Starting Proton Treatments for Prostate Cancer: Any experiences?

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 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,

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."

If everybody researched PC as thoroughly as you I believe there would be far fewer RPs and many fewer sleepless nights. Worth a read is "Invasion of the Prostate Gland Snatchers", by Scholz and Blum. I chose the insurance policy of 5 dose Proton SBRT but my urologist would have gladly performed RP.
Cheers.

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."

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.