oncologist's opinion and then decide what to do, either AS or 5 Proton Beam treatments using the CyberKnife robotic arm approach. One website said that 5 Proton Beam treatments using a higher dose of radiation was found to result in much lower cases of PC recurrence as compared to 20 to 30 low doses over 6 to 8 weeks. Thanks for your info since I learned a few more things. What are your thoughts? Tell your friend to read about the experience @bjroc has had regarding using AS dated May 15, 2023. This is exactly what I fear, things just start to go South without warning. As my first oncologist said to me "Radiation is the price you pay for insurance."

@rockin2047 , I think I was fortunate because the only side effect I experienced during treatment was urgency to urinate, but as I recall it was only during the first couple of weeks of treatment (after that ... no urgency experienced). I experienced no bowel or rectum issues (I had SpaceOAR) and no ED issue. During each weekly consult with my oncologist, he seemed really pleased that I wasn't experiencing other common urinary difficulties (e.g., hesitation, dribbling, weak stream, incomplete bladder emptying), painful urination, or frequency of urinating. In speaking to a few other guys who were being treated during the same timeframe, it seems that their urinary difficulties were successfully treated with Flomax pills. Also, keep in mind that I didn't have SBRT so my experience (lower radiation doses over longer timeframe) may not be a good indicator for you.

I am 74. Had a 7mm lesion confined to the prostate on a PSMA Pet scan. PSA 2.9 and had been in the mid 2's for 5 years. MRI fusion TP biopsy showed 3-4 in 2 cores and 4-3 in two cores out of 30 cores taken in my 120 gm prostate. I finished a 5 session Proton radiation treatment on April 26, 2023. The only trouble I had was after the 2nd session. After the 1st session I got out to the car to drive home and drank my mug of coffee and when I got home, I finished the pot. I did the same thing after the 2nd session even though everything I read said to avoid caffeine. I must say my bladder agreed with that suggestion whole heartedly. I had urgency issues about every 15 minutes even if I barely had to urinate. Needless to say I avoided my coffee for about a week after my last session and I am fine now. I had a little pinkish discharge for a few days like a wet fart before having my morning bowel movement. I almost wonder if they actually gave me enough radiation as I was prepared for side effects that never appeared. What the future holds who knows but I did get the SpaceOar Gel inserted also. Best of luck to you.

You decide how many. Originally they wanted 28 proton treatments for me but the minute I talked about CyberKnife needing only 5 all of a sudden "we can do 5". Think about it. How much do hospitals make on 28 treatments vs 5? Of course they want you to take more.

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

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).

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 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?

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 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?