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."

Cyber knife uses high doses of radiation as opposed to Proton therapy which has potentially more risk to healthy tissues around the prostate. That’s why it only uses 5 doses. I opted for Proton therapy, much less risk of collateral damage to bladder, urethra, rectum, etc. I don’t believe it’s a money issue, but a safety issue. Do more research before deciding the quicker route.

Hi jc76, I met with my urologist and oncologist at one highly regarded hospital in a large metro area. The oncologist discussed Active Surveillance (AS), Brachytherapy and 5 Proton Beam(PB) treatments. He was Extremely unwilling to suggest one of these or any others (law suit ??). Since I'm very concerned with the "possible" side effects of the 5 Proton Beam treatments, I am in the process of scheduling a second opinion appointment with an oncologist at a nearby major hospital. The question is will any of these possible side effects be temporary or long term? The issue I have with Brachytherapy is that the radioactive seeds are seemingly placed throughout the entire prostate and not just next to the tumor/s thereby giving radiation to the whole prostate (I think). Also, the placement of the seeds totally depends on the skill of the doctor. However, the PB approach targets the tumor, BUT does not result in an "exit dose" of radiation outside of the tumor. I can understand why your urologist would not want to see you after PB treatments. My first oncologist is at a hospital that offers PB treatments while the oncologist for the 2nd opinion is at a hospital that offers CyberKnife which uses x-rays or photons. So, if I choose hospital A I won't be relying on any of the medical staff at hospital B. Please keep me informed about any side effects you encounter and what your doctor says about them.

Hi jc76, I met with my urologist and oncologist at one highly regarded hospital in a large metro area. The oncologist discussed Active Surveillance (AS), Brachytherapy and 5 Proton Beam(PB) treatments. He was Extremely unwilling to suggest one of these or any others (law suit ??). Since I'm very concerned with the "possible" side effects of the 5 Proton Beam treatments, I am in the process of scheduling a second opinion appointment with an oncologist at a nearby major hospital. The question is will any of these possible side effects be temporary or long term? The issue I have with Brachytherapy is that the radioactive seeds are seemingly placed throughout the entire prostate and not just next to the tumor/s thereby giving radiation to the whole prostate (I think). Also, the placement of the seeds totally depends on the skill of the doctor. However, the PB approach targets the tumor, BUT does not result in an "exit dose" of radiation outside of the tumor. I can understand why your urologist would not want to see you after PB treatments. My first oncologist is at a hospital that offers PB treatments while the oncologist for the 2nd opinion is at a hospital that offers CyberKnife which uses x-rays or photons. So, if I choose hospital A I won't be relying on any of the medical staff at hospital B. Please keep me informed about any side effects you encounter and what your doctor says about them.

I am already done with the SRBT 5 dose Proton treatment at Mayo Phoenix. It has been 35 days since my last dose and the side effects have been minimal to the point I wonder if they even gave me radiation. I had slight pinkish discharge before a bowel movement the first two weeks after (more like a wet pinkish fart) and two 5-inch pink circles on each hip where the beams were aimed. I almost felt guilty ringing the bell. Only time will tell if I made the right decision. I did get the SpaceOar gel inserted to protect my rectum and hopefully have no problems in the future. Urine flow is fine, and I still drink my two mugs of coffee every day so no bladder irritation.

Good information. I am having the proton treatment also but at another provider. The side affects you mentioned were given to me as side affects and "normal" during and after the treatments.

When you had the SpaceOar did you feel it? Mine is pronounced and can feel it. It is just like they said feels like you need to take a BM. Mine seems to have leveled off but quite noticeable.

What is the SRBT? What I have is the pencil treatment and 6 weeks. I did have the Decipher, biopsy, MRI, Pet Scan, bone scan. When Decipher came back the oncologist at first consultation said was in contrast to biopsy as Decipher said "low risk" and biopsy said intermediate risk.

Good information. I am having the proton treatment also but at another provider. The side affects you mentioned were given to me as side affects and "normal" during and after the treatments.

When you had the SpaceOar did you feel it? Mine is pronounced and can feel it. It is just like they said feels like you need to take a BM. Mine seems to have leveled off but quite noticeable.

What is the SRBT? What I have is the pencil treatment and 6 weeks. I did have the Decipher, biopsy, MRI, Pet Scan, bone scan. When Decipher came back the oncologist at first consultation said was in contrast to biopsy as Decipher said "low risk" and biopsy said intermediate risk.

I had 20 treatments 3 years ago. The treatments are pain free and last less than a minute. The only side effect was some pain while urination that started a week in. Flomax drug took care of pain but needed to continue using it because radiation can have lasting effect on muscles in urethra. I have 6 month check ups and PSA has been negligible every time. Other then the commitment to the time for treatments, the side effects are much better then friends who chose surgery. You will likely meet other men going through the same experience. The group experience helps make it through it.

Best of luck.