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My ADT Story, Feedback Appreciated

Posted by ga73ds @ga73ds, Jun 13 7:32am

New here. First post.
I was diagnosed in Nov 2021. Gleason 9 and Decipher score also very high. Had surgery/prostate removed in Jan 2022. Had 7 lymph nodes removed also- 1 tested positive. So, I was stage IVa.
Began ADT with Orgovyz in January 2023 and radiation to the pelvic area in May 2023. I'm still on Orgovyz (for 2 1/2 years now). My PSA has been < 0.01 for 2 years since radiation.
PET scan prior to radiation showed a tiny area in the hip bone that was never confirmed as cancer or not but was cleared by the radiation. PETs have been clear since then.
My Drs want me to discontinue ADT now or at 3 years in January. I'm scared to do that. I've had no complications with Orgovyx so far. But, my understanding is that the longer I'm on ADT, the more likely the cancer may become castrate resistant and if that happens, the prognosis is poor?
I'm very happy with results so far and feel like I'm in good hands. I'm just scared. Should I come off the Orgovyx? What are my choices and my prognosis if my PSA starts to rise? Is it better to stay on ADT and take the risks associated with that or discontinue and take my chances?
Thanks and best regards.

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thmssllvn | @thmssllvn | Jun 17 3:42pm

17 June ArteraAi has announced that they can help predict which HIGH RISK non metastatic prostate cancers will benefit from adding Zytiga AND prednisolone versus ADT alone.

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ga73ds | @ga73ds | Jun 18 9:34am
In reply to @northoftheborder "They might want you to stop because while ADT can help hold off cancer progression, it..." + (show)
@northoftheborder

They might want you to stop because while ADT can help hold off cancer progression, it increases your risk of diabetes, osteoporosis, and heart disease, and can also put a strain on your kidneys. In my case, with stage 4b to my bones, they figure that the cancer-progression risk outweighs the others (plus my bloodwork and other tests show that I'm tolerating Orgovyx and Erleada well as the end of year 4 gets nearer); in yours, they might figure that the immediate risk of progression is smaller, so it might be worth giving the rest of your body a little break.

While there are studies supporting ADT holidays for earlier-stage prostate cancer right now, it's still as much an art as a science trying to balance all those risks for each individual patient. I told my care team right at the start that I was all-in for fighting the cancer (age 56 then, previously fit and healthy except for mild hypertension), and they've respected that wish by "throwing the kitchen sink at it," as they described it.

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So, what's worse-- continuing ADT with it's possible complications or stopping ADT and risk cancer progression/metastasis? Continuing sounds like the less risky choice to me and maybe the ADT complications can be treated? This is the confusion and difficult decision I'm having. Of course, maybe the longer I'm on ADT the more likely CR will show up? And I've read that CR makes the prognosis poorer.

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1 reply
jeff Marchi | @jeffmarc | Jun 18 10:33am
In reply to @ga73ds "So, what's worse-- continuing ADT with it's possible complications or stopping ADT and risk cancer progression/metastasis?..." + (show)
@ga73ds

So, what's worse-- continuing ADT with it's possible complications or stopping ADT and risk cancer progression/metastasis? Continuing sounds like the less risky choice to me and maybe the ADT complications can be treated? This is the confusion and difficult decision I'm having. Of course, maybe the longer I'm on ADT the more likely CR will show up? And I've read that CR makes the prognosis poorer.

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I know plenty of people that are CR and have been living many years, including me, for six years after CR diagnosis. The drugs that have come out in the last few years have made a big difference in this group. ARSI drugs like Zytiga and the lutamides have greatly extended The lives of people with CR. Used to be many didn’t live two years. I’m sure they live quite a bit longer now. My father died a couple years after Lupron failed him today he would’ve been alive many years longer with the ARSI drugs.

They are already testing a drug (Hopefully more than one) That you can take after the ARSI drugs fail. That would extend life even longer for people with CR.

REPLY
jimgaudette | @jimgaudette | Jun 19 9:41am

I took Lupron and Abiraterone with Prednisone for three years. I stopped nine months ago and all tests have been cancer free. The ADT side effects have only partially disappeared. I hope that as my testosterone returns to normal, the side effects go away entirely. If my PSA goes back up, I can always resume the ADT and get some more radiation ☢️ treatment.

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