Treatment options: radiation without ADT?

Posted by jcultra @jcultra, Jul 2 6:11pm

Researching treatment options.
79 yr old, sexually active, good health
Gleason 4+3, PSA 12.91 (tripled within last yr), Testosterone 435, PSMA PetScan No metastases, Decipher .95
Radiation oncologist recommended radiation with 6 months ADT.
Is there data or anyone who has not taken the ADT?

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@jcultra
You are going to find a lot of information coming your way. My question is do you have an experienced and knowledgeable medical professional that are testing and treating you? In the case of prostract cancer you really need a medical professional and treatment facility with latest tests, technology, treatments, research.

Question, Decipher test usually come back with low risk, medium risk, high risk. These risk refer to metassinging outside of prostrate and aggressiveness of your prostrate cancer. You listed 95 but were you told low, medium or high? If low there is usually only radiation not ADT. But even then some chose surgery.

Your PSA is high and went up very agressively in last year. With my limited knowledge leads me to agressive. Many outstanding faciliteis offer second opinions and can be done just sending your medical information to them to review. This what I did and a lot of others did. This gives you two views on test results, treatment options, etc. If they are identical or almost same good but if drastically different for me means more research.

Mine were identical. First I was told radiation and hormone treatments initially based on MRI, biopsies. Then had Decipher test done along with PSMA and bone scan. That changed the initial treatment plan to only radiation. I had that information transferred to another well know and respect prostrat cancer center which concurred radiation only hormone treatment was not necessary based on Decipher test, bone scan, PSMA.

Yours appears to be medium to agressive but I would still get second opinion which will help you determine the treatments options and a good second opinion. Colleen Young can give you guidance on second opinions.

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@clyman

Great news jcultra! You definitely were a benefactor of the latest advancements and sound collective decision-making. The Meridian protocol along with newer results on the questionable benefit of ADT for any type of Gleason 7, provided you with the very important benefit of no ADT! While rectal bleeding ney still present at some level years down the road even with Meridian, it appears appreciably less likely. You did your homework! All the best to you!

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I had a Gleason 7 unfavorable (4+3) confirmed by surgical pathology. I know of the recent studies concerning ADT with salvage radiation, but never heard that ADT is contraindicated in most cases of Gleason Intermediate. Can you post a link? I am meeting radiation oncologist at Sloan next week and I would like something to dissuade (ha!) him from putting me on hormones. Much appreciated!

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@heavyphil

I had a Gleason 7 unfavorable (4+3) confirmed by surgical pathology. I know of the recent studies concerning ADT with salvage radiation, but never heard that ADT is contraindicated in most cases of Gleason Intermediate. Can you post a link? I am meeting radiation oncologist at Sloan next week and I would like something to dissuade (ha!) him from putting me on hormones. Much appreciated!

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Hi Phil! Sounds like you had surgical removal of your prostate and the pathology confirmed Gleason 7 (4+3). I also assume that you have had a PSMA Pet Scan confirming the disease is confined to the prostate. Not sure the accepted Standard of Care protocol is exactly the same with respect to ADT administration for prostate removal vs SBRT Proton Radiation (which I had). But either way, I encourage you to watch the recent PCRI video narrated by Dr. Mark Scholz (medical oncologist) which addresses the newly published findings from a legitimate trial study regarding new thinking on the net benefits of ADT supplementation in the context of patients receiving radiation of the prostate. Dr. Scholz feels that the findings will ultimately lead to the standard of care for localized Gleason 4+3 prostate cancer to not recommend ADT as a part of treatment due to potential metabolic health risks of ADT not justifying fractional improvements in cancer recurrence or survival statistics. Because standards of care are slow to change and doctors rely on these to avoid future liability, I do not anticipate the new findings are going to be universally endorsed by individual urologists or radiologists. But the findings certainly do arm you with another legitimate discussion point relative to the ADT - No ADT decision. It will still be your decision but it might at least open up some true grit discussion that your doctors otherwise would be more casual or non-communicative about. If I had had the benefit of this new research in 2022, I am confident I would have foregone the 6 months of ADT. Just be assertive and don't rush a decision on ADT. It's nasty stuff on metabolic health no matter how good of shape you are in. I hope this helps.

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HeavyPhil,

Just tell the doctor you do not want hormone therapy. You are in charge of your health. That includes all treatments and their side effects. I told my dr no thanks and it was immediatly off the table.

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I would get another PSA . This last one was out of range, could be something else brewing. You have had yoru prostate removed already or ? ADT with External bean radiation ( EBRT) is common , however not in all circumstances . If the velocity is super high , some Dr's recombine it . Dont take it if you dont really need it , and keep it in the background if needed in future or 10 years down the road . Keep us in the loop . James on Vancouver Island .

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@clyman

Hi Phil! Sounds like you had surgical removal of your prostate and the pathology confirmed Gleason 7 (4+3). I also assume that you have had a PSMA Pet Scan confirming the disease is confined to the prostate. Not sure the accepted Standard of Care protocol is exactly the same with respect to ADT administration for prostate removal vs SBRT Proton Radiation (which I had). But either way, I encourage you to watch the recent PCRI video narrated by Dr. Mark Scholz (medical oncologist) which addresses the newly published findings from a legitimate trial study regarding new thinking on the net benefits of ADT supplementation in the context of patients receiving radiation of the prostate. Dr. Scholz feels that the findings will ultimately lead to the standard of care for localized Gleason 4+3 prostate cancer to not recommend ADT as a part of treatment due to potential metabolic health risks of ADT not justifying fractional improvements in cancer recurrence or survival statistics. Because standards of care are slow to change and doctors rely on these to avoid future liability, I do not anticipate the new findings are going to be universally endorsed by individual urologists or radiologists. But the findings certainly do arm you with another legitimate discussion point relative to the ADT - No ADT decision. It will still be your decision but it might at least open up some true grit discussion that your doctors otherwise would be more casual or non-communicative about. If I had had the benefit of this new research in 2022, I am confident I would have foregone the 6 months of ADT. Just be assertive and don't rush a decision on ADT. It's nasty stuff on metabolic health no matter how good of shape you are in. I hope this helps.

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Yes, had prostate removed 2019. Having PSMA PET this Tuesday actually. Even though I prefer not to have hormones I have to be realistic about the situation: Clean margins, nodes negative, vesicles negative….yet, it’s back…..or most probably it never left, right? So the bugger is persistent and could have evolved in time into something more aggressive. It scares me to think that if they don’t get it this time, my future will be totally hormone and chemo dependent with all the side effects you’ve all mentioned. And as was also mentioned, doctors are slow to embrace new thinking and tend to rely on tried and true (or not) methods to cover their asses.
Sloan is very much in this camp and follow their own time tested protocols to the letter.
I feel that if your initial treatment is radiation hormones may or may not be advised based on your Decipher score. My best friend ( Gleason 3+4) just had Cyberknife at Sloan and received NO hormones since his Decipher score indicated low chance for metastasis. I did mot have this test in 2019 so the docs probably have to err on the side of caution and overtreat. Just hope it’s 6 months and not longer….will keep you posted!

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@heavyphil

Yes, had prostate removed 2019. Having PSMA PET this Tuesday actually. Even though I prefer not to have hormones I have to be realistic about the situation: Clean margins, nodes negative, vesicles negative….yet, it’s back…..or most probably it never left, right? So the bugger is persistent and could have evolved in time into something more aggressive. It scares me to think that if they don’t get it this time, my future will be totally hormone and chemo dependent with all the side effects you’ve all mentioned. And as was also mentioned, doctors are slow to embrace new thinking and tend to rely on tried and true (or not) methods to cover their asses.
Sloan is very much in this camp and follow their own time tested protocols to the letter.
I feel that if your initial treatment is radiation hormones may or may not be advised based on your Decipher score. My best friend ( Gleason 3+4) just had Cyberknife at Sloan and received NO hormones since his Decipher score indicated low chance for metastasis. I did mot have this test in 2019 so the docs probably have to err on the side of caution and overtreat. Just hope it’s 6 months and not longer….will keep you posted!

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Hi Phil: The PSMA Pet Scan should be highly accurate (90% accurate) in pinpointing where the culprit might be - in the original prostate bed or elsewhere. My guess is that in a salvage radiation (post-surgery) situation, they will be pretty adamant about administering 6-months of ADT. That said, there are multiple new hormone therapies that have evolved that have less metabolic impacts than the traditional ADT (Eligard) that I had in conjunction with my proton radiation. You may have to pay out-of-pocket for it and be assertive with them to go in that direction but for sure let them know you want to know all the alternatives. On a positive note, a friend of mine had recurrence 5 years following proton radiation - had 6-months of traditional ADT with some targeted radiation and so far so good. The advent of the PSMA scan prior to surgery or radiation has been a game changer. And it will be your friend as well, because they will know exactly where to go with any salvage radiation. Stay positive! This is a lifelong affliction and journey for all of us but the advancements in the past few years are on our side Phil. Wait for your scan and go from there. It's easy. They give you a shot - you wait for half an hour for it to permeate your system - the scan itself takes a few minutes. All the best tomorrow. I just tripped off my dock today and broke my ankle so one more hill to climb! Just have to stay positive.

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Just about 80, no mets, not particularly high PSA relative to age and still sexually active? The tripling of the psa is a concern but wait another 6 months or so to get more clarity.

That is a NO to adt from me even with a 95 decipher.

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And just to highlight the inability of medical professionals to come to agreement on suitable treatments, here we have two patients:

OP: Radiation oncologist recommended radiation with 6 months ADT.
4+3, 79 years old, PSA 12.91

Me: Radiation oncologist recommended radiation with no ADT.
4+3, 61 years old, PSA 17.50

How can we as patients expect to get it right when the pros don’t agree on best solutions?

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@clyman

Hi Phil: The PSMA Pet Scan should be highly accurate (90% accurate) in pinpointing where the culprit might be - in the original prostate bed or elsewhere. My guess is that in a salvage radiation (post-surgery) situation, they will be pretty adamant about administering 6-months of ADT. That said, there are multiple new hormone therapies that have evolved that have less metabolic impacts than the traditional ADT (Eligard) that I had in conjunction with my proton radiation. You may have to pay out-of-pocket for it and be assertive with them to go in that direction but for sure let them know you want to know all the alternatives. On a positive note, a friend of mine had recurrence 5 years following proton radiation - had 6-months of traditional ADT with some targeted radiation and so far so good. The advent of the PSMA scan prior to surgery or radiation has been a game changer. And it will be your friend as well, because they will know exactly where to go with any salvage radiation. Stay positive! This is a lifelong affliction and journey for all of us but the advancements in the past few years are on our side Phil. Wait for your scan and go from there. It's easy. They give you a shot - you wait for half an hour for it to permeate your system - the scan itself takes a few minutes. All the best tomorrow. I just tripped off my dock today and broke my ankle so one more hill to climb! Just have to stay positive.

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Yup, totally right on. We’ve all worked hard all our lives to get to this stage and if I can afford it, I’m not gonna let $$ get in the way. I already payed out of pocket ($7600) for a pre-op Auxumin PET in 2019 because ins co said not necessary. But I wanted to know if anything had spread BEFORE I faced the robot, because if it had already gotten out I would have done hormones and Meridian at Weil Cornell. Thanks for all the encouragement!

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