Proton Beam Therapy - Comments on adding ADT? Yes or No?

Posted by kansascityhusker @kansascityhusker, Oct 5, 2021

So I am very early into my Proton Beam Therapy to treat my prostate cancer. My cancer was evaluated as "intermediate risk" -- with a Gleason Score of 7 (4+3) and PSA of 7.9. I am 68 years old. I have had 4 sessions of my 28 scheduled Proton Therapy sessions. I, initially, decided to turn down 6 months of ADT -- even though it was recommended. I did that primarily because I had heard that with my numbers I might not need ADT. Wondering if maybe I should reconsider? Anyone have any experience either pro or con taking 6 a month dose of ADT with their Proton Therapy to treat their prostate cancer? Appreciate any outcomes or experiences that anyone can share.

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

Any comments on hormone therapy pro/con after proton beam radiation.Cancer is contained in prostate and considered moderate.

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@rcooley36

Any comments on hormone therapy pro/con after proton beam radiation.Cancer is contained in prostate and considered moderate.

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I got a shot of Lupron prior to PBT 4 years ago at PHX Mayo, “6 months” shot lasted about 10 months. Gained weight, lost strength, hot flashes. PSA started at 11 came down to 0.2, and it stayed there ever since. Lupron was certainly manageable for me, but I know for others not so much. The folks at Mayo were great, I trust their judgment.

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@rcooley36

Any comments on hormone therapy pro/con after proton beam radiation.Cancer is contained in prostate and considered moderate.

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May help to give a summary of your clinical history. Generally, hormone therapy is given in conjunction with radiation therapy for several reasons:

To deal with micro-metastatic disease that is not treated with radiation and the treatment fields.
It does have a symbiotic affect

The duration can vary, for low and moderate risk, may be six months. For high risk, may be 18 months.

The side affects are well known though may vary by individual, overall health, physical condition and whether or not you are "active."

If possible, talk with your medical team, rather than say Lupron, consider Orgovyx, faster to castration, better at sustaining castration , faster recovery of T and lower CV SE profile.

Kevin

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@rcooley36

Any comments on hormone therapy pro/con after proton beam radiation.Cancer is contained in prostate and considered moderate.

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I started with a PSA of 4.7. My biopsy returned all 14 Gleason scores at 10. Many were counted twice that. Immediately got Lupron. 2012.. today.. 2023, I am still on Lupron and it still works. I’ve had radiation twice.
So your body can tolerate the Lupron and it can tolerate the radiation. You will still be moderately active and happy. I, especially hope you have a significant other to support you. If so, I think your life will be fine, the side effects are manageable. Be ready to lose your sex drive. My story obviously has an aggressive. . My story obviously has an aggressive and invasive prostate cancer driving everything and not going away. Many people go into remission, only a few do not. Good luck to you!

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@dirtdancer

I started with a PSA of 4.7. My biopsy returned all 14 Gleason scores at 10. Many were counted twice that. Immediately got Lupron. 2012.. today.. 2023, I am still on Lupron and it still works. I’ve had radiation twice.
So your body can tolerate the Lupron and it can tolerate the radiation. You will still be moderately active and happy. I, especially hope you have a significant other to support you. If so, I think your life will be fine, the side effects are manageable. Be ready to lose your sex drive. My story obviously has an aggressive. . My story obviously has an aggressive and invasive prostate cancer driving everything and not going away. Many people go into remission, only a few do not. Good luck to you!

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I am encouraged by your post stating that your aggressive cancer has been treated by Lupron for 10 years. I also have an aggressive and advanced cancer and I was on lupron and Erleada for 13 months along with surgery. My numbers are now low and my UCLA doctors have taken me off of all meds and checking me every 3 months. If the cancer returns ( which is my expectation) they say that they will put me back on ADT. As far as I am concerned, if an ADT treatment works for 10 or more years , I would be delighted. I am now 75. Thanks for your post.

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@hbp

I am encouraged by your post stating that your aggressive cancer has been treated by Lupron for 10 years. I also have an aggressive and advanced cancer and I was on lupron and Erleada for 13 months along with surgery. My numbers are now low and my UCLA doctors have taken me off of all meds and checking me every 3 months. If the cancer returns ( which is my expectation) they say that they will put me back on ADT. As far as I am concerned, if an ADT treatment works for 10 or more years , I would be delighted. I am now 75. Thanks for your post.

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Personally, I found that my cancer never really left, and when they took me off of Lupron and Zytiga, my cancer returned with a vengeance. So personally, I would stay on Lupron if you can tolerate it. The others maybe or maybe not depends on your situation. But going off of Lupron has caused me lots of issues.

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@dirtdancer

Personally, I found that my cancer never really left, and when they took me off of Lupron and Zytiga, my cancer returned with a vengeance. So personally, I would stay on Lupron if you can tolerate it. The others maybe or maybe not depends on your situation. But going off of Lupron has caused me lots of issues.

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Same here They took me off Zolodex and 2 yrs later had to have radiation to L2 lumbar Back on Zolodex for 2 year but now Xtandi is added

$4k a month but covered in Canada as I'm 78 over 65

Prayers

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@rcooley36

Any comments on hormone therapy pro/con after proton beam radiation.Cancer is contained in prostate and considered moderate.

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I had a Gleason score of 4+4; the cancer appeared to be contained in the prostate with no obvious 'puching' of the outer membrane. I chose PBT at Mayo/Rochester. They suggested a short course of 4 months of ADT (Lupron, I think). My understanding was the reason for the ADT was to add to the possibility that injured or damaged prostate cancer cells would not have the 'food' of testosterone.
I had reduced libido, increased ED and perhaps increased emotional lows (hard to distinguish ADT vs the middle of the pandemic).
Since then my PSA has stayed about .02.

ADT certainly has benefits depending on individual diagnoses and circumstances, but I (and others, I believe) might have benefitted with more coaching about the need for muscle strengthening /maintaining exercise and maybe emotional coaching. It was certainly 'different' to have my libido hit zero. Since the ADT shot has worn off, I've had some recovery of libido and ED. Not sure about muscle loss.

Hope that helps.

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@rcooley36

Any comments on hormone therapy pro/con after proton beam radiation.Cancer is contained in prostate and considered moderate.

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Gleason grade 4+3 with cancer contained in prostate. PSA level was 8.6 for 74 year old at date of cancer diagnosis. Decipher score of 48 and PSMA pet scan confirmed no spread. Decided against four months of hormone therapy due to potential side effects both physical and mental. Decision was related to quality of life in last remaining years rather than quantity of life. Proton therapy completed nine months ago and PSA level continues to decline in line with expectations. Prior to decision, read extensively about pros and cons of hormone therapy and made decision I felt was best for me. Obviously, time will tell.

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@rcooley36

Any comments on hormone therapy pro/con after proton beam radiation.Cancer is contained in prostate and considered moderate.

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@rcooley36, I hope you saw all the helpful comments from fellow members. Did you decide to go with hormone treatments after radiation? How are you doing?

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