Hi All. It has been awhile since I have posted since I have been lucky to have a PSA <.1 for over 5 years. I was TB3N1M0. GL 9 PSA 14.
It will be 4 years in May since I stopped Lupron and Zytiga. The only negative has been my "T" has not recovered at all. All in all I have been doing fine without T. No brain fog (I think), no weight gain or bone density loss.
I am thinking I might want to try TRT to help my skinny little arms and gain some energy. I work out a lot, just to maintain what little muscle I have. I am still active; pickleball, softball, bowling, golf.
Am I crazy for wanting some Testosterone? My Kaiser PA (who is temporary, waiting for a new oncologist) thinks I am crazy and says no way.
Any opinions or even studies? I cant find any for my position.
Appreciate you all!
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keepinon
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Could your PSA be undetectable as you still have no Testosterone, which was the point of ADT?
It's a risk only you can choose. Will TRT bring back your cancer? Maybe Maybe not?
Kaiser absolutely will not give TRT to a former PCa patient. My Kaiser MO told me I need to stay on ADT forever!!! Refused to discuss TRT, and also Estrogen patch.
Had RALP, and BCR 4 years later, with 1 bad lymph node.
My new UCLA Onco (Dr Matthew Rettig) told me to stop Lupron, already stopped Zytiga due to heart issues. Been on ADT 2 1/2 years Zytiga 2 years with 33 rounds of VMAT EBRT. Says its been enough, and anymore wont help.
Warned me also my T might take a long time to return.
You being similar brings my hopes up (4 years clear) but worries me Ill never get my T back.
Ill give it a year, then thing about TRT like you.
If I choose to do TRT, I'll ask for all or nothing. Max TRT!!!
Youhave had an amazing response. Congratulations! My worry would be that you are considering going “a bridge too far”. If there are cancer cells napping in your body, and there likely are, you’ll be ringing the dinner bell. You’ll have to decide if what you are hoping to achieve is worth the risk.
Just depends on whether you are for sure metastatic or not. If the idea was to cure the oligometastatic cancer, why wouldn't you want to test the cure? Obviously your testicles are not going to respond. You can try clomid first to see if it jolts them. Probably won't. So then your next avenue is to inject testosterone or apply a cream. There is an oral testosterone also. It's not hard to get, but you will have to go to a retail men's place or perhaps your personal physician and just show them your stats that show undetectable PSA for four years and they will probably prescribe it. Feels good. Wake up with boners and such. And then keep an eye on your PSA, which will go over .1 most likely as a result of the benign PSA created by the stimulated prostate. then you just have to do the research to see where you go from there and enjoy the ride. Or if you are enjoying life without it and don't want to risk it, keep doing that.
Have you tried clomid and/or human chorionic gonadotropin for 2 weeks as a way to jump start your sleeping testicles? Your urologist may be more willing to try that than TRT.
my testosterone has never recovered since finishing treatment in 2016 rt/ht t3b no mo, I have asked for some testosterone a few times but no because there is some sleeping cancer cells, and now I have osteoporosis because of no testosterone and I am on zoledronic acid infusions and early symptoms of proteinuria, but what can you do.
Sometimes you have to take matters in your own hands. There are plenty of doctors that will prescribe Testosterone. But if you don't want it, just say so and don't blame it on a doctor.
I'm surprised no one ever mentions DHEA as an alternative to testosterone therapy DHEA improves mood bc low testosterone lowers dopamine DHEA protects nurons in the brain from inflammation it also strengthens bones
But DHEA will also produce dihydrotestosterone - DHT so taking DHT blockers alongside DHEA preferably a natural DHT blocker would be a good idea
I started taking DHEA after my Tulsa Pro procedure and it zoomed my PSA from 2.4 to 6 pretty quick. Probably still had PCa in prostate since Tulsa Pro doesn't really work. I don't recommend DHEA based on my experience. Which experience was a result of reading your same advice on here from somebody else at the time.
I am 71 year old with diagnosis of G9 with RP in 10/21, solitary met in 3/2022 on PSMA PET treated with SBRT, rapid PSA doubling with second PSMA PET revealing new pelvic node in 09/22. Sought treatment at JH with aggressive triple therapy 10/22-12/22 and subsequent pelvic radiation 4/23. Off Daro after the 3 month Taxotere and Lupron after 1 year. PSA went undetectable after second chemo infusion 10/22 and has remained so. My T never recover 18 months post ADT.
My MO referred me to an endocrinologist for TRT. I have been on Androgel for 10 weeks with normal T and PSA remains undetectable. The difference in my mood, cognition and energy level is night and day. Working out and regaining lost muscle mass. No more hot flashes. Libido and erections have returned. Never knew how important T was until I lost it and regained it.
TRT in the setting of prostate cancer, particularly metastatic disease, is highly controversial. But there are a number of very experienced, knowledgeable MOs/urologists who believe TRT is indicated in a certain subset of patients.
Long term testosterone deprivation carries its own risks. Plus QOL issues. It's an individual decision made in conjuction with progressive, knowledgeable professionals. I certainly wouldn't go to some website or random clinic to get TRT. There are side effects to TRT that need to be monitored.
BTW, clomid is only effective to "jump start" your testicles if your FSH/LH ( produced in pituitary) are low. If they are high (by blood test) the clomid will be ineffective because that's what it does-stimulates the hypothalamus/pituitary to produce FSH/LH to tell the testicles to start revving up the T factory. If your testicles don't respond to that stimulus you have primary hypogonadism and they don't work anymore. At that point you need exogenous T by gel or injection.
The "sleeping" prostate cancer cells in your body that may or may not respond to rising T levels don't know the difference between the T produced by your testicles (by stimulation with clomid, if effective) or by exogenous T using Androgel or injections.
As was mentioned above the QOL w/wo T was night and day for me. Having experienced both ends of that spectrum and considering my age, 80, I would seriously consider HRT.
Luckily at my age prior to ADT I had a T level of 700 and it has rebounded. You may want to consider what your baseline T was. I believe that may indicate the value of HRT in your case. For example if you T was low to start with perhaps HRT will not be as noticeable on your QOL as was the case with me. In that case the risk may not be worth it.
Since the studies show that TRT is safe, you could just go out and find a MO who would administer it. That's certainly what I would have done had my T not recovered naturally. Of course, I had a much greater motivation than you, due to the horrific SEs that had rendered me suicidal.
There are very limited studies and most are with older men without prostate cancer with TRT and following PSA and T. A few are with men with limited cancer, some low grade, with no evidence of recurrence over several years.
To the best of my knowledge there is no published study giving TRT to men with history of metastatic disease with a period of undetectable PSA. But there are MOs with personal experience and a data base of such men and I expect in the next few years we will see publication of that data.
For you, I would see TRT to be exactly equivalent to if you had natural testosterone recovery. Except you could simply stop it if your PSA took off. IMO the benefits outweigh the risks.
Exactly. Just stop if the PSMA comes back with uptake. But some PSA increase is natural on TRT. It stimulates what's left of the prostate if you still have one. I personally spoke with Dr. Morgentaler and he said it was not uncommon for TRT to result in slow growth of PSA over years for elderly men, that still had a prostate, that was not a recurrence, even above 2.0. The key is very slow, stable growth as we get older. Obviously the calculus is different if you don't still have a prostate. Also, I have seen many that believe that continuing to deprive cancer of Testosterone may increase the ability of the cancer to do a work around and come back castrate resistant. It's complicated and needs really in depth studies.
I am sorry to tell you that Gern is no longer with us. After three years on the ADT and the Lupron his PSA started to rise. so they tried xtandi which gave him a full body rash, and after that they tried Nubeqa which made his PSA rise. All those drugs gave him terrible heart issues. Then they gave him a half a dose of chemotherapy. It caused his WBC to be 1 which in turn gave him a severe case of diarrhea. They sent him home on hospice where he passed. They couldn’t get his heart and low BP regulated. So I hope you tolerate those drugs better than he did. He did tolerate the Lupron. I hope you have better luck. Last year was hard and I certainly am missing him. Laurie
I finished my last Leupron shot on July 18, 2024. It was a 3 month dose. Just last week I had my first follow up with my urologist. My testosterone did rise ever so slightly to a level of 50, up from 38 six months prior. Of course I asked him what the plan was in the event that it never comes back. He did say that TRT was an option down the road but that it was much too early to consider now. Just a few years ago, he told me that TRT was not an option. Apparently, opinions have changed regarding this.
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