I’ve been researching the implications of testosterone replacement therapy (TRT) as it relates to the odds of biochemical recurrence with prostate cancer. I went down this path because my prostatectomy surgeon, who is very well respected in the field (200+ papers) and has performed over 5000 surgeries, is recommending I consider going on TRT with my testosterone levels in the mid 200s. (My surgery was in Nov 2023. 4+3. Two undetectable PSAs (<0.006) since then. Like most people when they hear this, I thought this was crazy. I was first led to Morgentaler’s research on androgen saturation, which, in a nutshell, from my IANAD approach, can be summarized as “once you reach a T level of 250, prostate cells can’t take up anymore testosterone, therefore you aren’t at increased risk of BCR if your level is above 250.”
This has led me down a some other paths as I’ve continued to research more and have come across a couple of papers shown below. The summaries of these are basically that doing TRT can actually lower the odds of recurrence in many patients.
Now, I don’t think either of these rises to a level of the research being a slam-dunk because they aren’t robust enough statistically and need multi-center trials etc. However, there may be something here. In my case, it at least makes me want to consider TRT more strongly. Has anyone seen any additional papers on this or have any other comments?
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ManuteBol1
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It’s a risk. Morgantaler is usually cited as a source to support doing it, and there are others of course . However it’s still controversial at best among experts. Since you evidently want to try it, confirmation bias is easy to come by on this, as with anything else.
Certainly I would not be taking advice from a urologic surgeon on the subject, regardless of how many RP’s he’s done. A respected oncologist who specializes in this disease at the best center of excellence you can find is a far better choice.
You said: "A respected oncologist who specializes in this disease at the best center of excellence you can find is a far better choice." - OK - that's mine, and he's OK with it as long as its done by a respected endocrinologist at the same center of excellence. He's calling for initial intense monitoring of PSA (which has been steady and very low for 3 years now) and T level (which started out good after ADT, then started cratering.. now about 180..)
Quality of life vs risk of quantity of life being reduced - so far I think I want to take that bet.
I'm 78 as of today - how much longer do I really have, especially since low T causes a myriad of other issues including bones, blood, arthritis, nerve damage, lethargy, muscle loss, possible link to dementia, etc. Right now - I can barely walk. Pain is constant and goes to 10 at times. Pregabalin provides a bit of relief, but not enough, and the side effects of that crap are worrisome.
I think to make this decision requires looking from afar at what you hope to have happen and then deciding the best path to get there. I was at a T level that was fairly healthy for an old guy - around 320 4-5 months after ADT. Unfortunately - it didn't stay there. I'd love to get it back in that range.
Your supposition is wrong. Walking isn't the only exercise. I used to be at the gym 7 days a week, Covid cut that back to 0 days. That had a big effect. I then came back to the gym 5 days a week - now it's a chore to go 3 days a week, the pain is simply becoming unbearable. Perhaps you'll be lucky or clever and this won't happen to you, but low T is pretty much a promise of some extra health issues - some that exercise isn't the cure for.
Exercise is always the cure, unless your health doesn't allow for it. Yours apparently doesn't. The supposition was a question. I am neither lucky nor clever, whatever that means. Sorry for your troubles.
"Exercise is always the cure" - then qualified by "unless your health doesn't allow for it."
It's the "always" that bothers me. It's sometimes helpful, sometimes very helpful.
If you read back in my posts from pre-covid times I was quite certain that exercise was important (but never that it was the only factor) - now I have to assume - that even as your bio states - covid did a number on more of us then we'd care to admit, and coming back from that when T is dropping like a rock isn't going to happen. You're 10 years younger than I am - and those 10 years make a difference, especially when 18 months of them were spent with ADT. IMHO - ADT ages you 10 years per year you're taking it. I don't think you'll find many medical oncologists who will disagree with that.
TRT was the topic of this discussion - TRT for men who have been treated for PCa. Can we stick to that topic and not drag it off into exercise is the cure? It's not the cure for many of us - and many of us are just trying to survive as best we can. Perhaps TRT might help with the other issues allowing us to exercise more.
If you keep retorting I'm going to keep 'dragging it off' into exercise for sure. That's because exercise is by far the most important metric within your control to fight the disease, the ADT symptoms, aging. all of it.
Yes I'm 10 years younger chronologically than you, but it doesn't have nearly the significance you assign to it. The problem is aging starts to greatly accelerate after 65-75 for everyone, and intervention with exercise is literally the only thing that can effectively slow it. And slow it it does.
ADT does not arbitrarily age every man 10 years for every year you take it. I guarantee it didn't do that to me. It depends on one's ability and( for most) his commitment to intervene.
I spent 18 months on ADT too, plus abiraterone, chemo and radiation. However there's no doubt who had it roughest. It's you. I told you I was sorry for your troubles and I meant it.
What I did NOT mean was that exercise is literally a 'cure' for the disease. However, it is the most effective coping tool in the bag without a doubt.
For you, I can't say. However, for any man that is able to exercise, taking TRT in order to enable exercise is backwards. If the exercise is in place, the T is optimized far beyond what T can do alone. The time to exercise is always.
I agree with your points and position on T recovery and the massive morbidity of ADT - 53 at diagnosis and 56 now. I struggled with most of the side effects you share to varying degrees.
The massive impact of ADT on my QOL has been the worst part of this journey. I had a strong yoga practice and was a strong cyclist before and ADT brought me back to beginner levels.
While I have some recovery of strength and speed on the bike since stopping leuprolide (24 months) & abiraterone (18 months) back in June 2024 my strength is still way off. But my T just hit 22 a few days ago after a low of 3 back in June 2024.
To your point, the ache and pain in joints and muscle still plagues me with the biggest impact on my hips. My right hip pain has been immobilizing a few times and has a constant nagging ache that's painful at times. This was not on the radar before the leuprolide.
A the best for you as you navigate your best course!
I can't comment on TRT, though I've seen discussions on this form and others about it with no definitive conclusions from a medical research point, may personal histories...
Attached is my clinical history. When I did triplet therapy starting in Jan 17, the last Lupron shot was early May 18, a 90 day one, so it would have started clearing my system sometime in August-September 2018.
In October 2018, my T was already at 135 and by February 2019 it was 481. Final T was 608 in April 2023 before starting 12 months of Orgovyx in April 2023 when we reached our decision criteria - three consecutive increases, PSA between .5-1.0 and results from imaging.
That increase began in March 2022...So, questions is, with my clinical history, GS 8, GG 4, 18 months to BCR, PSADT and PSAV, why for three years (February 2019-February 2022) with T between 480-600, did my PCa not start rearing it's ugly head for those three years...
I don't know, neither does my medical team. As a study of one, seems counter to T feeds the fire...but, that's the art and science - we know what my PSA and T were, the science, we don't know why my PCa did not become active during those three years, the art of medicine.
I came off treatment in April this year, having reached our decision criteria for doing so. We are actively monitoring, labs and consults every three months, same decision criteria for starting treatment back up. It will be interesting to see how fast and how much T recovers given I was on Orgovyx and the age difference this time. I can say this though, three weeks after stopping Orgovyx, fatigue and muscle and joint stiffness were gone, perhaps a sign of T recovery. Now, hot flashes, they're like fat cells, they never die...
Thanks for the comments and including your history. On a somewhat unrelated note, were the 0.1s you show on the chart before your BCR actually 0.1s or were they <0.1s? Also, did you ever have an ultra sensitive PSA test (like detection threshold <0.02 or <0.01?
Thanks for that info. One of the things I’m most intrigued with is the frequency of docs that insist on the <0.1 sensitivity test versus the uPSA tests. Even the Mayo Clinic only is interested in <0.1 from what I’ve seen from people’s posts. There is plenty of research to suggest huge value in the more sensitive tests with respect to eventual BCR. While it may come at a cost of anxiety, there is definite stratification in BCR probabilities in various nadir uPSA values. Sub 0.01 within 6 months post surgery greatly changes the recurrence odds and makes it very unlikely (like less than 10% chance) of BCR within 3 years. Looking at your history, I wonder what uPSAs would’ve shown for you instead of those 0.1s.
Your statement, in my observation is exactly that, a clinical marker for docs to consider further disease management and NOT about optimal health for the man.
While I just wrapped up 24 months of leuprolide and 18 months of abiraterone at the end of June 2024 my MO was only concerned that my psa was still < .1.
I feel that uPSA of < .010 should be a standard for RP patients.
I told my MO that I wanted to get my T level of 3 back up to optimal levels and he generically rejected the idea, but would support me no matter my choice.
I have learned so little is offered in optimizing mens health outside of standard treatment. The standard generically used statement - exercise and diet will help. But the rest of it, figure it out on your own!
I've tried TRT twice, once using injected T (T. Cyp) and more recently using a transdermal T hydrogel. See my Bio, details 1 and 3, for more info on this.
Summary of my personal experience:
After 8 months of the injected T Cyp, for TRT (2015-2016) I began to experience very small but increasing rises in my PSA above what was previously < 0.006. So I D/C the TRT and my PSA immediately fell to undetectable.
After 21 months of transdermal TRT (2022-present) my free-T is at a very satisfactory level (avg 10 ng/dL) and my PSA so far has remained < 0.006.
This difference in results might be attributable to what was going on with my PCa activity between 2016 and 2022, rather than the sharp upward spikes in serum T that are an inevitable part of injected T. No way to know for my individual situation.
I did find that maintaining serum total T and free-T within my target range has been easier using transdermal TRT.
The information on transdermal vs injected is quite useful, although I had already decided if I do go on TRT it will be transdermal since it can be stopped almost instantly.
I perhaps happen to be one of the lucky ones. My T has recovered naturally to my pre ADT LEVEL of 700. From experience I could really feel the recovery at around the 233 level. Was that a coincidence or is there something to that 250 level?
After 13 months post radiation to prostrate and pelvic area and off ADT for 9 months my PSA level is still .05 so I am waiting for the other shoe to drop and hoping it does not.
That said and in answer to your discussion I am having a difficult time understanding what is the difference if you take hormone replacement or live with natural T recovery as in my case.
I guess in my mind T whether natural or artificial is the same. So what is the big deal to taking hormone replacement?
Pretty much my thinking too.. After I came off ADT I had been at 330-350, horny and ready to play.. no change in my PSA reads. Then it started dropping. Why? Dunno. Lets bring it back to "normal for a 78-year-old" (@Mgtd I'm envious of your 700) which is 300-500. We can see if that helps the circulatory issues or if I'm off for another round of stents so they don't have to do with my feet what they were about to do with my fathers just before he passed (amputation). We can see if it provides the energy to get to the gym and try to work through the pain and perhaps at least slow the conversion of muscle to gut fat.
I'm ready to go - but the earliest appointment the endocrinologist had available when I went to book it back in March was August, so I'm excited it's only a few months away now.
I am thinking that if there are prostate cancer cells still in your body that a testosterone level of 250 is plenty to keep them growing. Doubt the risk increases with more testosterone although I could imagine it showing up earlier. The real issue is how are you going to fell if it comes back. Will you feel guilty. Also not sure it is worth it. Most of the side effect of anti testosterone therapy are gone at 250. I am there right now and feel great. Even had sex with my wife.
I'm intrigued after reading the full version of the pub med study that ManuteBol1 found (available via sci-hub.st/). That study found a substantial reduction in the risk of BCR in the men with PCa who received TRT, and it found evidence that in men who did have a BCR on TRT, their BCR appeared to have been delayed by 1.5 years compared to the cohort who did not receive TRT. So that suggested to the researchers that high-normal testosterone had a protective effect even in men destined to recur.
Rather than this being an outlier study, it appears to be consistent with a fair amount of research done independently by others.
That's the quality vs quantity question. When I brought TRT up with my med-onco, he said "we need to have a long discussion on this.." which we did (we communicate mostly by Zoom or his cell phone). His answer was it was not an unreasonable thing to do at 78 years old.
You're 10 years younger - your "quantity" side of the equation brings in a different factor. I might lose - a year? Maybe? If PCa reoccurred? You might lose a decade. I might find I was wishing I was dead well before that year is up based on the pain levels and restrictions on movement I have getting more severe - and happily trade that year for a less troubled and restrictive end of life.
FWIW - my father passed at 87 after about 15 years of PCa. He was on ADT that entire time, and suffered greatly from it. That was torture pure and simple. One brother-in-law is now around 86, wheelchair bound, diapered and really a burden to his long suffering wife (she also cared for his mother for 15 years before she passed.) What's he have to look forward to tomorrow if he makes it to tomorrow?
A long-time friend sent me an email - it arrived the day after he'd passed away, given a shot in Sweden where dying with dignity is actually practiced. He had ALS, he had no family, one person he really cared for passed much too young. He was immobile due to the ALS. I don't question his decision. I don't celebrate it either, but I do understand it.
A 2019 paper showed that TRT for men with low-risk PCa who underwent radical prostatectomy had a three fold reduction in biochemical recurrence vs. the untreated men. See: medicalxpress.com/news/2019...
Since this is a forum for high risk men, I can't see the relevance. Low risk men have many advantages, like less risk taking TRT. Metastatic men are in a different world.
I have some information I can provide you on my own experiences if you want. But it's a controversial subject in here so I would just provide it in chat if you want.
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