My ADT Story, Feedback Appreciated

As far as I've read, ADT itself doesn't make the cancer become castrate resistant,* but it can cause long-term health issues like bone-density loss, diabetes, and heart disease, so deciding if/when to go off can be tricky. I was diagnosed a month before you with stage 4b (bone metatastic), and I expect to be on ADT and an ARSI for life, or at least until a better treatment comes along.

* Details (from a non-medical specialist): the more often cancer cells multiply, the more opportunity they have to accumulate mutations, so your best bet is to suppress them from multiplying in the first place; the reason castrate resistance often emerges after a few years on ADT is that the tiny minority of cells with mutations are the only ones able to multiply, and they eventually hit a critical mass where they become detectable. However, adding an ARSI like one of the -lutamides, together with aggressive radiation treatment to the prostate and metastases (or chemo if the metastases are widespread) can significantly prolong the period to castrate resistance, or maybe even postpone it indefinitely in some cases.

With the amount of time you have been undetectable, stopping ADT does make sense. Someone with a Gleason nine came to the advanced prostate cancer Ancan.org meeting A couple of months ago, He was 30 years past surgery and was starting to have his PSA rise. I know a number of other people who were Gleason nine and lived for decades without more treatment.

What you can do is stop taking ADT and get a PSA test every month for six months or so. Then you could go to three month tests. If your PSA is going to rise, it will rise in that time period And you can get back on ADT? It can’t hurt to find out if you actually are in remission!

Thank you for the insight.

I've read that castrate resistance typically occurs within 2-3 years of going on ADT. Resistance is defined as the PSA rising while on ADT. And like I said in my initial post, if the cancer becomes castrate resistant, I've read the prognosis is not good.

Right now, there's no metastasis that we know of. I sure wouldn't want coming off ADT to cause or speed up cancer spread.

To me, staying on ADT and risking those complications is better than having cancer recur. But, I'm told that ADT isn't going to stop spread? (So, why am I taking it?) But I know with my Gleason and Decipher both very high that my cancer is aggressive and the odds of recurrence is high.

I don't think my doctors will approve me going more than 3 years on ADT. So, it would be nice to know my options should my PSA rise. Seems risky to me to come off-- but they say say resistance and spread can happen either way......... 🙁

It is true that a recent study showed that It is possible to get Metastasis growth even though your PSA is undetectable.

If your PSA did rise after Stopping ADT you can get a PSMA pet test and zap whatever it finds with SBRT.

This is my sixth year after I became castrate resistant, I’ve been undetectable for 19 months and there Are more drugs for me to take to keep my PSA under control. Don’t get too paranoid about “if this happens it’s over”, Prostate cancer is very slow growing. You have time to beat it..

Cancer Medicine is a lot better and it’s getting better Almost every year, That’s one reason I’m still alive after 15 years with this cancer.

"I've read that castrate resistance typically occurs within 2-3 years of going on ADT. Resistance is defined as the PSA rising while on ADT. And like I said in my initial post, if the cancer becomes castrate resistant, I've read the prognosis is not good."

Yes, but I'm pretty sure that number refers to cases where the cancer is active and would have already been progressing during those 2-3 years without ADT (e.g. stage 4). The ADT buys you those extra years before progression, and with extra help (e.g. radiation, ARSI, chemo), may sometimes postpone it indefinitely.

If ADT "buys me extra years", wouldn't I want to stay on it? Seems to me the complications from ADT would be worth the extra time? I'm confused and don't understand why my Drs would think it better for me to stop? I've had no adverse side effects from Orgovyx and whatever they are or may be can't be as bad as my cancer coming back or spreading?

My Drs have taken an aggressive approach-- surgery+radiation+ADT, because the cancer has aggressive characteristics (Gleason and Decipher). I'm happy with the outcome so far. I'm just scared and don't understand why they're wanting me off the ADT.

Hi @ga73ds,

Welcome to Mayo Clinic Connect. You will meet many active members in the Prostate Cancer group. Mayo Clinic Connect is a place to share experiences to help offer support and share questions to ask with our provider.

As a reminder, no treatment decisions should be made without conversations with your providers, especially those pertaining to medications. Members can share what has worked and what they have discussed with their providers in the past that they found helpful, but stopping a medication or starting one should always be done in conjunction with your provider.

@ga73ds, when you had a conversation with your provider about stopping it, were they able to talk through the pros and cons of a rising PSA vs. long-term use of ADT? That seems to be a crossroads and it is certainly understandable why you may be scared and hesitant.

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.

When in your journey did you become castrate resistant? How was it determined?

I was 69 when diagnosed (stage 4a). I turn 73 next week. I've had surgery, raditation and 2 1/2 years ADT with Orgovyx. I am type 2 diabetic, have high blood pressure, and reduced kidney function (latest eGFR was 44). I'm on medications for everything.

I am not the least bit concerned about the possible adverse effects of ADT. I'd rather deal with that if and when it develops. I'd rather take the path that is more likely to keep my PSA where it is now (< 0.01) and delay or prevent metastasis.

Yet, I don't think my Drs will allow me to go beyond 3 years ADT.