Can You Stop Hormone Therapy? Alternatives to ADT for #ProstateCancer Mark Scholz, MD & Alex Scholz

Added: 2026-05-31

[00:00:00]In today's video, we're talking about alternatives to hormone therapy. Hormone therapy is quite effective at keeping prostate cancer at bay, but it also has varying side effects. And these side effects can really affect quality of life. So, many men are asking, "What can I do instead of hormone therapy? And are there other options?" Today, we're going to talk to Mark Schulz. He's a 30-year medical oncologist focusing solely on prostate cancer, and we're going to hear what those options are.

[00:00:29]Dr. Schulz, in today's video, we're talking about men who have been on hormone therapy for quite some time, and they can no longer tolerate the side effects, or they're looking for options other than hormone therapy because the side effects can be quite great at times. And so, obviously, it varies from person-to-person. Millions of men are on hormone therapy for prostate cancer, and as we know, both both first-generation and second-generation hormone therapies do lower PSA and, you know, keep the cancer in check to varying degrees. However, it is highly effective. So, when it comes to these side effects, you know, we're talking about fatigue, we're talking about joint pain, we're talking about weight gain, sleep, you know, hot flashes. It affects their sleep, their jobs, you know, the greater emotions that they feel. There's just so many varying issues. And um you know, for men who have been on it for quite some time, I think some of them feel like they're never going to get their life back, and then some start, and they just want to stop right away. So, what other options do we have?

[00:01:29]>> Well, generally, we're talking about men who are dealing with relapsed or metastatic disease when this conversation comes up. Certainly, the men that are newly diagnosed, there's a calculation that goes on about adding hormone therapy to, say, radiation to improve cure rates. In that situation, men have to balance off the improvement in cure rates that one can get by adding hormone therapy compared to the side effects of the hormone therapy. And if the improvement in cure rates is relatively small, some men can certainly just decide to skip the hormone therapy. And then if they do have to deal with a relapse later, then that uh is something that still may possibly be curable in certain circumstances. But I think what we were talking about more is the men who have been exposed to hormone therapy. Maybe they've had previous treatment or they have disease that's widespread and metastatic. Or perhaps we're dealing with men that have a situation like that and their hormone therapy has gotten them into a complete remission.

[00:02:27]Can they stop the treatment? And if the disease seems to be coming back, is there's an alternative to going right back on the hormone therapy?

[00:02:36]And this comes up in men that are on so-called intermittent therapy. The strategies that have been used to try and postpone or circumvent using hormone therapy in that situation have been spot radiation to metastatic sites. Now with PSMA PET scans, you can find where the cancer is and sometimes eliminate it with radiation.

[00:02:57]But what if that isn't working?

[00:02:58]Alternatives to hormone therapy in that setting, a rising PSA, known incurable disease, would sometimes be counteracted with some sort of immune therapy. There have been medicines approved for other cancers, Keytruda, Opdivo, Yervoy, that are widespread in their use and have been studied to some degree in prostate cancer with some benefit. They don't provide universal relief, but when men do get a response, the responses can be quite durable and the medicines often are well tolerated.

[00:03:30]So, the use of Opdivo, Yervoy, or Keytruda can be effective and allow men to keep their testosterone even if they do have so-called incurable or metastatic prostate cancer.

[00:03:46]There's a test out now called PrevUtox from the same company that tests for radiation toxicity called it makes a test called Prostox.

[00:03:55]And Previotox helps men in advance predict if they're likely to respond to Keytruda, Opdivo, or Yervoy, and also helps predict whether they're likely to have side effects. So, this is a useful thing considering that not all men are going to benefit from these immunotherapies. Some will, some won't, and the you can get some sort of advanced knowledge about whether they're likely to be helpful through the use of this test.

[00:04:17]>> So, starting from the beginning, if a patient walks in and their doctor has put them on hormone therapy, how do you think that conversation should go? Are there tips that you can give the patient on how to explain, "Hey, I want to get off of this." I understand that, you know, we're talking about two different situations, either not being able to tolerate it or the PSA is in check and they've been in remission for quite some time. The root of this sort of a conversation has to do with whether one believes in intermittent therapy or not.

[00:04:44]There's been some pushback on the use of intermittent therapy because fears that the metastatic disease is going to get out of control.

[00:04:52]And some of the physicians aren't familiar with the fact that there's been extensive studies looking at the safety of intermittent therapy and that taking a holiday and allowing the PSA to rise a little bit is not the end of the world.

[00:05:04]You can always in theory go back on the hormone treatment.

[00:05:08]But during that holiday period to initiate other forms of treatment that might be a substitute for ongoing hormone therapy would be a logical substitute. Before we move on, I just wanted to remind you to click [music] that subscribe button. It's a great way to support our channel and get these videos out to other prostate cancer patients and their families who need this [music] education. Now, also, if you would like to donate to PCRI, you can do so at pcri.org/donate [music] and support us financially. And this September, we have an in-person prostate cancer patients and caregivers conference. It's a great way to get your questions answered in person, [music] and you can learn more at pcri.org/conference.

[00:05:44]Now, back to my conversation with Dr. Scholz.

[00:05:47]So, we're talking about a couple of issues when it comes to these men um going in this process. So, there's access and talking to your doctor about it. There's access and insurance companies. Are they going to let you switch or cover the next treatment, which is a big financial concern for a lot of these patients? Um and then there's also the, you know, back and forth in the decision-making process with your medical team on really which one's best for you. So, starting with you know, talking to your doctor and saying, "Hey, I want to get off of these." If we're if we're talking about the practicalities of that, what is the next step? Is it they're going to decide on the next treatment? Is they're going to look at the situation and see if the cancer is stable and if they can stay off of it for a while? Like, how does that play out when they're in an office with you as a medical oncologist? First, people need to be aware of the doctors and the patients need to be aware that the manufacturers of these medications, uh which happen to be very expensive, have been very generous in offering compassionate use protocols where they'll actually give the medicine away.

[00:06:43]Merck Pharmaceuticals makes pembrolizumab, which is the other name for Keytruda, and uh the doctors can submit a request directly to Merck Pharmaceuticals to get free Keytruda.

[00:06:56]And the other two medicines that I mentioned, which are often used in combination, Opdivo and Yervoy, uh are made by Bristol Myers and they also have a compassionate use resource where people can contact the company and get the medicines provided to your physician for free of charge. It's really remarkable considering these are medicines are very expensive. Yes, I think compassionate care use. I mean, it's interesting. You can go to the company website and access those portals and submit there. Also, the doctor's office can do it through the reps, which is great. In those situations, have you ever seen a patient, you know, go from not being on hormone therapy, doing immunotherapy, and then having a cure or a durable remission? What are the expectations when it comes to those types of treatments? Now, I don't know about a cure, but I do know that the way people respond to immune treatments is quite different than the way they respond to say something like Pluvicto or Taxotere chemotherapy where you can get a nice reversal of the disease, but generally you can only continue Pluvicto or Taxotere for a period of time because there's cumulative toxicity. The immune medicines when they work, those can have an ongoing sustained effect, sometimes for several years. And uh yes, I have seen seen patients that have continued on these medicines almost indefinitely who otherwise would have to be taking some sort of hormone therapy to control their disease.

[00:08:11]>> Is the company giving it to them indefinitely at this time? Yeah, the typical protocol requires a renewal of the uh compassionate use protocol on an annual basis, but uh so far they've been very generous. So, the only technically FDA-approved immunotherapy in prostate cancer is Provenge. We're talking about non-FDA-approved even though they are I think Keytruda has been approved in like 16, 19 other cancers. So, how does one talk to your doctor? I think my concern is if you have a patient who's been on hormone therapy for a long time and you're in, you know, the average, maybe urology setting or oncology setting, it is not, unless you're at like a big center of excellence at these huge universities where they do where they are in touch with these companies, sometimes it can be hard for patients to have a conversation, talk their doctor into getting them off of hormone therapy, and then getting to the immunotherapy, and then getting access to it. So, my I think even the conversation with the doctors and with their medical team, I read time and time again in the comments section tends to be part of the blockage. So, would you encourage that they get a second opinion, they go to a large university, they maybe find another oncologist who's willing to work with their medical team?

[00:09:19]Like, if you had somebody in that situation, what would you have them do?

[00:09:21]>> Well, I think I'd just start with the introducing the idea of using one of these immunotherapies as an alternative.

[00:09:27]Uh the um doctors oh certainly are aware of this these products. There are very few medical oncologists that specialize only in prostate cancer. Most are doing treatment of all kinds of cancers and therefore familiarity with this medicine is widespread. So, yes, it is a little bit unorthodox to think, well, why don't we try it in prostate cancer, too? But, it's not a big stretch and the idea of implementing that becomes even more attractive when you find out that the barriers to getting coverage are pretty much handled by the generosity of the pharmaceutical companies. Let's say that this person that is um stopping hormone therapy is still hormone sensitive.

[00:10:05]And they go on these immunotherapies.

[00:10:07]Can they still go back to hormone therapy if the immunotherapies are no longer keeping the disease in check and is that still a possible backup plan for them?

[00:10:13]>> Yeah, I think this is what emboldens us to stop the hormone therapy in the first place is that many will see progression of the cancer, the rising PSA. Um if they get a PET scan, they may see new metastatic sites.

[00:10:25]But, the uh history of prostate cancer is that when men are stop hormone therapy when they're responding, that they will also respond when they reinitiate treatment. That's what gives patients and doctors the courage to take a holiday and is the basis of the whole concept of intermittent therapy. So, we covered these things lightly, but I just want to make sure I address them for those who have asked in the comment. So, what about going off of hormone therapy and only doing spot radiation or lymph node radiation if something comes up? Is that something that you do with patients or is it watching the PSA and then, you know, greater actions may be taken? Spot radiation has been far more popular than um say Keytruda or Opdivo or Yervoy. Uh this is easily widely available and radiation therapists seem to be quite comfortable with the idea. So, I mean, there's not too many metastatic sites. That has been our first initial thought for treatment in men who are dealing with a a metastatic site and uh as long as there's not too many of them, results have been excellent in many cases. Yeah, where where men can get good control of the disease and uh some even have been cured of the disease and and have not required reinitiation of hormone therapy. And in situations like that, I would imagine because hormone therapy is systemic running through your whole body and your system, it's keeping the PSA down. When it comes to spot radiation, you know, people are looking for these sites and obviously the PSA's rising, there's a site and then they radiate it. Are you having to monitor like every 6 months, every year in order to keep on top of this to make sure something new doesn't pop up or is it just a PSA? The beauty with prostate cancer is that we have now with PET scans and with PSA, men who for example have spot radiation to a metastatic site, their PSA should be dropping afterwards and if it's not, then that's a signal to get another PET scan and make sure there's not some new site of disease that needs attention.

[00:12:15]It's not ambiguous the way it was when we didn't have PET scans and we only had bone scans and CAT scans. That unfortunate situation of the past, scans were so crude that if you waited until something showed up on a scan, there could be cancer all over the body. PET scans are very accurate and sensitive and detection of spots at an early stage makes this idea of giving spot radiation attractive.

[00:12:39]>> To my understanding, 10% of men who have prostate cancer are not PSMA sensitive.

[00:12:43]So you have these men where the PSMA scan will not work. Are they still candidates to go off of hormone therapy and use other imaging modalities like Axumin or something that would pick up or is this maybe a situation where they need to be more careful because they're not PSMA sensitive?

[00:12:58]>> You have to test the waters. Axumin PET scans or C-11 PET scans are fairly good. They're not quite as accurate as PSMA PET scans.

[00:13:08]But when men take a holiday and intermittent therapy, this whole idea originated long before we had PET scans.

[00:13:14]And the reason that it's considered a reasonable consideration is because you can watch the PSA and then in years past, if the PSA was allowed to rise up to say five or six or something like that. Uh, men could reinitiate hormone therapy with optimistic expectations that the cancer will come under control again. That reality that that it is indeed safe to to do intermittent therapy because people will be watched closely gives us uh opportunity then to look at well, rather than just staying on hormone therapy forever, can I use spot radiation, could I use uh immune therapy, or some other type of uh non-hormone related treatment to try and improve my quality of life?

[00:13:55]What about in a situation where let's just say the patient wants to go off of hormone therapy, maybe immunotherapy is not something that is uh very accessible to them, or they're a little intimidated by the process, is chemo an option for them? When we talk about chemo, we're usually talking about taxotere, Jevtana.

[00:14:10]Most men perceive those things as having more side effects than hormone therapy and would typically prefer uh staying on hormone therapy. Also, the chemotherapies tend to only work as long as you continue them, so you're kind of committing to a very long-term uh exposure. There is a type of chemotherapy that can be somewhat more tolerable. Uh these are called PARP inhibitors, medicines like Lynparza, rucaparib, um and can be endured for more extended periods, and we have seen long-term remissions with PARP inhibitors. Men should, when they have advanced disease, should have genetic testing to see if they have one of these ATM mutations or BRCA mutations that uh suggest that these types of oral chemotherapies might be able to control the disease.

[00:14:54]If you're a patient who is considering talking to your doctor about stopping hormone therapy, there's a couple things that may be helpful to think about.

[00:15:01]Number one, getting another person on your medical team who may have some agreement or seeking a second or third opinion. I think a lot of times patients get connected with their doctor and they're in a relationship where they're fighting cancer. Maybe you've had that same physician for quite a long time, and you don't want to be disrespectful if they disagree. But if stopping hormone therapy is something that they're maybe um not thinking is a good option for you and you want to explore other options because of the quality of life issues that you're experiencing, maybe getting a second or third opinion on board is a good option for you. Now, if you're in an HMO, you may have to go with someone within the system and that may be a little daunting, but I would encourage you to speak up about what you're going through and if they're going to you know, continue to push being on hormone therapy, you know, make sure that you're speaking up to various options that you have, whether it's in an HMO system, seeing another doctor within that, maybe it's a PA, maybe it's a nurse, but dealing with things in silence in silence is just not great. We don't want you to not you know, have an option and we don't want you to suffer. And so it's really important to speak up about that.

[00:16:07]Another thing to think about is getting access to the immunotherapies that Dr. Scholl's talked about. Since they're not FDA approved in prostate cancer, how do you get access through compassionate care use? Usually it is the physician that goes ahead and contacts the company, but you actually can contact the company directly. So what you do is you look up the options for immunotherapy, you go ahead and Google the manufacturer, you look up compassionate care use or access and the FDA actually has a compassionate care use website or access you know, website as well and we will link those in the comment section below. And what you can do is contact them and say, "Hey, I would like to get access to this medication. Can my physician contact you?" What they're going to do is they're going to assign a case manager and what the case manager does is they check for eligibility and they're going to go ahead and request medical information from your doctor so that you guys can go ahead and look and make sure that you're eligible under their criteria and we've seen a lot of patients be able to get access to these immunotherapies in prostate cancer through these programs. And then it's given to you for free. Sometimes the medical offices do charge Medicare an administration cost for administering the immunotherapies, but a a of times those are covered, so it depends, Um, but I would definitely, you know, do your research, see if there's any hidden costs, but it has been really amazing to see that these companies are getting access for patients for from what we've seen an unlimited amount of time sometimes. So, it's really great to just check out those options, contact the company, and advocate for yourself. I know we're an advocacy organization, it is easier said than done, but it is so important that if you are going through something, you speak up. I think that's the entire theme of this video is that if you're somebody who's looking to get off of hormone therapy and into something else, you want to make sure to know what your options are, speak up about what you're experiencing, and fight for it cuz it is important. And it's also good to know that hormone therapy is an option for you after these types of medications. And so, thinking about, you know, what tools do you have down the line, what's your plan B, what's your plan C ahead of time, and having those conversations is very important. I'm also going to list some support groups in the comment section below because I think it's important to hear about other men's experiences. And if you have been a patient who has stopped hormone therapy or has started immunotherapy, any of those types of experiences, please leave them and leave your experience in the comment section below. It is so helpful for patients to hear from other patients what real-world experiences look like. Um, I cannot tell you that is one of the best things about our community, it's something we're so happy about. And thank you so much for all of you who leave comments and support us. We also would like to thank the user who left the comment in the chat because it was very helpful for us to develop this content. We want to make sure to be able to answer your questions directly. So, please leave your questions in the comment section so that we can continue to create videos just like this.

[00:18:50]Now, if you would like more information about anything that we talked about, you can contact us through our website pcri.org, but also talk to our helpline via the phone or by email, and you can reach them at pcri.org/helpline.

[00:19:02]They have a lot of information on hormone therapy and immunotherapies, and they will also be able to help. Now, don't forget we have a conference coming up in September. It is a great way to get your questions answered and also meet other patients who >> [music] >> have been on this various been on these various treatments in person and get your questions answered that way and I'll go ahead and link that in the comments section as [music] well. Please remember most of all you're not alone and I hope you have a great week.