Hello, all. There is a lot of knowledge in this forum. Please let me ask this age-old question once again, to see what percolates up here. Many thanks for any wisdom on this.
It's the question of whether to stop ADT after six months, instead of completing the two-year course prescribed by my MO and RO.
5 1/2 months into ADT (Orgovyx/relugolix), I want to stop after finishing this bottle (month 6). I am high risk, localized (PSMA PET and bone scans found nothing, Gleason 4+3, pre-treatment PSA 44, current PSA 0.24) and I had RT, including lymph nodes. My MO says the evidence shows that finishing the two years of ADT will give me a significantly higher probability of surviving ten years. I'm 59.
But I see several recent studies that show it's not so simple. They indicate that six months is certainly a good idea but continuing to complete a full 12, 18, or 24 months may have no benefit when the patient's PSA has reached a nice nadir (0.06 ng/mL or 0.5 or 0.3, depending on which study you look at. I'm looking at 2022 study by Ayoub, et al, and a couple of 2012 and 2013 studies by D'Amico and by Zelefsky.) There are other relevant studies, one by Zaorsky, arguing for 19 or 21 months being optimal and better than 24 due to worsening quality of life. A review by Anderson (2022) says continuing ADT after six months has only a small benefit.
When I ask, "Can't I just go back on the ADT if my PSA rises?" My MO and RO say it isn't so simple. RO says the cancer cells, if any, will have gained ground on me by then. MO simply points to the data on long-term survival again.
I wish to stop because of fatigue and muscle loss and concern about other bad side effects rearing their heads. It is difficult for me to imagine completing two years. My MO says he will continue to support me medically if I take this decision, even though he advises against it.
My conclusion is that I am in a gray area. It's not clear cut. At this point it's a matter of placing my bet. Neither option is clearly the more prudent one. I am about 80% the way toward deciding to stop ADT.
Any tips, advice, wisdom, recent journal article refs most appreciated.
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JustJimmy
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I went with SOC. 44 IMRT to whole Pelvic bed and 2 years ADT. I didn't like it at all. In the beginning I thought it would never end, same for those 9 weeks of radiation. I got into a routine, walked, worked out and had a one day at a time mentality. Before I knew it my 2 years were finished. I'm now 8 months done and I feel great. I also feel that by doing the deed I've extended my life which I cherish so much.
You could get a Natera test (assuming you had a biopsy). It wouldn't be conclusive but it would be some evidence. I had one a few weeks ago. It came back negative, which is good but not conclusive. Now that you're off ADT, I would put more weight on a negative result if you got one. Taking the ADT off the table removes a question mark as to whether it might be keeping any cancer cells in a dormant state and not shedding DNA. Then again, even a positive result might only indicate that your immune system is killing any remaining cancer cells, so not conclusive. But interesting, nevertheless.
Enzalutamide without a prescription - onlinecheappills.com/enzalu... Enzalutamide immediately halted the doubling of my PSA level and has, in 3+ months, reduced the PSA from approximately 400 to 5.7! I am feeling MUCH better and functioning MUCH more normally.
it does do better the longer you do ADT but there is always the question of whether you are just keeping the cancer in abeyance due to keeping testosterone at below castrate levels. Or whether the radiation really does kill the cancer off better with the ADT for longer periods of time. i'm not sure there is really truly a way to know that for sure other than the studies that seem to indicate a better result for a longer term of ADT. you could just make an executive decision and say I'll do a year. I mean, this stuff is up to you. Doctor of course are going to cover their ass and request you do the maximum.
Au contraire. Based on my sample of 1, my doctor suggested I need not "do the maximum." ADT/abi stopped early due to excellent response -- any remaining benefits outweighed by LT side effect concerns. Its not the doctor's arse that is at stake here.
Oh, i get it. i did the same thing. But to be scientific, you have to follow the guidelines of the studies and the studies pretty well set out you do better by a longer term. But everything is a choice and every personal decision you make takes into account your own personal factors, not just the study's OS benchmarks.
Would you stop an antibiotic for a bacterial infection earlier than prescribed? Of course not. If you go "80% of the way," You would be selecting the most resistant 20% of bacteria and encouraging them to take over.
It sounds like you are following the POP-RT protocol. Resist the urge to tinker. It's not a "gray area" -- we have a protocol that is proven to work, and you want to imagine a protocol with no proof.
PCa is different, because whatever we do Darwinian selection always rears its ugly head and finishes us off - unless we pop our clogs before it gets that far! If we had a therapy which killed it off totally, like an infection, that would be great.. Just not available yet.
I agree that in terms of anti-cancer efficacy you follow the protocol - (while keeping overall health and comorbidities in mind). But the protocol offers no wisdom on what to do if the protocol is poorly tolerated. I have had really bad experiences with ADT/ARI's - PRES, hyperlipidaemia, weight gain, muscle loss, brain toxicity (spatiovisual impairment/cognition) the whole shooting match. Am 79 in April and I regard every year over 80 as a bonus.
So keeping physically fit as I possibly can (healthy weight, weekly gym, daily 2K, weekly 5K) and enjoying each day as it comes is my primary goal. And I have agreed with two experienced oncologists that intermittent ADT, hitting it each time PSA exceeds an arbitrary figure (around 1.0) is a good alternative to the "protocol" given my experiences and my wish for good QOL.
It is worth just taking a glance at the abstract of these straws in the wind:
Intermittent versus continuous androgen deprivation therapy for advanced prostate cancer. Marlon Perera et al Nature Reviews Urology volume 17, pages469–481 (2020)
Intermittent Androgen Suppression for Rising PSA Level after Radiotherapy. September 6, 2012 N Engl J Med 2012;367:895-903. DOI: 10.1056/NEJMoa1201546. VOL. 367 NO. 10
The use of intermittent enzalutamide dosing in the treatment of metastatic castrate-resistant prostate cancer. Journal of Clinical Oncology. Volume 38, Number 6_suppl. doi.org/10.1200/JCO.2020.38...
Thank you for this information, Doc. My medical oncologist and radiation oncologist were dead set against my suggestion that we move to intermittent ADT of just the kind your oncologists agreed to. The MO said after I quit ADT, if the PSA rises he would treat this a fresh case of possible recurrence and not consider it as time to start up on ADT again as part of a predetermined plan. He had good reasons, namely, Why make and stick to a plan? When the PSA rises, you decide what to do then (watch it for a while, see whether it goes back down, perhaps get a scan, etc.) I can see the reasonableness of both sides on that issue. Thanks for citing those articles.
This DocSceptic is misinforming you, and telling you what you want to hear. It is exactly like antibiotics in that a shorter duration causes a worse infection.
Also, you are NOT taking intermittent ADT, you are taking ADJUVANT ADT. It is limited term, and the side effects that troll mentioned are not the same side effects.
I don’t need to look it up. Yes I know and agree there is a clinical difference in purpose between using adt as adjuvant vs intermittent.
But the same difficulty concerning resistance arises with both uses of adt - which is that adt, although it may extend survival, is not a curative “killing” or cidal agent . This is different from eg using cytotoxic drugs as adjuvants, as they do at least have the potential to be curative in other cancer contexts.
When a bactericidal antibiotic is used in correct dose and duration it is curative. And yes, if used for too short a time or too low dose before killing is complete, then that risks therapeutic failure and emergence of resistance. The classic example is TB. But this is categorically not the same as using adt as a cancer suppressive agent.
But to return to the “Darwinian” evolution of resistance to adt, because adt is suppressive not cidal, resistance can eventually emerge though natural selection in the tumour population whether it is given as adjuvant or as intermittent long term therapy. So in that respect adjuvant adt is different from antibiotic failure. Additionally, there is uncertainty about the optimum length of adjuvant suppressive therapy required to achieve improved outcomes after surgery.
So I conclude that given the uncertainties, why shouldn’t an individual decide to stop adt (adjuvant or otherwise) because they find the side effects too unpleasant? It should be their informed choice.
No, it is not " the same difficulty concerning resistance arises with both uses of adt - which is that adt, although it may extend survival, is not a curative “killing” or cidal agent ." In fact, adjuvant ADT has cured patie nts, whereas intermittent ADT has cured no one, and isn't expected to.
You are quite wrong and there is no clinical evidence to back up your statement that "because adt is suppressive not cidal, resistance can eventually emerge though natural selection in the tumour population whether it is given as adjuvant or as intermittent long term therapy. So in that respect adjuvant adt is different from antibiotic failure. " Just as with antibiotics, where many are bacteriostatic, not bacteriocidal, the immune system does the remainder of the clean-up work, in radiation oncology ( which you seem completely ignorant of yet have strong opinions) there is an abscopal or bystander effect that kills whatever is left behind. That is why the recurrence rates are so low after the POP-RT protocol.
When you write, "Additionally, there is uncertainty about the optimum length of adjuvant suppressive therapy required to achieve improved outcomes after surgery." That may be (although there is much more data that you don't acknowledge), but it is irrelevant -- the OP hasn't had surgery!!
"It should be their informed choice." But reading your post only supplies misinformation.
The difficulty with your statement that adjuvant adt has “cured” patients, is that it is impossible to tell in any one individual what resulted in this “cure”. And in this context what constitutes cure? Is it survival until something else gets you or a 5 year cure??
Were the cured patients those who would have survived without the adt anyway ? All we can say is that adjuvant adt improves duration of survival for a large group over a defined period. Which of course is good. But we still end up with this fog of uncertainty as to what happens in the individual.
I don’t want to appear argumentative but there is too much dogmatism in this area and a failure to acknowledge uncertainty when it comes to the individual. Good trials help find the optimum survival for the group but at the individual level there is sufficient uncertainty to allow for informed personal decision making.
On a more light hearted note the only person I know of who really offers cures us the Pope!!!
I don't know which standard model your country follows, but in th US most follow the NCCN guidelines.NCCN guidelines are based on the model first proposed by D'Amico in the last century. There are other models and reasons to change it, but it has held up well, and the reasons to not change it still exceed the reasons to change it. It is based on the correlation between PSA, T stage, and Gleason score and the risk of 5-year biochemical recurrence (5YRBCR). D'Amico chose 5YRBCR because it is a good indicator that the treatment will have a long-lasting effect. In the longest term trials we have, that has proved true. All statistics predict for the group median, not the individual -- but it is foolish to bet that you are markedly different from the average guy.
For someone who claims that he doesn't want to appear argumentative, you certainly do. Remember, no one wants to take his medicine, and child-like, they are looking for any reason not to. Because of your agnorance, you are giving permission to the worst instincts. Be careful! This is peoples lives you're playing with.
Thank you TA this actually is so succinct and wise. In one quick post you just opened my eyes wide. I’m entirely rethinking telling my docs I’m done next month. Thank you,
This forum attracts men with advanced prostate cancer who are on lifelong hormone therapy. Unfortunately, men like JustJimmy also post on this forum and take advice from men on permanent ADT. They are led to believe that the side effects and goals are the same as adjuvant ADT.
People come to this forum for help and understanding. And because the forum is indexed on Google, they might find a post or threads from this year or last year or whatever that attract their attention. I find this problematic because sometimes people are treating this forum as a dialogue with friends and friends want to be helpful and kindly. But and the contacts of being helpful and kindly, sometimes the information shared is less than helpful.
One of the problem topics that keeps coming back and is the idea that one can be cured of prostate cancer after it has metastasized. And that taking a holiday from debilitating drug therapies may be a legitimate option, in some circumstances. It's not.
Generally speaking, my understanding is that once we have metastatic prostate cancer it's more or less a terminal diagnosis. The literature doesn't even support the idea of it being maintainably chronic yet, although one can hope.
And there's always the confusion between prostate cancer that is confined to the prostate, that is to say not metastatic, and metastatic prostate cancer. Lazy journalists and fundraisers like to confuse the two.
Non metastasized prostate cancer is something that one might very well live with until the end of a normal lifespan. But this is not the case with metastasis. It's an ongoing battle. And some people have a longer horizon and some people have a shorter horizon. And science seems to be moving forward and one becomes optimistic. But it's still always there and always pursuing its own agenda.
I'm fortunate to have reached 3 years so far, in reasonably and good health, although with fatigue. If I didn't have the advanced therapy regime I enjoy, I probably wouldn't be writing here today.
With this perspective then, my decision making is focused on what I can do to maybe extend the success of my current therapy. It's a framework that does not include any fantasy about returning to normal as in "life before diagnosis".
Please remember, only about 25% of patients with prostate cancer die of it while 75% die with it and die of unrelated causes.
You say taking " a holiday is not legitimate". Perhaps you did not mean it quite like that, but it is just wrong to say it. I don't believe anyone here is indulging in fantasy about "life before diagnosis", we are all trying to navigate difficult and sometimes unanswerable questions to which is there is rarely a dogmatic response.
It really is up to each individual to decide what they wish to tolerate in terms of s/effects, time and money spent on doctor visits, tests etc in exchange for extra years, or months of life.
DANGER WILL ROBINSON! Doctor Skeptic is sharing dangerous misinformation!
** WRONG** "Please remember, only about 25% of patients with prostate cancer die of it while 75% die with it and die of unrelated causes." ** WRONG**
This comment only applies to men with prostate cancer that is not metastasized. I emphasized in my earlier post above the importance of making this distinction when a diagnosis of metastasis arrives. (The statement I'm criticizing is just crazy confusing anyway, because we don't know what the start point is. All prostate cancer starts in the prostate, duh. And then some prostate cancer occurrences are diagnosed before metastasis and some prostate cancers are diagnosed after metastasis, or very much after metastasis, even at Stage 4.)
Don't forget this forum's name is the Advanced Prostate Cancer forum! And until maybe 5 years ago a diagnosis of advanced metastatic prostate cancer gave one a lifespan of a year and a half or two. A terminal diagnosis. Because of the new generation of therapies some men might hit four or five years if they are lucky. It's very uncertain. And it's even exciting because we don't have "endpoints" reflected in the statistics yet for men who have started advanced New generation therapies in the last few years.
It gets more complicated though. Because apparently up to 1/3 of men with advanced metastatic prostate cancer die of heart attack and related CVD problems. And what is meant by this is that these endpoints are caused by metastatic prostate cancer therapies and are over and above the heart attacks etc that one might get anyway.
It took me probably a year to realize that I was completely wasting the precious time I had left by attending regular prostate cancer forums, either in person or online. Because unless the forum says it's about advanced or metastatic prostate cancer, it isn't. And there wasn't a single person, layperson or doctor, that suggested the difference was important.
Your statement is a cliche repeated ad nauseam by lazy journalists. And the price that is paid is paid by men with metastatic prostate cancer who think that what is said about non metastasized prostate cancer is relevant to them. So often it's not. And precious time is wasted. And wasting time with misleading information on this forum is a crummy thing to do.
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P.S. - For members of this forum that didn't grow up in North America, the phrase "Danger Will Robinson!" is what the friendly family robot would say to one of the members of the Robinson family on the hokey TV show "Lost in Space". This was in the 1970s I think. The phrase is now a meme - sort of for people who might not know what a meme is 😂
I'm with you on the disbenefits of therapy, Doctorsceptic. Strangely although I am on advanced hormone therapy I never had surgery or radiation. Reading a lot of posts here it just seems I really avoided a lot of destructive side effects.
Now if we can resume polite discourse, I have no problem being corrected when I make a mistake, but politely please. Not with shouty capitals.
I happen to agree that the effect of cardiovascular morbidity from therapy is not emphasised enough in asssessing the right decision for the individual. That risk rises with comorbidities. Good trials and protocols are fine but the specific patient needs and comorbidities should be taken into account when making recommendations.
On the question of dying with or from, the stats refer to all patients. I am in the incurable bone mets category and have had a whole bunch of drug side effects, some serious, I am now pretty focussed on quality over quantity and believe patients should be given as much info as possible rather than pushing a one size fits all protocol.
Patient autonomy over decisions should be respected and that means doctors should be frank about benefits and dis- benefits for each individual patient.
"And that taking a holiday from debilitating drug therapies may be a legitimate option, in some circumstances. It's not."
It's possible I am shortening my life, but here's my brief history:
RP Jan 2012. BCR Jan 2016. Metastatic to 2 thoracic nodes 2019. Began ADT May 2020 with PSA 5.7. One month later, June 2020 PSA <0.064. Began vacation May 2021. June 2021 and forward PSA <0.064.
PSA undetectable until Oct, 2023. Negative PSMA scan June 2023. Dec 2024 PSA 1.00. So now approaching 4 years on vacation. So almost 4 years with no drugs, no docs, no side effects, no nothin'. Will be 84 in Sep. Patient at a leading prostate cancer center.
I think TA would agree with you, but so far he's been kind and hasn't sent me any hate mail.
For what its worth, I’ve been on ADT for over 4 years now. The first 6 months were the toughest and then I sort of got used to it. As you know exercise is the key to avoiding some of the side effects like weight gain and fatigue. I know my life will never be the same as it was but I’m still alive. I’ll probably be on this for the remainder of my life. From my position, 2 years doesn’t seem like a big deal but we are all different. This whole journey is a bit of a crap shoot for us all. In the end, we don’t want to have any regrets. I told my MO, as he was the only one in the room with a medical degree I guessed I would follow his advice. Good luck with whatever you decide.
A Gleason score of 7, 4/3 is on the more aggressive side. Mine was 7 3/4. To go off of ADT allows the cancer to grow. Even staying on the ADT you will likely find that over time the cancer will begin producing it's own testosterone. Going off of of ADT gives the cancer a foothold while you cant see it.Yes there are side affects, all of us who are on ATD have them. But it is the ADT that is giving us time now. Enjoy life, and find ways to help with the side affects instead of going off of what is giving you time.
This is my viewpoint of where I am, after being on Orgovyx 5 years now. It is working, and I praise God for every day.
There are conflicting reports as to whether you even needed ADT with that kind of gleason score. Nobody knows for sure whether it's really working or not. If it makes you feel better, that's all that matters
Stage 4 with abdominal Mets. Entering 5th year on the same ADT therapy, with no changes in PSA or T. I’m staying on it until changes show growth in tumours or Mets develop elsewhere. Stay with it is my advice
So I was G9 at diagnosis in 2015, BCR in 2016 at which time (63yo, partner deceased, no offspring) I opted for QOL over duration. My PSADT is 10-12 weeks and I'm persisantly oligeometatstic, so much so that on my first SBRT my RO rang six weeks later thinking they had mistargetted.
Single therapy ADT (Zoladex) currently cuts my PSA from 4 to 0.3 in 3 months. Yes, the nadir has increased from undetectable over the last 8 years so the increase TA is concerned about is very mild in my case. My MO doesn't want to add darolutamide in case it invalidates future treatment optons. Gently, gently.
I am more taken by the Moffitt Centre work (Gatenby/Zhang) on evolutionary dynamics of cancer cells than any clinical study. Why? Partly my training as a mathematical statistican and information scientist. TA's comment above is about a monoculture elimination.
Gattenby et al posit an always mixed structure of cancerous cells. Eliminate the easiest to kill and you provide more fuel for the next hardest etc. In cancer treatment this is SoC.
Curiously I have for a long time come to the same view - Darwin always wins. If therapy could eliminate PCa early before any mutants appeared then Darwin would lose. Sadly that is not the case.
Three plus years ago, when I embarked on a self directed adaptive Bicalutamide scheme, I had no _whatsoever_ knowledge of Moffit, Gatenby et al. It was just the obvious thing for me to do.
Thank you for this information. By the way, I think you and I are reasoning similarly regarding family. If my wife were deceased, I would certainly stop ADT at six months. One of my main concerns is that I not die before her.
You must look at how many guys stop or take a break only to find the beast returns. It will, has anyone found a cure for this, no, definitely not.Your treatment is killing off cancer cells, it's not a bout of flu. You either take the side effects or you take the cancer, it's simple.
I started ADT at 56 years old, I'm 68 years old now, never took a break and never will.
I was on Orgovyx for 9 months, asked to stop it because of the side effects and the studies indicating that efficacy after 9 to 18 months was questionable. I feel much better without it, we are monitoring my PSA as it has not quite been a year yet but so far so good. I was G7 4+3 and one G8 but PSMA PET scan showed no spread, had 44 IMRT sessions. PSA has slowly risen but that is to be expected, will closely monitor it ongoing and if MO really thinks its necessary I will consider resuming. But so far so good.
I honestly wish you well, each of us has a journey, yours is different to mine. But not entirely different. I think that although we all have this cancer, somehow, we don't follow the same trajectory.
The results that you have are very encouraging , I'm glad that you continue to monitor.
Please keep us informed how you progress, hoping for the best.
Please show study / studies where somehow efficacy for Orgovyx was questionable compard to other ADT and in what sence are the efficacy questionable ?
Please provide real studies. Saw for example a very questionable were they looked agonists compared to antagonists until 2019 and the problem with the study was that Orgovyx was not approved 2019 and even so the amount of patients using Orgovyx in that study was extremely minimal and could not provide any statistical results
Hi that’s a tough question. I have not read those papers but will try to find time over next few days.
Meantime there is the broader philosophical question about the balance between quality and quantity of life. The doctors don’t have to live your life and in the end you are the master of your fate.
The statement that “the cancer will have gained ground on me by then” is not very helpful. Each time it comes back, the real question is whether having breaks in therapy alters prognosis in the long term. (Probably minimal based on one NEJM article). The other key question is how much recovery of T and symptoms you will have between courses of intermittent ADT. You won’t know until you test it.
I will share my experience but I am older than you (79 this April). I had radical in 2009, local radiotherapy for recurrence and PET +ve bone mets 2012, and then in 2022 ADT and enzalutamide (side effects) then apalutamide (side effects) and stopped the lot after about 6 months. PSA started rising again December 2024 and is still only 0.4 having been <.01 and has followed same trajectory. I was not keen to have continuous therapy with ADT and ARIs and got second opinion from experienced oncologist. Final decision is that I am as likely to die with it than of it so am going to have intermittent ADT whenever my PSA hits 1 printing it stops working. I plan to ask for estradiol patches as these avoid some but not all of the effects of T suppression and is equally effective (PATCH trial). When or if that fails I will then decide whether to have abiraterone plus prednisone. Might have had a cardiac arrest before that happens. It’s all a juggling act and the trial evidence only takes you so far in making personal decisions.
While its true modeling p cancer intervention on treatment for bacterial infection differs, the point made above is that one must look at the biomarkers and radiographic evidence, using an expert to determine when to take a vacation.
Looking at the studies of sequences and the difference between mono doublet or triplet therapies may be instructive, using criteria of pfs, radiographic fs, and os.
Based on what Ive read, if one has bone mets, then one needs consistent doublet or triplet therapy.
Their is also, plenty of evidence that SBRT , darolutamide and ADT and/or docataxel will keep PSA down. One should also look into Xgeva or Zometa to reduce "skeletal events" from bone mets. If the thinking is genetic, then maybe genetic testing would indicate special meds alongside.
The D'Amico and Zelefsky are in the weeds. The Ayoub was what most interested me. I have a couple of PSA tests this month, having reached 0.24 one week ago. If I get into the low nadir ballpark that Ayoub is talking about, then his study suggests that additional ADT (beyond 6 or beyond 12 months, depending on the result) is unlikely to offer me much benefit. Any thoughts on those papers, please let me know.
Looking forward to reading your comments. As someone who is almost 80 I do find that perhaps we may have already come to grips with our mortality and that makes decisions much easy.
Our senior citizen gym group have a New Year’s Day tradition. In the year you turn 80 you are given a baseball cap that says Limited Edition and the year you were born.
Ha! I have such a cap! I have come to grips with my mortality. I paid no admission price to this show, and when the usher comes to tell me it's time to go, I will have not grounds for complaint. It has all been free of charge. I'm very grateful.
I was pleased to read JJ’s question because I had been thinking along much the same lines, so thanks to everyone who has replied below.
I’m approaching 6 months on Orgovyx + Enzalutamide, ie combination therapy. I have had localised RT on my principal lesions. I’m approaching a PSA nadir, so I wanted to go to Enza mono therapy for a while, monitoring PSA.
When people talk about ‘stopping ADT’ do they mean stopping Enza etc too? I’m somewhat confused.
My onc won’t prescribe me Enza alone, by the way, and basically takes the view expressed by Tall Allen below that it’s belt & braces - and for as long as can be tolerated / it’s effective.
I am high risk localised G9(4+5). I have been following the SOC - 37 sessions of RT + 2 years of ADT which started in Dec '23. My PSA is <0.006.
I had toyed with the idea of cutting ADT to 21m - i.e. last prostap injection in June '25. However, although I would love to get off ADT, I do tolerate it relatively well with no hot flushes, no weight gain and preservation of most muscle with a lot of exercise sessions. For the sake of 3m, I have decided to go the full whack and have the last injection in Sep '25. I would forever blame myself if I had BCR and had only done 21m. If I do the 24m and get BCR, at least I would feel I had followed the full treatment plan and given myself the best chance.
If, over the next 6m, new data comes out then I would think again.
Thanks for the reply, MarkS. Just in case you're interested in the 21/19 months optimum (rather than longer terms) suggested by Zaorsky: The articles I mentioned in my post are "Optimal Duration of Androgen Deprivation Therapy..." Int J Radiat Onc Biol Phys 14(3) Supplement, 2022 and a similar one that is on urotoday.com and found by searching for Zaorsky Optimal Duration of ADT.
Thanks, JustJimmy. I had previously printed off the Zaorsky paper and studied it a few times, together with a paper by Mark Storey. They come up with 19/21 months as optimum. That may possibly be correct. However, I'm not sure there's enough good quality data out there to come up with a definitive optimum number. As I'm doing relatively OK with the ADT, my risk of dying from it should be less than the average. This means my optimum period on ADT may be longer than 19-21 months - i.e. 24 months.
There's another iADT trial for metastatic patients going on right now too. In addition to Dr. Choudury's A-DREAM at Dana-Farber, Google the "De-Escalate EORTC 2238 trial" to find it.
I'm not enrolled in A-DREAM, but I'm following the parameters under supervision of my team. My last shot of ADT was in August, last Nubeqa pill Dec 31st, with PSA and T testing every 6 weeks for the first 6 months, and scans in May or June. I'll keep everyone posted.
Best of luck. Not only did I start my "trial" in June 2022, I'm now using T supplement b/ c my T did not recover. Almost to the low end of normal now. Glad to see that other trial has a goal of many more participants.
I finished my 24 months of ADT after RT. If you don’t like fatigue and muscle loss, there’s a well known detour: exercise, both CV and weight lifting, and diet. It’s not getting better, if you stop ADT and your cancer cells might just loving it. Just my opinion.
Thanks, Nusch. I am an exercise fiend, so I have that covered. Let me tell you how bad the fatigue was. Working full time (job on my feet doing what is equivalent to light gardening level of exercise) I was too tired to work out. I had been working out religiously for 25 years. So, the fatigue was very bad. I stepped down to part-time work a couple weeks ago, losing my health insurance policy, tightening my belt, etc. Now I have enough energy to work out. This is a consideration weighing in favor of continuing with ADT for a while longer.
If you decide to continue ADT, I would strongly suggest using supplemental estradiol patches or gel/creams to mitigate/eliminate hot flashes and mitigate/eliminate osteoporosis due to having essentially zero estradiol when chemically castrated.
Also, you may want to consider following the PATCH phase-III tE2 protocol, which demonstrated that you can safely and effectively replace Lupron ADT with estradiol patch ADT and have the same safety profile and survival probabilities as traditional ADT.
When doing estradiol ADT, studies have also found that blood glucose and bad cholesterol levels are lower, while good cholesterol levels are higher.
The main downside of estradiol therapy is mild to moderate enlarged breasts and breast sensitivity. You can look up the papers by Ruth Langley et al. on the PATCH trials in Google Scholar.
This is an excellent point. One thing weighing against this point is the two papers on nadir PSA being "low" (<0.5 or <0.3) by D'Amico and Zelefsky I mentioned. Mine is 0.24 at 5.5 months But those two papers by no means a refutation of your point. (The paper by Ayoub does not count against your point because it used a nadir of 0.06, which I assume counts as undetectable.)
Another consideration is that healthy prostate tissue also can cause there to be some PSA. My MO said this the other day when I raised a similar point to yours. He said it's possible that I am cancer-free now and have some healthy prostate tissue left after the RT causing a detectable PSA. There is no way to know, of course, so this consideration, too, is by no means a refutation of your point. (My MO wouldn't even agree that it's okay to stop now ADT even if the PSA were now undetectable, so in his view it's a moot point anyway.)
I just stopped Orgovyx after 10.5 months. I discussed the studies you referenced to support the decision to stop before the originally specified 18 months. My RO was very familiar with them and he started my meeting by saying "you can stop now". However, I had 28 sessions of RT including the nodes but - and the papers discuss this- I also had LDR brachy, and 6 months of ADT was not inferior to 18 months or longer. (He did not think 6 months was sufficient, BTW) I'm not where my files are located to give specific information so this is from memory. Check them and I think you'll see the shortened durations were due to the brachy.
Thank you for this info. The papers I mentioned were not for brachytherapy patients but for RT-only patients like me. The brachytherapy paper you must be thinking of is Yorozu, et al, "Results of a multicenter, randomized..." J Clinical Onc 41:6 2023.
As you can see from the responses, there is no definitive answer,..
My experience, my choices, in concert with my medical team.
When I did triplet therapy, the starting plan was six cycles of Taxotere, 24 months of Lupron and WPLN radiation, 45 Gya spread out over 25 treatments. There was discussion about adding an ARI.
As we progressed, based on my response to the ADT and Taxotere, we decided the ARI was not needed. After about a year, I discussed with my medical team coming off the Lupron at 18 months versus 24 based on various clinical trials looking at 6 vs 18, vs 36. They agreed. Keep in mind, my PSA was undetectable in the first three months, a key data point in determining statistically the probability of a durable remission.
That triplet therapy brought a five-year remission, T returned quickly.
April 23, PCa is back. Again, the discussion with my medical team. We agree on SBRT to the lone lymph node identified in the scan, what we don't agree on is the length of ADT to deal with the micro-metastatic PCa too small to be seen by imaging. My going in thought was si months, my oncologist's thoughts were 24 months + ARI (EMBARK).
After some thoughtful and deliberate discussion, we "settled" on 12 months of ADT (Orgovyx), only add the ARI is PSA did not drop to undetectable in the first three to six months and at 12 months, re-visit our decision and decide whether to continue the ADT to 24 months or comer off and actively monitor.
We did not add the ARI and came off treatment at 12 months.
Was our decision the right decision in either case? We'll never know what the additional time on ADT would have meant to the outcomes, What I know is we made the best decision with the clinical data we had, and my medical team and I were comfortable with our decisions.
As others have said, mitigating the side effects of ADT is possible:
Exercise
Diet
Managing Stress
If the hot flashes are extreme, talk with your medical team about medications to mitigate those.
I am in the camp that generally believes advanced PCa is not curable, at this point in time.
I believe it may be manageable with a wide array of treatment choices, though not for all (I had a friend pass this year after only 12 months from diagnosis).
Part of the decision also is the length of time off treatment and the rate of T recovery.
I mean, you're basically saying Whack a Mole is a bona fide approach. I tend to agree. The idea is to keep it at bay as long as you can without using ADT if you can. If you can't, you can't. But if you can, why not try it?
You have obviously made a big effort to have a better understanding of the benefit of extended ADT following RT. Have you discussed the Zaorsky paper with your Docs? I think it is undeniable that the marginal increase in benefit from longer ADT duration plunges as a man passes 12 months of ADT.....most dramatically seen when looking at overall survival curve. For remainiing free from detected metastases, longer duration of ADT is more beneficial...The curve actually shows lifetime ADT would be the best choice. Yet for overall survival, that is not true!!
I notice many in this conversation are referrinng to ADT use when already metastatic, but I understand your situation is that you are non-metastatic and concerned about the duration of ADT after "curative" radiation? Some of the top PCa Docs express their uncertainty about the 24 mo current SOC ...and new trial are underway testing the value of "just" 12 months. As to your particlar case there are some studies that have found a PSA nadir of I think < 0.2, or perhaps even closer to undetectable, are good markers for a successful long-term treatment......if you haven't reached that low nadir, maybe even more important to continue the ADT?
Deciding to do less than 24 months is in no way a guarantee that the pCa will metastasize/kill you!!
Thank you for this excellent reply. Right on point.
1. I was going to mention the papers to the MO the other day but just packaged the idea in terms of stopping early. He was 100% against it and we had a nice discussion. I should have mentioned the papers. I will ask for a phone visit.
2. Yes, I was given "curative" RT/ADT. My docs are aiming for a cure because the scans found no metastasis. I apologize if posting here is inappropriate but the forums for high risk PCa seemed dormant and I noticed that others in this forum had posted on high risk PCa.
3. Yes, what you said about nadirs, I agree. On the other hand, the Zelefsy and D'Amico papers say that there is something to the 0.5 or 0.3 nadir.
I'm considering going another six months for a total of twelve.
I quit at 9 months. RO tried to get me to go to 1 year, presumably based on what Maley said. I told him I had a lower testosterone to begin with and it may never come back as it is. To which he said "you're probably right." So I just made an executive decision. So, that's on me if it comes to that. ME. not anybody else. I accept that. Plus there was this guy here a few years ago that is dead now and I remember reading that he thought being on that ADT made his cancer worse. Super good dude, I still read his blog occasionally, but I don't think he was right about that-he had neuroendocrine cancer unforunately, and that is the worst of the worst. tominmotion.blogspot.com/ But I just wondered about that statement. Anyway, for me, been about 4 years ago since radiation, clear PSMA last year, even with supplemental testosterone taking it up to over 1000 occasionally. Decent PSA that spikes a little with the extra testosterone but nothing major. Might still be lurking in there somewhere, but again, that's on ME. And this decision is on you.
I don't claim to know the optimum nadir that predicts a better chance of cure.......sometimes common sense is wrong, but common sense would lead me to hope for the lower, the better. Yes, 12 months provides a great deal of maximum ADT benefit IMHO. I'd ask the Doc if he could provide any source that would show the degree of additional benefit beyond 12 mo. I'm heading toward 12 mo(Gleason 4 +5, PSA 13 at time of treatment) and the new MO i've seen not interested in discussing this duration question with me......in his opinion, with 4+5, more the better.......and it seems that is true when considering only deterring detectable metastasis, which is definitely something to be desired. I'm borderline osteoporotic at age 76, and that is what really concerns me re ADT. I'm dealing with the hot flashes(flushes???)...bothersome, but not enuf to discontinue something that might give me more than 1 year of additional quality life!! I suppose I should search for someone here in Portland who is open to possibility of estrogen replacement via those patches.....don't like the idea of even larger manboobs though!! i have stalled on the use of prescribed Fosamax pills to try to deal withthe weak bones.....supposedly weak????? Those pil have low but not zero risk of jaw necrosis!!! OMG!!! we can't win with these drugs...each one presents us with new health risks?
Hmm. the smell of that Columbia steelhead grilling in the kitchen is calling me. You have elicited quite a response!!
There are studies which point to a PSA nadir of undetectable as an important clinical data indicating better progression free survival when stopping.
In retrospect, had my PSA not dropped to undetectable in the first three months of both treatments, we would have added the ARI and gone the full 24 months.
The disease is too heterogeneous for any of us to give you any advice on stopping that would assuredly guide you, In the end, no matter how open minded you try to be, it is not only Darwin but confirmation bias that rules.
You want to stop, ok. There’s plenty of expert medical opinion that supports it. There’s also plenty of hard data that supports staying the full course.
However, past 6 months to a year at most, side effects often put a man in your position. They are indeed uncomfortable, but the health consequences of the resulting co morbidities are the real issue. Overall survival endpoint markers for a longer life on ADT mean little if you hasten the advancement of say, heart disease. Which of course kills 10 times more men annually than prostate cancer in the US alone.
On the other hand, I would not be talking about intermittent casually if I had a realistic shot at cure, which you may.
Intermittent means just that: off and on for life. It also means with each ‘break’, the respite from side effects is less as return of testosterone (if any) is lessened. The breaks also become shorter. Relief from sides becomes more placebo effect, possibly in exchange for giving the disease opportunity.
Yet this is all well worth it if you are metastatic. If not, your first shot at eradication is always the best one, and ADT can be the difference maker. Again, you obviously can’t know for sure.
What you do know (hopefully) is the state of your physical health. How much do you exercise and what kind? What co morbidities do you either have or are at considerable risk for? IMO these are a much better guide than anecdotal evidence and confirmation bias when making this all important decision.
They were for me: I stopped early in September of ‘21 and have been free of recurrence since I did.
Absolutely nothing can predict success or failure in this. Regardless, it is impossible to overstate how important a combination of both weight bearing and cardiovascular exercise is to your decision. Your ongoing fitness and strength is a more valuable metric in your favor any other.
Excellent reply, London. My health, aside from PCa, is excellent. I do weight lifting and some pretty plyometric (explosive bursts) calisthenics, plus long walks every day and plenty of yard work. This had been my lifestyle for about a decade, and before that I also did a lot of running. The ADT knocked almost all of that out of me. I didn't have the energy. I therefore stepped down from full-time to part-time work last week and am now back to my exercise routine, having enough energy.
JustJimmy. Its hard to weigh in without your bio info...dont know what treatment you had so its hard to pass on my research. If you can fill that in it would help.
But, if your PSA is not going down with ADT, and 0.24 as a nadir is high, then stopping ADT may not be in the cards. Of course, if you had Radiation Treatment (RT), then this may explain this PSA; again the need for bio info.
So if you can fill in your bio we can better aim our joint research at your questions. TNX Rick
Thanks, Rick, I did put the RT in the original post. I had pretreatment PSA of 44, no mets found by scans, went on ADT, had RT of prostate and lymph nodes, PSA kepts descending until current 0.24 of last week. I will look for the nadir ASAP. Perhaps I have not yet reached it.
Something that most do not consider or know about is that castrated men live significantly longer than noncastrated males, 13-14 years. The main theory behind this is that low testosterone causes it. And the longer you live, the more likely you will be cured.
I agree with you jedimister. While personal autonomy is important, and also quality of life, I think it’s important to remember that our physicians are medical experts and work with them on our treatment plan. I appreciate people’s experiences here, and think this forum offers a great deal of helpful information. I I agree though with a point I think tall Allen made earlier in that we have to be careful that we’re not trying to create a plan that fits more with what we desire than that which is part of an evidence based standard of care. Good luck to you as I know that dealing with side effects and trying to maintain a good quality of life, along with managing this difficult disease, can be so challenging.
Following up on what janebob99 wrote above, you might explore with your medical team the option of using high dose transdermal estradiol (E2) for ADT. The data on that option are just now coming out and it is admittedly still an off-label treatment. However given what the STAMPEDE team in the UK has presented on it in the last few months at ESMO and ASCO-GU, it is certainly something you could discuss with your MDs.
The were experimental (pre-clinical) data published a decade or so ago suggested that high dose E2 can reduce fatigue. Also, as a form of ADT, with tE2, you'll have few, if any, hot flashes and bone mineral density is likely to be better maintained than on the standard ADT drugs. And there is some circumstantial evidence that E2 may also be somewhat cognitively protective and preserve libido to some extend.
I can provide more information, but I prefer to discuss E2 with individually via voice or video, and not on chat lists with folks hiding behind pseudonyms. [Also I am a slow typist.]
Contact me individually if you wish to discuss the pros and cons of using tE2 at high dose (for androgen suppression) or at low dose (to mitigate side effect of the natural loss of E2 with standard ADT).
Thank you, Richard. I am indeed concerned about cognitive decline. My MO says he has patients who believe that ADT has cost them a few IQ points. Not that I am worried about it leading to dementia, but I very much do not want to lose any IQ points at all because my vocations and hobbies require all the points I have now. I will think about this and get in touch. Jim Ryan
I have been on Firmagon and Xtandi for five years and my PSA has been <.01 for the time period. Only thing I would even think about changing would be from Firmagon to Orgavyx. Even still I’m not willing to rock that boat.
UPDATE: I just spoke with one of my docs about a thought I'd had and which maley2711's reply here chimed in on: Why am I not continuing ADT until nadir is ascertained (hopefully just a few months) and then reconsider stopping? This makes more sense than stopping now, looking at the Ayoub article I mentioned.
I was on Orgovyx for a couple months and experienced mild side effects, mood disorder, hot flashes, cognitive decline, and, of course the two effects unavoidable with any ADT, muscle weakness and libido loss.
Based on multiple studies (I will send you the list if you send me your email address. The document is 12 pages long, including an introduction and some graphs, etc.) I switched to estradiol. My fatigue lessened and the moodiness, hot flashes and mental fog went away. Trade-off for gynecomastia, some body hair loss and mild acid reflux is tolerable.
Estradiol is not Standard-of-Care and not approved by the FDA. But evidence is mounting from well-performed clinical trials, the latest being the 15-year PATCH trial in the U.K. which presented findings at the September 2024 ESMO Congress (European Society of Medical Oncologists).
My PSA is fluctuating between 0.020 and below measurable 0.014 ng/mL (the lowest the VA lab seems able to measure) since October 2024. Testosterone below 20 ng/dL consistently.
Other side effects, which take longer to manifest themselves, are yet to be validated but my lipids and glucose do seem to be marginally improved. I will have a bone density scan done in April to compare with the scan I had one year earlier in April 2024 the week before starting ADT.
Lost_Sheep (If I don't respond to a direct message right away, try again. My sklls with this forum are not the best.)
P.S. It makes sense to me about ADT before radiation can help the radiation be more effective. ADT after radiation makes a bit less sense to me. But this remains indisputable: ADT is not curative; radiation might be.
Hey good question, and that's up to you, know that the body will assimilate and use any drug you take, and after a period of time develop a tolerance to it where it's become less effective, on the same note the body develops ways to combat cancer cells or any mutations on its own as well. My personal experience, I've been on elegard holiday as they say 3 years, and on nilutimide (ADT) for 13 years of and on at my discretion, my numbers rise a little last year then went back down to 0.012 or something like that, which is non detectable. I had a big muscle loss this year and found out I have hyperthyroidism which drive my BP and made me diabetic. I haired ALL meds when I got to 155lbs down from 185 in August, that's when I found out about the thyroid issue. My Dr. Said to stop all meds which I had, nilutimide, statistins, lisinipril, aspirin, vitamin D3, metformin, synjardy and a few others. Needless to say I was upset when they told me Graves Disease basically hyperparathyroidism. Anyway now I take a thyroid med to keep it in check and rest a processed sugar free diet mostly, oh I have my cookies and cake sometimes but not every day or week, no milk, while grain bread and little carbs, reverse osmosis water, no alcohol or soda, so it's been a challenge but worth it. As for sex drive let's just say it's not that important for me at 67, I've had more than my share and some of someone else's of poompoom over the years🤣🤣🤣well, love n Light my friend, stay calm, be focused and live.
My husband had a PSA of 46.6 and Gleason 9, Aug 2023
No spread on scans.
He was recommended to have two years or more of ADT( Orgovyx) and two years of Abiraterone…and radiation to prostate only..his PSA has been consistently <0.10 since 3 months after he completed radiation . He is being treated at Mayo in Phoenix.
He decided to go off Abiraterone Dec 2024 after 12 months, due to concerns re: cardio toxicity. He has a growing aortic root aneurysm and moderate to severe regurgitation in his aortic valve … he is being monitored closely by cardiologist (s) and is most likely going to need open heart surgery sooner than later .
We are considering whether he would be less at risk during surgery if he is off Orgovyx .He has been on Orgovyx for 16 months. He has a cardio oncology specialist, and an aortic clinic cardiologist …. And RO and MO
Obviously he will look to his medical team for recommendations in the next few months and we want him to have a consult with a cardio thoracic surgeon soon.
His MO is fairly non committal … he didn’t counsel my husband one way or the other about stopping the Abiraterone when we met with him last December… pretty much saying that it was up to my husband.
He also appears to be skeptical that the original treatment plan will be curative… given the aggressive cancer diagnosis. He assumed the cancer was systemic at diagnosis.
The heart issues have certainly complicated making PCA treatment decisions.
Wow, you are speaking exactly my thought Jimmy. 40 days from wrapping up the six month ADT end or treatment after Radiation, R. Prostatectomy. It’s truly taking a toll now on my muscles, strength, sleep, overall it takes you down a notch or two and I’m working out every other day, biking, surfing, walking. Another six months and I’m F’Up’d for certain. On Orgovyx too and this is supposed to be the better of ADT approaches so I’ve heard. Hope you find the direction to head in next that you’re confident with it and that the end result is successful for you.
Ken, two updates to my original post. I have just dropped down to part-time work from full-time. (The work is on my feet, equivalent to light gardening.) This has cost me ($$$, health ins policy, etc.) but I now have enough energy to work out. This has been a game changer. I still end up just as tired by the end of the day (too tired) but at least I have my workout regime back. Second update is that I have decided to continue taking ADT a few more months (hopefully just one or two) to find my nadir PSA. If I find it soon and it's low, then I plan to stop ADT then or maybe continue until month 12 is finished, depending on how low the nadir is and when it arrives. Will keep you updated. Glad you're working out.
If you look at the data from the STAMPEDE trial high risk localized prostate cancer patients did better with ADT + abiraterone + RT showing a survival benefit. The downside was 3 years of ADT. You might not meet the criteria of this trial-I think it was PSA>20, GGG 4/5, T3/4 and Mets assessed by conventional imaging but you certainly are high risk and localized. The other important predictor is aberrant histology. Unfortunately the side effects from ADT as you know can be difficult. Good luck
My thought is ADT is a systematic treatment to suppress cancer growth as other treatments (Chemo, Radiation) work to kill cancer cells. Because PCa is heterogeneous, I also agree that a strong treatment at the outset is your best shot for cure/durable remission. Since I had one positive pelvic lymph node and one suspected bone met, I think I'm a bit higher risk than you, so I stayed the course of 24 months of ADT. Not pleasant, but do-able. I think your decision is tougher than mine was.
I've now been off treatment for almost 1.5 years and undetectable since 3 months into treatment (3.25 years) . I don't know if I'd call my stopping treatment "intermittent", because if I have a recurrence, ground may indeed have been lost and I'll also be forced to throw in the "possible cure" towel. Then decide on any treatment duration, including possibly permanent ADT. At age 62, I want quality, but I need quantity too!
Hi I started treatment when my psa was 7. (2008 at age of 55) in Birmingham UK. Had radical prostatectomy (leaving me with an incotinence problem) and radiation after. Started ADT in 2022 , (for 20 months total. Started with Zolodex only for first 5 months the Xtandi was added but swapped for Abiraterone/ prednisolone after 5 months because of intolerance. So the last 16 months of ADT was Xtandi then Abiraterone and Pred on top of Zolodex . All treatment stopped 7 months ago. Psa undetectable for last 16 months and as was-the serum testosterone
Still trying to recover strength and Hb levels but going well so far
I could tolerate the Xtandi ( giving me nightmares). It appears the Abiraterone finally brought the psa levels to undetectable ( < 0.008 ug/l )
so this was your primary treatment of your prostate cancer in situ with addition of RT to pelvic lymph node fields (not SRT after BCR). Low pretreatment PSA with SRT after failure of primary treat (RARP or EBRT) appears to only require 6 months of adjuvant ADT. However with primary treatment RT I am not sure how this might apply. PSA of 44 would not qualify as low.
I too have much difficulty with ADT and had significant harm to my body when I first had a 6 month shot. So I discontinued it. It took a long time to reverse my sarcopenia with obesity muscle loss and bone (osteopenia), subsequent lumbar spine problems, and depression with cognitive impairment. Fortunately, all these have resolved. But it highlights that ADT is not innocuous.
So when I had recurrence in pelvic lymph nodes and required SBRT , I found two ROs consulted were not at all concerned about prolonging ADT. They agreed 4-6 months may have some benefit with RT, but felt that would be enough for me. The SBRT was completely successful in clearing the LN mets.
Now I have been on modified BAT for 3 years since SBRT and Lu radioligand treatment. I take ADT (Orgovyx with Nubeqa) for only one month, every fourth, after three months of Supra-physical testosterone. I remain with undetectable PSA.
I support your personal decision not to continue ADT beyond six months. It is quite reasonable. Paul /MB
Hi Jimmy. I have been refreshing my stale memory of the area and looked at the papers you mentioned. The trials have evolved over the years and reporting of results has been in different formats and therapy variations.
However, I think we can safely say the following:
1) Adjuvant ADT has most benefit in the first 6-12 months, after that benefit tails off gradually in terms of PCa recurrence.
2) The reporting of 'overall' survival is patchy (as opposed to PCa specific mortality) with most reporting metastasis recurrence or PCa mortality as an end point. Maybe I have missed them, but I could not see any charts giving a full accounting of patients as the trials progressed. For example were dropouts taken out of the equation? I worry about the increased risk of cardiovascular events so your history and fanily history are relevant.
3) One useful meta-analysis of adjuvant ADT (12 trials) reported overall benefit in terms of metastasis free survival over 10 years. Prolonging ADT from 4-6 months to 18–36months favoured prolongation (Hazard ratio HR 0.8). They are careful to state - “magnitude of the benefit could vary and shared decision making with patients is recommended.” Androgen deprivation therapy use and duration with definitive radiotherapy for localised prostate cancer: an individual patient data meta-analysis: AU Kishan, et al, The Lancet Oncology, 2022
4) I have taken just one study (TROG 03.04 RADAR study) which favours ADT to calculate “number need to treat” (NNT) which might help give you a better perspective as HRs are not very patient friendly. 1,071 patients were enrolled, median follow-up 10.4 years.
Prostate cancer-specific mortality was 9.7% for intermediate-term (18months) versus 13.3% for short-term (6 months) ADT, (hazard ratio (HR), 0.7).
To achieve that benefit you would have to treat 44 patients (ie NNT 44) (maths needs double checking) to prevent 1 patient dying from PCa. They do not give all-cause mortality and in discussion, they state that “the bulk of the survival benefit seems to come from the first 4 to 6 months of ADT administration; the absolute benefit derived from the extension of therapy is comparatively small (3.8% at 5 years in EORTC 22961 and 2.6% in RTOG 92-02).”
Here is your quandary:
The numbers in item (4) are only intended as a representative example of a study which favours adjuvant ADT. But using this example, and given your experience of ADT side effects what would you be prepared to tolerate for the next 18 months in order to be the one patient in 44 who avoided a PCa related-death over the next 10 years?? Dont forget that 6 months ADT has already given you useful benefit so the figures would be better than that. Only you can answer that question with the help of your oncologist.
I think you should ask your oncologist to quantify, in terms you can easily understand, the extra benefit he thinks you as an individual might get and the chances of achieving it with prolonging the ADT. NNT is not a bad way of looking at it. And pin him down on all cause mortality rather than just PCa specific mortality.
I hope that helps, and as I always say, ultimately you are in charge and you must make sure the trade offs of therapy are worth the benefit to you as an individual. Carpe diem.
Thank you for this reply, Doc. These are all good points. As for the "ultimately you are in charge" point, I put it like this: Doctors are not in charge of risk management. They are not probability theorists or risk management professionals. The patient is the one in charge of risk management. If the patient is poor at risk management, doesn't know statistics or is poor at probabilistic reasoning, then it is prudent to leave the risk management up to others, such as his doc.
My onc put it to me last week something like the following. He recommended that I stay on ADT for something like (he didn't have the exact numbers in front of him at the appointment) a ~25% smaller chance of dying by year ten, which he emphasized meant that if 40% of men who stopped at 6 months were dead (all causes) by year ten, then only 30% of men who continued to the full two-year course would be dead by year ten. He admitted that this marginal benefit was not enormous (60% vs 70% chance of ten year survival, all causes). Again, these are the rough numbers. He didn't have the exact ones with him. They dovetail with the cancer-specific 9.7% vs 13.3% you cited.
You and I agree that there are men in the two-year ADT group who would be better off stopping at 6 months (or 12). The trouble is discerning which men those are, which Ayoub. tries to do with nadir PSA. The risk management task for the patient is to judge the probability that he is in that group, including other factors such as the family history of heart disease you mention, and other things henis doing to mitigate his risk of recurrence and benefit his health.
Much to consider here, thank you. I'm not sure whether you saw my post in this thread announcing that I now plan to continue ADT until I ascertain nadir PSA, hopefully this month or next, and then decide. That is certainly incumbent on me if I put any creedence on Ayoub's paper.
Thanks. You had better get someone to check my NNT figure - don’t rely on it!! I always worry a bit as I don’t have someone to check thus stuff for me. Anyway it’s only meant to be an example of how results might be expressed
And I guess the other thing to consider is the difference between statistically significant difference and whether the difference is clinically important or not.
How important to you is your life ? Don't gamble. I did 30 months of ADT after radiotherapy and it was no problem at all. Sadly, after 4 years the cancer returned, I had Docetaxel and ADT for life. After several years of ADT the muscle loss is evident and it takes a definite toll on your body and your QoL. This is the time you should ask your question. You are still in the early stage of treatment so be prudent and do what your Dr advises. You may regret it deeply if you make the wrong choice.
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