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Starting Proton Treatments for Prostate Cancer: Any experiences?

Posted by desertrat @desertrat, Feb 5, 2022

I am 69, just been diagnosed with prostate cancer, Gleason score of 3 + 4, PSA is 4.2. I have opted to do 28 treatments of proton radiation only. I would appreciate hearing from others who have been through this and how it worked out for you. Thanks in advance!

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bens1 | @bens1 | May 30, 2023
In reply to @rockin2047 "Thanks for the quick reply. Regarding the placement of the carbon markers, I had read that..." + (show)
@rockin2047

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."

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Found your whole response interesting and helpful. Maybe radiopharmaceuticals for BCR, hopefully without all the adt pre treatment.

I had narrowed my research down to Proton or the MRIdian from viewray. I am 69. PSA was 10.2. Did Decipher and spaceoar. Healthy tissue exposure was key to my decision. Proton had a precise beam but used 4-6 mm margins with fused images and positioning and movement a real issue. I went with Viewray and finished my 5 treatments in February. 2 mm margins, combo radiation MRI unit, auto turn off and dynamic plan adjustment, if needed. Google the Mirage study. I had minimal side effects with urination.

BMC publishing did an article in May of 2020 discussing a built in mri into a proton therapy machine, which does not exist in the marketplace. Had that existed, with some of the extras, I would have chosen it.

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1 reply
mikewo | @mikewo | May 30, 2023
In reply to @bobulmer46 "Cyber knife uses high doses of radiation as opposed to Proton therapy which has potentially more..." + (show)
@bobulmer46

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.

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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.

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1 reply
mikewo | @mikewo | May 30, 2023
In reply to @rockin2047 "Hi jc76, I met with my urologist and oncologist at one highly regarded hospital in a..." + (show)
@rockin2047

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.

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I only did 5 proton treatments but was told that the proton not only targets the lesion but they do radiate the whole prostate and 2mm of the seminal vesicles. I am done with the radiation with no problems and today is 35 days after my last treatment. Why brachytherapy with proton beam?

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1 reply
jc76 | @jc76 | May 31, 2023
In reply to @rockin2047 "Hi jc76, I met with my urologist and oncologist at one highly regarded hospital in a..." + (show)
@rockin2047

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.

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Thanks rockin2047, Regarding my urologist I asked I start seeing him again AFTER my treatment was over at the other provider. He did not want to do that since I had radiation at another provider. I asked another provider what they say when individuals come to this provider from another country. Or another state. Do they tell them can't see them since had radiation somewhere else. It was not for during treatment or follow up, rather later just to have monitoring of this and other conditions. I expected if thought connected to treatment at other provider I would be referred back to them. But for all other things and second opinons would be seen like I have been seen by my main provider. .

This same provider is where I went for second opinions for ICD/Pacemaker surgeries and there was NO problem seeing or giving me second opinions. And they asked me to have a cardiologist/electrophysiologist coordinate with them if I chose them for surgery.

Regarding your proton treatments. The proton is special radiation that does not have significant incoming or exiting radiation. It is designed to release radiation at the tumor or cancer area. It has little or no exit radiation beyond the cancer area. It is why I chose it above the standard radiation treatment the other provider offered. What got me was the comment at standard radiation was, "Any secondary cancers caused by this treatment would not have to be dealt with until 10 years."

I have had no side affects yet. The only issues I have had are trying to hold the water you have to drink and facing any delays. I have to drink 16 oz of water 30 minutes prior to treatment. That is fine and can hold it but any delay I am in misery. I am in my second week and so far other than the space/oar feeling wierd no change.

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jc76 | @jc76 | May 31, 2023
In reply to @mikewo "I am already done with the SRBT 5 dose Proton treatment at Mayo Phoenix. It has..." + (show)
@mikewo

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.

Jump to this post

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.

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2 replies
mikewo | @mikewo | May 31, 2023
In reply to @jc76 "Good information. I am having the proton treatment also but at another provider. The side affects..." + (show)
@jc76

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.

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I did not feel the SpaceOar as my urologist insistent that I be knocked out. His buddy must be an anesthesiologist and needed to make a mortgage payment even though he did my 30 core transperienal biopsy and knew I didn't flinch once. I am still pissed about it. I did not even notice anything after the procedure and the ficuidal marker placement. SRBT is the very high dose 5 radiation treatment weather it is proton or photon.

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jb2buckwater | @jb2buckwater | Jun 1, 2023
In reply to @jc76 "Good information. I am having the proton treatment also but at another provider. The side affects..." + (show)
@jc76

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.

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The injection of SpaceOAR is less painful than a biopsy. If you experienced only minor discomfort with biopsy, you will need no anesthesiology other than the lidocaine which is administered just prior to injection of SpaceOAR. At least this was my experience at Mayo Clinic Rochester.

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jibway | @jibway | Jun 2, 2023
In reply to @waynen "I had 20 treatments 3 years ago. The treatments are pain free and last less than..." + (show)
@waynen

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.

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My husband just started his radiation treatment, his 3rd session he is having extreme pain waiting for pee to come, after peeing, pain still there for several minutes. It’s Friday, won’t see dr. Til Tue

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1 reply
waynen | @waynen | Jun 2, 2023

I didn't have pain during the radiation but did have pain when I started to urinate 5 days after we started, but I was warned that it might happen because the muscles in the urethra would get radiated. As soon as it started, they gave me Flomax that took care of the problem. I would suggest you contact them now to get a prescription. The other thing is he may have urgency when he feels to go. He can hold it awhile but not normal and it will also go away. If he hasn't discussed this, they should give him more information. I also had Lupron for 18 months with its own issue that are much worse than the radiation. Good luck to him. The radiation was a lot less side effects than friends who had surgery.

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waynen | @waynen | Jun 2, 2023

To get the relief from the urinating pain by going to urgent care and they can give a prescription. You probably don't need your radiation oncologist to prescribe it.

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