Recurrent prostate cancer after 7 years

Posted by whatthef @whatthef, Sep 14 9:14am

My doc has suggested short term adt. ..Has anyone used short term ADT therapy. I’m concerned about the side effects.

I’m also considering proton therapy if I’m a candidate . Any thoughts

Thanks all!

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When I had radiation 12 years ago, they gave me A 6 Month Lupron shot. I had no idea what lupron did at the time. I had no noticeable side effects and didn’t realize they had given me a shot that could cause so many problems.

Nine years ago, I was put on ADT and have been on it since. I did take a short vacation figuring after eight years my Testosterone wouldn’t come back, But it came back pretty quickly Even though I was 77. So I went right back on ADT. I got a lot of hot flashes in the beginning, but that was really the only side effect that bothered me. Years later, I had to exercise regularly in order to keep up my muscle strength. I also have taken bones strengtheners for the last eight years. Some people get fatigue from ADT I did not.

Proton therapy is very useful for many people. It does have fewer side effects than photon therapy But in the long-term, the differences are minimal. A Stanford study showed that people who had photon therapy had a 3% chance of another cancer. Those who did not have radiation had a 2 1/2% chance of another cancer.. Not much difference there.

Proton therapy is done in five sessions. If your cancer is extensive, that may not be enough and you may need 20 sessions or so to treat it. It all depends on what it was found in your biopsy. One person in this forum recently mentioned that they were told they could not have proton therapy because they needed more than five sessions.

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@whatthef
I would also look at specific photon therapy that uses a built in MRI such as the Mridian or the Elekta Unity (vs fused images with Proton or other types of machines). Proton and other types of radiation machines generally use 3-5 margins versus an MRI guided photon radiation machine that has a real time built in MRI which allows the doctors to treat what they see in real time so the margins can be smaller (2 mm). I have not had a biological re-occurrence but I would make the same choice again, even if I had BCR and the radiologist was treating another area. Larger margins means more healthy tissue exposure and potential side effects and quality of life issues.

I would also add, that if there was a Proton machine that had a built in MRI, I would have chosen it. Because the proton machine does not have the safety features built into the MRI guided machines, the experience with Proton, as has been written on this web site, is different. Movement is a carefully choreographed issue.

I never had ADT.

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Profile picture for bens1 @bens1

@whatthef
I would also look at specific photon therapy that uses a built in MRI such as the Mridian or the Elekta Unity (vs fused images with Proton or other types of machines). Proton and other types of radiation machines generally use 3-5 margins versus an MRI guided photon radiation machine that has a real time built in MRI which allows the doctors to treat what they see in real time so the margins can be smaller (2 mm). I have not had a biological re-occurrence but I would make the same choice again, even if I had BCR and the radiologist was treating another area. Larger margins means more healthy tissue exposure and potential side effects and quality of life issues.

I would also add, that if there was a Proton machine that had a built in MRI, I would have chosen it. Because the proton machine does not have the safety features built into the MRI guided machines, the experience with Proton, as has been written on this web site, is different. Movement is a carefully choreographed issue.

I never had ADT.

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Thank you I’ll check it out…. The proton therapy is IMPT. Kinda new and very precise. Pencil thin and no access. The area I need radiation is in the retro aortic lymph node. Surrounded by organs etc. I am a little familiar with the MRI guided therapy… Also very precise and again not every facility has that particular equipment but thank you for all your input. You’ve been great..

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Profile picture for bens1 @bens1

@whatthef
I would also look at specific photon therapy that uses a built in MRI such as the Mridian or the Elekta Unity (vs fused images with Proton or other types of machines). Proton and other types of radiation machines generally use 3-5 margins versus an MRI guided photon radiation machine that has a real time built in MRI which allows the doctors to treat what they see in real time so the margins can be smaller (2 mm). I have not had a biological re-occurrence but I would make the same choice again, even if I had BCR and the radiologist was treating another area. Larger margins means more healthy tissue exposure and potential side effects and quality of life issues.

I would also add, that if there was a Proton machine that had a built in MRI, I would have chosen it. Because the proton machine does not have the safety features built into the MRI guided machines, the experience with Proton, as has been written on this web site, is different. Movement is a carefully choreographed issue.

I never had ADT.

Jump to this post

Actually, proton radiation has advantages. You don’t mention it’s not just the Margins it’s that they can centralize on specific tissue and don’t touch surrounding tissues.

Protons deposit most of their energy at the end of their path, a phenomenon called the Bragg peak, before stopping completely. This allows radiation oncologists to deliver a high dose of radiation directly to the tumor and then have the radiation cease, avoiding unnecessary exposure to healthy tissues.

Proton beams can be precisely shaped to conform to the exact contours of the prostate tumor, which is crucial for accurate cancer control and protecting nearby organs.

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Well said, thanks, I meet with the radiologist on Thursday I believe I’m a good candidate, we’ll see

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I also have recurrent PCa (tens years after prostatectomy) and will be starting salvage radiotherapy (EBRT) soon. No ADT even though two oncologists recommended a 6-month regime. My current radiation oncologist did not advocate for ADT.

I read a lot of medical literature trying to sort the ADT question. The main thing that I determined was that if you are in the intermediate risk category (I am) that adding ADT to RT has debatable benefits compared to the potential risks. Some doctors will not recommend it if your PSA is less than 0.5 because of this. There is risk of under-treatment, and risk of over-treatment, all depending. Can be a tough call.

So, if you are intermediate risk, I would say to listen to what the docs have to say, but make your own informed decision about ADT. I’m glad that I got second (and third) opinions. You really need to be the captain of your care team and evaluate your specific circumstances. Even then, it’s your best guess as to the risks versus benefits of ADT. Someone with my specific parameters might decide in favor of ADT. Very personal decision.

Btw, my post-surgical Gleason Score as 3+4. My current PSA is 0.1 (standard test), and 0.094 (ultra-sensitive test) and has not changed in 3 months. PET PSMA and MRI scans, as well as DRE, has confirmed a local recurrence (small nodule in the anastomosis) with no evidence of metastatic disease.

There’s my experience/situation. Hope this helps, and best wishes.

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Profile picture for melvinw @melvinw

I also have recurrent PCa (tens years after prostatectomy) and will be starting salvage radiotherapy (EBRT) soon. No ADT even though two oncologists recommended a 6-month regime. My current radiation oncologist did not advocate for ADT.

I read a lot of medical literature trying to sort the ADT question. The main thing that I determined was that if you are in the intermediate risk category (I am) that adding ADT to RT has debatable benefits compared to the potential risks. Some doctors will not recommend it if your PSA is less than 0.5 because of this. There is risk of under-treatment, and risk of over-treatment, all depending. Can be a tough call.

So, if you are intermediate risk, I would say to listen to what the docs have to say, but make your own informed decision about ADT. I’m glad that I got second (and third) opinions. You really need to be the captain of your care team and evaluate your specific circumstances. Even then, it’s your best guess as to the risks versus benefits of ADT. Someone with my specific parameters might decide in favor of ADT. Very personal decision.

Btw, my post-surgical Gleason Score as 3+4. My current PSA is 0.1 (standard test), and 0.094 (ultra-sensitive test) and has not changed in 3 months. PET PSMA and MRI scans, as well as DRE, has confirmed a local recurrence (small nodule in the anastomosis) with no evidence of metastatic disease.

There’s my experience/situation. Hope this helps, and best wishes.

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Like you I’m not a fan of adt… I still have my prostate, and my my original Gleason score was 3+4. Like yours. after the most recent PSMA Pet scan. It appears there are two lymph nodes in the abdomen area. They are lighting up.my oncologist recommended ADT right off the bat I declined. I told him I would like to look at other alternatives so I’m looking at proton therapy. It’s very precise. The side effects are very minimal. Hopefully I’m a candidate for this particular procedure and maybe it’ll get rid of it a cure verses palliative situation. Thanks for your input…..

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Profile picture for whatthef @whatthef

Like you I’m not a fan of adt… I still have my prostate, and my my original Gleason score was 3+4. Like yours. after the most recent PSMA Pet scan. It appears there are two lymph nodes in the abdomen area. They are lighting up.my oncologist recommended ADT right off the bat I declined. I told him I would like to look at other alternatives so I’m looking at proton therapy. It’s very precise. The side effects are very minimal. Hopefully I’m a candidate for this particular procedure and maybe it’ll get rid of it a cure verses palliative situation. Thanks for your input…..

Jump to this post

You should look up the patch trial. They use estradiol patches instead of ADT and they are just as effective over the long-term. They have many fewer side effects.

I’ve been on ADT for nine years. Yes, I have to exercise and do weight training regularly. I do get hot flashes, but have many solutions for them. I do not get any fatigue so I don’t have to worry about that not everybody gets it. You do need bone strengtheners I took Fosamax for 6 years and Zometa now. If you have a high Gleason score, it can make a big difference in overall survival.

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I had six month Lupron six years ago. minimal side effects and my testosterone returned to normal in three months. Several years later I had three years of Lupron and Abiraterone. The side effects became increasingly severe, but I have had no detectable cancer for four years. I am on intermittent ADT and have been off for one year. My testosterone is returning slowly this time.

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Other than "my cancer is back" I can find nothing about your clinical history. Pathology report, PSA tests results, any genomic tests, imaging...would be useful.

I, and likely others on this forum, have seen data that says MDT by itself may control advanced PCa without the need for ADT and may delay for some time the need for systemic treatment.

So, depending on your clinical data and particularly imaging results, MDT may be a good treatment to discuss with your medical team.

I mean, if you and your medical team go with MDT only, you can add systemic therapy if the results are not what you want.

There is also the possibility of "doing nothing" at this point and continuing to monitor. Again, may depend on your clinical history - PSADT, PSAV, GS, GG...I have seen some data that metastases can take up to eight years to "show up."

Again, discuss with your medical team.

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