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

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@jb2buckwater

Colleen, Spoke with Dr. Choo and Derek Remme on Thursday. We are scheduled to start PB SBRT on 13 December with completion 9 January. I feel very fortunate to have found this team. They were very reassuring. Given the Gleason 6 diagnosis it is unfortunate that many men freak out and just want the prostectomy before do research. People need to take a deep breath and look at all of the available options including active surveillance.

My wife and I are renting a home 1 mile from the Clinic for a month and a day. We'll be packing winter clothes!
Thanks for reaching out.
Cheers,
Jeff Baymor

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jb2buckwater: what made you finally decide to go with proton therapy versus a removal of the prostate? I have done Lots of research and my brother is having a radioactive insert(not seeds) in nyc For his newly discovered prostate cancer but the decision which procedure to have is definitely not black and white. The long-term leakage to the bladder from proton radiation were of concern to me. I have my biopsy on Tuesday but I already had my MRI. Showing a growth. That’s why I asked the question. I would welcome your thought process.

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bens1,
I was diagnosed on September 13 after biopsy on Sept 8. Gleason 6 Intermediate Risk due to 10.5 PSA. Of course I was rattled. My Urologist gave me options, prostectomy, irradiated seeds, Radiation. I started reading, survivng with Prostate Cancer and Invasion of the Prostate Gland Snatchers. The first of these is excellent in explaining the diagnosis, the survival rates as well as treatments. Radiation has progressed dramatically. To reduce risk of damage to bladder and rectum, a get is now used to move the bladder and rectum as far away from radiation as possible. One such is SpaceOAR: https://www.oncolink.org/cancers/prostate/treatments/spaceoar-rectal-spacer-for-prostate-radiation-therapy.

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If you have Gleason 6, you have time! It could take years to progress especially if it is low risk. It does not mean that you don't have cancer... you do. But it could be very slow. My own research suggested that the invasive nature of a Radical Prosectomy was riskier than PB SBRT. First there is the general anesthesia which is not without risk in and of itself. Then there is the operation itself. Again, I recommend reading Surviving with Prostate Cancer. The operation is clearly illustrated. Is PB SBRT without risk... no. After research I felt the risk was lower with PB SBRT. Will new approaches be developed... I would guess yes. You and I lucky that we were diagnosed now versus 1992... but perhaps not as lucky as if diagnosed in 2042. By then people will look back at us and our doctors and wonder how we could be using such old technology! Best wishes for a successful outcome.

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2017 PC with 40 days radiation Jan 2018 + Bicalutamide and 1 year Zolodex so PSA then <.01 Robotic was stopped as it would have made me incontinent.
March 2021 PSA 26 and MRI found L2 lumbar with 1 inch of cancer then intensely radiated and back on Zolodex and now every 3 months Recently PSA rose to 4.22 then 3 weeks later 5.32 I feel great but concerned I have been Stage 4 castrate sensitive metastasized Pray its not turning resistive

Phone call with Oncologist Monday St Rita please intercede again for me

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jb2buckwater: Thanks for adding some helpful detail. That all makes sense to me. My brother is about to do spaceoar and then do MRI guided radio therapy with the Meridian machine. Medicare issues notwithstanding, it almost makes more sense than Proton Therapy. Given the timing of when you got your results back, I guess in about a week I will know more myself. I will probably ask the doctor for some genetic tests to back up his pathology report, and maybe to help my kids at the same time with their future. As to the future treatments, you’re right we are lucky someday they will just have a Star Trek co2 injection that targets and solves the problem much faster, Thanks again. I guess we will all continue to look for new answers all the time.

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@melcanada

2017 PC with 40 days radiation Jan 2018 + Bicalutamide and 1 year Zolodex so PSA then <.01 Robotic was stopped as it would have made me incontinent.
March 2021 PSA 26 and MRI found L2 lumbar with 1 inch of cancer then intensely radiated and back on Zolodex and now every 3 months Recently PSA rose to 4.22 then 3 weeks later 5.32 I feel great but concerned I have been Stage 4 castrate sensitive metastasized Pray its not turning resistive

Phone call with Oncologist Monday St Rita please intercede again for me

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melcanada: thanks for your thoughts. What a rough freaking journey for you I hope the oncologist can help. They seem to be coming out with new twists on radiation and chemotherapy on a regular basis.

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@melcanada

2017 PC with 40 days radiation Jan 2018 + Bicalutamide and 1 year Zolodex so PSA then <.01 Robotic was stopped as it would have made me incontinent.
March 2021 PSA 26 and MRI found L2 lumbar with 1 inch of cancer then intensely radiated and back on Zolodex and now every 3 months Recently PSA rose to 4.22 then 3 weeks later 5.32 I feel great but concerned I have been Stage 4 castrate sensitive metastasized Pray its not turning resistive

Phone call with Oncologist Monday St Rita please intercede again for me

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Dear Melcanada,
A close friend in Sweden is in a similar situation. Stage 4, metastasized to bones and another organ. On hormones, questioning next steps. I have suggested that he look at other Stage 4 threads such as this one:
https://connect.mayoclinic.org/discussion/stage-4-treatment-options/

Best wishes for a successful outcome.

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@bens1

jb2buckwater: Thanks for adding some helpful detail. That all makes sense to me. My brother is about to do spaceoar and then do MRI guided radio therapy with the Meridian machine. Medicare issues notwithstanding, it almost makes more sense than Proton Therapy. Given the timing of when you got your results back, I guess in about a week I will know more myself. I will probably ask the doctor for some genetic tests to back up his pathology report, and maybe to help my kids at the same time with their future. As to the future treatments, you’re right we are lucky someday they will just have a Star Trek co2 injection that targets and solves the problem much faster, Thanks again. I guess we will all continue to look for new answers all the time.

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Bens,
Yes, Stereotactic Radiation Therapy guided by real time MRI is in my opinion the correct approach. The Proton Beam version versus Photon Beam version is the only difference between what your brother is receiving and myself. The long term studies on the newer Proton Beam are not yet available. This process MAY provide a more targeted approach... but both appear to be highly efficacious for early stage prostate gland cancer treatment. The Proton approach is not as widely available as of yet.

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@jb2buckwater

Bens,
Yes, Stereotactic Radiation Therapy guided by real time MRI is in my opinion the correct approach. The Proton Beam version versus Photon Beam version is the only difference between what your brother is receiving and myself. The long term studies on the newer Proton Beam are not yet available. This process MAY provide a more targeted approach... but both appear to be highly efficacious for early stage prostate gland cancer treatment. The Proton approach is not as widely available as of yet.

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Here's a map that has the locations of hospitals that have Proton Beam treatment. Don't know how old the map is. https://www.proton-therapy.org/map/

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@jb2buckwater

If you have Gleason 6, you have time! It could take years to progress especially if it is low risk. It does not mean that you don't have cancer... you do. But it could be very slow. My own research suggested that the invasive nature of a Radical Prosectomy was riskier than PB SBRT. First there is the general anesthesia which is not without risk in and of itself. Then there is the operation itself. Again, I recommend reading Surviving with Prostate Cancer. The operation is clearly illustrated. Is PB SBRT without risk... no. After research I felt the risk was lower with PB SBRT. Will new approaches be developed... I would guess yes. You and I lucky that we were diagnosed now versus 1992... but perhaps not as lucky as if diagnosed in 2042. By then people will look back at us and our doctors and wonder how we could be using such old technology! Best wishes for a successful outcome.

Jump to this post

They are planning to recategorize Gleason 3+3=6 as not being "cancer" because it is known to not metastasize. It's benign: it stays in the prostate and will not kill you.

Still need to monitor (AS), as it may mutate into Gleason 3+4=7 etc, or there may be 4 or 5 present but missed by the biopsy.
https://youtu.be/NV8QHzbgamI

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