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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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

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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.

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@michael219

Wow, only 5 treatments over 2-weeks? I am looking into Proton as a potential prostate cancer treatment, but we've been told it's 28-39 treatments over 6-8 weeks. I'd like to know the details of your treatment plan if you'd share them…?
Thank you!

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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.

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@jb2buckwater

I believe dandl48 is correct, SBRT is used for both Photon and Proton Radiation. Studies have yet to prove whether Proton is safer with fewer side effects than Photon. The thought is that Protons are delivered with a finer beam and this may reduce likelihood of radiation impacting non-prostate cells. Also, protons enter the prostate but do not exit… they only have an entrance path where as photons travel through the prostate and exit on the other side.

My last of 5 Proton treatments was Thursday 1/19/23. No major issues. Two days of prep, then 5 days of treatment. With the Holidays and a mild case of Covid the entire process took a bit longer than if it were done outside the Holiday Season and without the Covid.

Cannot say enough about the great people at Mayo Rochester. This is a national treasure. Rochester is known as Med-City and it is no wonder. Thousands of Doctors and many more staff. New buildings going up on Campus. Glad I made the investment to travel to Minnesota. Oregon, where I live does not have a Proton Beam facility and it did, it would still be a wise investment to make the trip to Minnesota. Out of towners can also find free lodging during treatment if needed. My wife and rented a house south of town and enjoyed a snowy Holiday Season.

Best wishes to all.

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@jb2buckwater Love seeing another Oregonian here. Yes, the city of Rochester is a Med City with the last I read that the city has a population of 110,000 with over 35,000 people working directly for Mayo.
Be well,
Dave

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@dandl48

@michael219 Michael My Gleason score was 4+3, like Jim with a PSA of 11+(I was off finasteride for a month or so). Don't know the Decipher score. I believe that both Photon and Proton can be used in SBRT. My current PSA's since the SBRT via Proton has been <.01 with my next blood draw in April.

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I believe dandl48 is correct, SBRT is used for both Photon and Proton Radiation. Studies have yet to prove whether Proton is safer with fewer side effects than Photon. The thought is that Protons are delivered with a finer beam and this may reduce likelihood of radiation impacting non-prostate cells. Also, protons enter the prostate but do not exit… they only have an entrance path where as photons travel through the prostate and exit on the other side.

My last of 5 Proton treatments was Thursday 1/19/23. No major issues. Two days of prep, then 5 days of treatment. With the Holidays and a mild case of Covid the entire process took a bit longer than if it were done outside the Holiday Season and without the Covid.

Cannot say enough about the great people at Mayo Rochester. This is a national treasure. Rochester is known as Med-City and it is no wonder. Thousands of Doctors and many more staff. New buildings going up on Campus. Glad I made the investment to travel to Minnesota. Oregon, where I live does not have a Proton Beam facility and it did, it would still be a wise investment to make the trip to Minnesota. Out of towners can also find free lodging during treatment if needed. My wife and rented a house south of town and enjoyed a snowy Holiday Season.

Best wishes to all.

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@michael219

dandl48 Dave, one of the centers here in Florida suggested SBRT over 5-days, with three other days for preparation. What were your Gleason scores and did you also have a Decipher score?
We've had a concern about such high doses of radiation over such a short course of time so this is of interest.
I have not heard of SBRT Proton, I just noted that in your comment. I've been told that SBRT is Photon, perhaps I am, missing something…?

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@michael219 Michael My Gleason score was 4+3, like Jim with a PSA of 11+(I was off finasteride for a month or so). Don't know the Decipher score. I believe that both Photon and Proton can be used in SBRT. My current PSA's since the SBRT via Proton has been <.01 with my next blood draw in April.

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@michael219

Wow, only 5 treatments over 2-weeks? I am looking into Proton as a potential prostate cancer treatment, but we've been told it's 28-39 treatments over 6-8 weeks. I'd like to know the details of your treatment plan if you'd share them…?
Thank you!

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I had a Gleason score of 4+3 (nor sure of decipher score). PSA 8.3 (on finasteride so probably should have been thought of as 2X8.3) mpMRI showed anterior tumor.
I was approved for 5 treatment sessions of PBT at Mayo Rochester. Not all proton treatment centers have the same tech, so some are using ‘older’ protocol of five treatments per week/five weeks. Early 2020 treatment with 4 months of ADT. My PSA scores are holding at less than .10
Hope that helps

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@dandl48

@metman This coming September will be 2 years since I had SBRT Proton therapy for prostate cancer. It was 5 treatments over the course of 10 days. No pain at all and the prep was easy. Since then I've had PSA ratings of < 0. 1 with my last visit last week to Mayo Rochester. I'm very pleased with the result.

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dandl48 Dave, one of the centers here in Florida suggested SBRT over 5-days, with three other days for preparation. What were your Gleason scores and did you also have a Decipher score?
We've had a concern about such high doses of radiation over such a short course of time so this is of interest.
I have not heard of SBRT Proton, I just noted that in your comment. I've been told that SBRT is Photon, perhaps I am, missing something…?

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@jb2buckwater

Wow Jrhamp, thanks for this details of how Proton Beam was performed 10 years ago. It has changed dramatically, especially the length of treatment, now 5 treatments over a 2 week period. No balloon either, in fact nothing intrusive once the 4 carbon markers are inserted into prostate gland.

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Wow, only 5 treatments over 2-weeks? I am looking into Proton as a potential prostate cancer treatment, but we've been told it's 28-39 treatments over 6-8 weeks. I'd like to know the details of your treatment plan if you'd share them…?
Thank you!

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I am 75 y/o and had an elevated PSA two years ago, a 5.7 in February 2021. One year later in March 2022 it was 7.7. At that point I decided to have a prostate MRI which indicated a PIRADS 4 with two discernible lesions. I then had a biopsy with 20 needle sites. That was May 31, 2022 and I began Lupron injection on June 19, 2022 prior to beginning my Proton beam treatments on Sept. 08, 2022. Six weeks after 39 sessions of Proton beam therapy and six months of Lupron therapy my PSA was 0.04. I received my second six month duration Lupron injection in December 2022 and will receive the third and last one six months later. This will complete the hormone suppression therapy of 18 months duration. I had a Gleason score of 4+4 in two samples and 3+4 in two other samples and a score of 4+3 in one sample. My Dicipher score showed that I was in the low risk group for recurrence but my radiation oncologist and my urology oncologist both stated that studies have shown that the high risk group I fall into based on the biopsy indicate 18 months of hormone suppression therapy beginning two months before Proton beam therapy began is the course to follow for the lowest chance of recurrence of the cancer. The greatest side effect I am experiencing with the Lupron therapy is weight gain and the hot flashes.
I did read that after the radiation treatment is completed one will see a PSA that may fluctuate in the lower ranges for maybe up to 18 months and then it will settle down to the low number for your baseline. I don't recall if that is for someone undergoing radiation with or without the hormone suppression. My guess is it would be without the suppression because the Lupron is so effective in bringing the PSA to a very low level. Ten weeks after starting Lupron and before radiation my PSA went from a 7.7 to a 0.2 !

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