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Anyone had the 5 treatment proton therapy for prostate cancer?

Posted by daveywavey @daveywavey, Aug 13, 2020

Hi to all,
I am considering the 5 treatment proton therapy for my prostate cancer. It's that or surgery for me. I am in the anxiety fueled treatment quandary. Thanks Dave

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daveywavey | @daveywavey | Oct 10, 2020

Thanks for the reply. I finished 5 treatment Proton SBRT a couple of weeks ago at Mayo. Mayo has been using this treatment for a couple of years. They used the same pre-treatment prep as you described. So far side effects are very tolerable. I glad to here your follow up PSA tests have been great. A friend of my finished proton SBRT right after me and he is doing OK too. Hopefully we can follow you in beating PC.

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dandl48 Dave | @dandl48 | Oct 10, 2020

I finished the 5 Treatment Proton SBRT over a course of 11 days on 9/28. We drove 2,200+ plus miles each way and felt like a cleaning lady with the amount of disinfectant we used in 4 motel rooms each way and the VRBO we stayed at within walking distance of the Clinic. As daveywavey @daveywavey said the side effects are tolerable so far. Now the wait to see what my PSA is in 6 months and again in 12 months. I will be back at mayo for the 6 Mo. PSA since there are other health issues that needs tending to.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 13, 2020
In reply to @quantumflow "I completed a 5-treatment SBRT in August 2019. I completed 2 follow-up exams. PSA levels at..." + (show)
@quantumflow

I completed a 5-treatment SBRT in August 2019. I completed 2 follow-up exams. PSA levels at Feb, 2020 & Oct 2020 remain suppressed at 0.44 (was at 13.7 prior to treatment. By sheer luck, I was treated at the only VA oncology dept in the USA that offered the proton treatment. And, my doctor was a pioneer in the 5-treatment protocol during residency training at MSKCC in NYC. My doc had performed hundreds of these 5-treatment protocols.

PRE-treatment prep is ESSENTIAL (for me 6 visits) The exact, precise 3D imagining & position of your prostate needed to guide the delivery of radiation ton within 1mm of the boundaries of the prostate is crucial. Then, one must carefully follow all instructions as to fluid consumption prior to each treatment to ensure the prostate assumes the same 3D location as was achieved in the pre-prep imaging process. Finally, it is crucial in the pre-prep that the placement of the spacer between your prostate and rectum is dead-on to void harmful radiation exposure to the rectum
Finally, expect near-term urinary and ED issues.
Q - how experienced is your oncologist with the 5-treatment protocol? Equally important - how unified & disciplined is the doctor's pre-pre & treatment TEAMs (and I mean a TEAMs) with the procedures procedures
BK

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@quantumflow, welcome to Connect. You mention near-term urinary and ED issues. How are those issues for you now?

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quantumflow | @quantumflow | Oct 13, 2020

Getting up frequently during sleep continues. Also, ED continues. Certain drugs have been suggested for both issues. Time will tell. But, I can't lose sight of the fact that I am pretty much cancer free!!

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john57 | @john57 | Oct 13, 2020

I know the feeling. I get up several times a night

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dandl48 Dave | @dandl48 | Feb 7, 2022

On September 17th 2020 I started a regiment of 5 Proton treatments over a course of 10 days ending on 9/28/20. Before the treatment my PSA was 11+ with a Gleason score of 4 + 3. Since then, my PSA has been less than .01. I will be visiting with my radiation oncologist in Rochester the end of March and my concern is that the 5 treatments over the course of 10 days have fallen out of favor since it seems that no one is talking about it. Am I correct in my thinking or is it still being offered to Prostate Cancer patients?

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2 replies
Moderator
Amanda Roe | @amandajro | Feb 11, 2022
In reply to @dandl48 "On September 17th 2020 I started a regiment of 5 Proton treatments over a course of..." + (show)
@dandl48

On September 17th 2020 I started a regiment of 5 Proton treatments over a course of 10 days ending on 9/28/20. Before the treatment my PSA was 11+ with a Gleason score of 4 + 3. Since then, my PSA has been less than .01. I will be visiting with my radiation oncologist in Rochester the end of March and my concern is that the 5 treatments over the course of 10 days have fallen out of favor since it seems that no one is talking about it. Am I correct in my thinking or is it still being offered to Prostate Cancer patients?

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Hello @dandl48. Can I ask who isn't talking about the 5 treatments in 10 days? Is it your care team?

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1 reply
dandl48 Dave | @dandl48 | Feb 12, 2022
In reply to @amandajro "Hello @dandl48. Can I ask who isn't talking about the 5 treatments in 10 days? Is..." + (show)
@amandajro

Hello @dandl48. Can I ask who isn't talking about the 5 treatments in 10 days? Is it your care team?

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Those who are planning to undergo radiation for Prostate cancer seen not to be given the option of SBRT 5 treatments over the course of 10 days.

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3 replies
upnort | @upnort | Feb 12, 2022
In reply to @dandl48 "Those who are planning to undergo radiation for Prostate cancer seen not to be given the..." + (show)
@dandl48

Those who are planning to undergo radiation for Prostate cancer seen not to be given the option of SBRT 5 treatments over the course of 10 days.

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I would be interested in knowing more about this option (SBRT 5 treatments in 10 days). Does Mayo Clinic currently do this? Any feedback/info on this would be extremely helpful. Thanks.

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2 replies
dandl48 Dave | @dandl48 | Feb 12, 2022
In reply to @dandl48 "Those who are planning to undergo radiation for Prostate cancer seen not to be given the..." + (show)
@dandl48

Those who are planning to undergo radiation for Prostate cancer seen not to be given the option of SBRT 5 treatments over the course of 10 days.

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"SEEN" = SEEM

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