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Posted 6/8/2017 1:37 AM (GMT 0)
Well I took the leap and tried it. After feeling crappy for a few years I've now been using Androgel for almost two weeks. Preliminary tests showed a testosterone level at 164. My PSA has been undetectable for several years now, so I guess I'm feeling a little bold about this.

When I went to the urologist to inquire about this he was pretty emphatic in saying that this wasn't going to pose an increased risk of PCa recurrence. I don't think there have been any big definitive studies on this, but a few small studies and a lot of anecdotal evidence seem to indicate that this is a relatively safe bet. My urologist is saying they haven't seen any recurrences at Cleveland Clinic after testosterone replacement, and I know they see a lot of PCa patients.

I haven't read anything here about testosterone replacement lately, but has anyone had any experience with this?
Posted 6/8/2017 1:46 AM (GMT 0)
I have. My urologist wanted me to get to two years and a stable PSA first though. I take an injection every two weeks but my PCP said "that's too low of a dose", so apparently they're still taking it slow. My T was about 240 and this has btought it to 400.

My urologist at Emory claims to be an expert on hormone therapy and such. She believes in being very careful, in that if I still have some cancer, it could speed it up.

I will say this: In late 2013 I started a T supplement and my PSA doubled in 9 months and I was diagnosed. I think it sped it up. No doubt in my mind.
Posted 6/8/2017 1:56 AM (GMT 0)
Interesting. Thanks for replying, Dewayne. So you started hormone replacement therapy before being diagnosed with PCA? I assume you stopped that when you were diagnosed. I've read that it tends to increase PSA, but that it doesn't affect cancer recurrence. But who knows?

Based on your experience I guess the key question is whether I have any cancer to speed up. Wish I knew for sure, but my PSA's been undetectable for quite a while now. It looks like your PSA has been good since brachy. Glad to hear it.
Posted 6/8/2017 2:23 AM (GMT 0)
This is a pretty complicated area with som preconceived ideas changing.

http://urologytimes.modernmedicine.com/urology-times/content/tags/john-p-mulhall/testosterone-replacement-therapy-displays-long-term-safety?page=full

I discussed it briefly with my surgeon but didn't push it. He was not I favor of it. As my T levels are not that low (around 400) it's not presently something I am thinking about.
Posted 6/8/2017 2:28 AM (GMT 0)
Yeah, 400 really isn't that low. I wouldn't be thinking about it either if I were you. But you're right; the consensus on this does seem to be changing.
Posted 6/8/2017 12:05 PM (GMT 0)
Jazzman1,

Yeah, I'm working through this now, too. I had five years undetectable uPSA post prostatectomy (2012), started Androgel after the first two of those years, then switched to test cyp injections at the four year point both for cost and 'cause the Androgel wasn't absorbing well (that happens sometimes w. the gels). My uPSA became minimally detectable in Feb., I went off the injections in March, and I have been monitoring my uPSAs monthly. It has bounced up/down/up a little, but recently was exactly where it started in Feb. Go figure.

Still trying to puzzle through this myself. Doing what I can to keep my T up naturally (weight lifting, aerobics, minimal alcohol) but am convinced could really benefit from the extra 250 or 300 testosterone points if I could go back on the shots. Next yearly uro appt is Dec.

Another poster linked to the ASCO publications for this year's conference:

/am.asco.org/sites/am.asco.org/files/AM17-Proceedings-GENITOURINARY-PROSTATE-CANCER.pdf

Inside it, if you will scroll (or "find") down to session 5085, there is a very interesting study about just this topic. The only thing I would note is it studied relationship of TRT to *first time* PCa incidence and severity thereof. Whereas in our cases, we already had the RALPs, *then* started the TRT, and we are concerned with a recurrence of cancer. I don't know why the study would not apply to us, too, but who knows with this strange disease? Is it possible TRT is helpful while a man has his prostate, but acts differently on residual prostate cells, benign or cancerous, after the prostate is gone?

I also note you and I are both T2c+. At our surgical margins, we had/have a patch of tissue that is some combination of benign plus cancerous prostate cells. That is, if the surgery itself did not kill off that patch of cells--remember Dr. Walsh's book's suggestion that RALP is like lightning hitting a tree - a circle of grass beneath the tree also gets fried. Blood vessels/cells get disrupted or go dormant, may reenergize later, and so forth (my take).

I would think your docs would monitor your uPSA rather closely, regardless of how confident they are that TRT will not harm guys in our boat. Please keep us posted of your experience(s) in the future. I will be very interested.

Robert
Posted 6/8/2017 12:16 PM (GMT 0)
I may be the outlier here, but I have been using TRT for about 5 or 6 years now -- before diagnosis, through SBRT radiation treatment and after. My uro and my RO weren't sure how to proceed, but we reached out to Dr. Abraham Morgentaler in Boston for a consult. His work of the last 20 years on the impact of T and TRT on PCa is published in many peer-reviewed journals, and is highly regarded.

To try to summarize the results of a day-long trip to Boston and many emails and phone calls, Dr. Morgentaler's opinion (backed by his research), is that as long as the patient would not otherwise need ADT as standard of care for his pathology, there is no reason to withhold T treatment. The body cannot tell whether its T is made internally or purchased at the pharmacy. T is T, and your T level will not appreciably impact PSA or cancer progression unless it is brought below castrate levels, and this is only standard of care for higher-risk cases, so T replacement/supplementation is safe for low and some intermediate-risk cases.

The only place where I think there is any room for uncertainty is the question of how the external T may or may not impact ongoing PSA measurement as an indicator of disease control. Dr. Morgentaler and I feel that this effect is minimal, if any, as long as we keep my T levels at a relatively consistent level (mine is currently in the 500-600 range).

I am in no way affiliated with Dr. Morgentaler. I'm just a patient who sought his consultation. I suggest you read some of his papers and articles, maybe send them to your docs, and make your own judgment.
Posted 6/8/2017 1:22 PM (GMT 0)
Unless your Urologist is also an Oncologist, I think I would seek out the advise of a Medical Oncologist before I started TRT.....
Posted 6/8/2017 1:52 PM (GMT 0)
Paxton,

I've read some of Dr. Morgantaler's pubs online and have his book "Testosterone for Life". Very encouraging info. I don't remember him specifically discussing or recommending TRT after prostatectomy, though. Nor have I read much else online about that.

But he did discuss it with you after your SBRT. On your comment:

"The only place where I think there is any room for uncertainty is the question of how the external T may or may not impact ongoing PSA measurement as an indicator of disease control. Dr. Morgentaler and I feel that this effect is minimal, if any, as long as we keep my T levels at a relatively consistent level (mine is currently in the 500-600 range)."

My uro said he like to keep his guys in the 700 range. He asks them to test their T exactly 7 days into their 14 day T cyp injection cycle, I guess because that's a good "average". The typical blood test range for American men, which varies between Quest and LabCorp, seems to be in the 250 - 1200 range, give or take.

When I look at web studies about the actual blood levels on test cyp injections on a 14 day cycle, as I am on, the T really spikes in the 1-3 days after injecting, then due to the 8-10 day test cyp half life, by the 12-13 day of cycle (just before next injection) the T level is really tanking. That's what i experience on my T cycles. My butt is really dragging at end of cycle. Could be part psychological, but I think it is really physiological, too. My uro says some of his guys ask to inject half-dose every 7 days, and he is ok with that. I may ask to do that, too. Maybe my very high T level just after injection is supercharging some benign prostate or other cells (other organs produce small amts of PSA too). Injecting every 7 days would mean 52 sticks per year but might even out the up/down T blood levels for me. We will see.

Paxton, in discussing impact on ongoing PSA measurement with Dr. M., did he mention this supranatural effect on blood levels of T if a guy is doing injections rather than daily gels? Just curious...

Jazzman1, guess a takeaway for you would be that tracking uPSA while you are doing TRT may require some close attention, but is probably a very good idea despite the hassle. Am sure your docs will guide you appropriately.

Robert
Posted 6/8/2017 2:26 PM (GMT 0)
Bobbie - the doc and I did not get into any detail as to delivery method for T replacement. I have been using Testim daily for the entire time I've been on TRT, with pretty good results. I did try Androgel for one monthly cycle, but for some reason I did not absorb it well and my levels dropped precipitously. I seem to do fine on Testim, but we do have to accept its "aroma" (sort of a chemical odor). After 5-6 years, my wife still complains, but it works well and is easily transported when traveling and is easily applied.

I do believe that Dr. M and a group of docs have published a study on use of T replacement after treatment for PCa where said treatment included surgery patients, but I am "link-challenged" at the moment.

Our basic operating assumption is that the external T may induce some noise into PSA tracking, but that unless something really extreme presents itself, we are looking at trends rather than individual measurements, and the noise can be excluded from our interpretation.
Posted 6/8/2017 2:44 PM (GMT 0)
I've been using Androgel for five + years.

I've also stopped it for a couple months at a time like I am now... Can't say that I can tell a difference either way.

I've heard wonderful stories about how going from 150 T Level to 700+ was life changing for many guys. I just don't see it.

I'll probably start using again if Blue Cross will quit jacking me around. And the new $100 a month price isn't fun either.
Posted 6/8/2017 5:28 PM (GMT 0)
I am coming up on 6 years since surgery and have been on T replacement for several years now with no problems. My urologist (who is also an oncologist) and I became comfortable with the idea after discussing the saturation model theory. We agreed to close tracking of PSA and blood counts and started with injections. Levels swung too much between injections and I also tended to run bit to high on hematocrit while on injections. Androgel plus a return to being a blood donor fixed these two issues. Now have an endocrinologist as primary doc for Androgel. Uro is ok with this and still checks PSA, along with the endocrinologist.
Posted 6/8/2017 5:51 PM (GMT 0)
It seems as if some of us have doctors who are willing to discuss and potentially apply saturation theory in their ongoing treatment of PCa patients. I applaud each and every one of them. T replacement may not be appropriate for every patient, but to simply be told that previous replacement must be stopped because "That's what we do" should no longer be accepted.

It is often (for many of us) well worth the discussion to decide between you and your doctors whether this therapy is appropriate and whether it will likely make a difference for you. It does for me.
Posted 6/9/2017 12:07 AM (GMT 0)
There's still some lingering skepticism about this stuff, but the consensus appears to be drifting toward thinking there's no real risk for PCa patients who were treated for low grade cancers and have undetectable PSA scores. I wouldn't even consider this if I was a Gleason 8 or if my PSA was in the detectable range.

Interesting group of responses here. Everything from "I'd check with an oncologist" to "I did it and didn't notice a difference" to "it's been terrific." I've seen some of Dr. Morgantaler's material online; he seems to be a big advocate for TRT. I'm pretty optimistic about it not bringing my cancer back, but it's also true that there haven't been any large, long-term studies on TRT for prostate cancer patients. Admittedly it's a bit of a leap of faith.

My doc plans to follow up very closely with PSA tests and such, so we'll see how it affects things. I'm not really worried about it, but I'll probably be more anxious in that time between getting the blood drawn and getting the PSA results. But I mostly just hope it gets me my mojo back.
Posted 6/9/2017 1:21 AM (GMT 0)
Mojo is good.

Hope to get mine back.

Robert
Posted 6/9/2017 1:59 AM (GMT 0)

Jazzman1 said...
Yeah, 400 really isn't that low. I wouldn't be thinking about it either if I were you. But you're right; the consensus on this does seem to be changing.

To be clear, I'm at 400 AFTER T supplement therapy.

I agree with others, get an expert to help you with this since you've had cancer.

As I said, my PCP scoffed at the dosage a specialist from Winship Cancer Institute prescribed me. So I wouldn't trust a non-expert. They just don't have the experience.
Posted 6/9/2017 2:39 AM (GMT 0)
I'm taking a bit of a different approach. I am coming up on five years of undetectables and am two years past the end of my ADT. I've been a bit disappointed at my recovery after the ADT so I have added a small amount of clomiphine to my daily handfull-of-pills. In theory it will increase my "natural" production. I should find out in about two weeks when I have my next blood test.
Posted 6/9/2017 12:14 PM (GMT 0)
Peter - clomiphene citrate (clomid) worked for me, but that was 30+ years ago. These days, my deficiency is more profound (adult onset hypogonadism), so TRT was my best option.
Posted 6/9/2017 11:13 PM (GMT 0)

Dewayne said...

Jazzman1 said...
Yeah, 400 really isn't that low. I wouldn't be thinking about it either if I were you. But you're right; the consensus on this does seem to be changing.

To be clear, I'm at 400 AFTER T supplement therapy.

I agree with others, get an expert to help you with this since you've had cancer.

As I said, my PCP scoffed at the dosage a specialist from Winship Cancer Institute prescribed me. So I wouldn't trust a non-expert. They just don't have the experience.


Got it now. Low T has obviously screwed up my reading comprehension. I'm with you on the "get an expert" recommendation. With all this stuff you want the best doc you can get.
Posted 6/10/2017 12:40 PM (GMT 0)
Jazzman1,

Thanks for posting about your TRT. I have been on TRT for 11 months after 30 months post-SRT and 42 months post-RP. My PSA has crept up from 0.03 to 0.18 after TRT and my next urologist appointment is July 14th. I have read every patient post and research available on the internet. The most interesting article I found this morning is a VA study published by the Journal of the American Heart Association in May indicating that TRT reduces atrial fibrillation (AF). This is big, big news and as clinicians become aware of it no doubt it will have a huge impact.

My PCa history is borderline intermediate risk. I opted for SRT 12 months after RP on a PSA elevation to 0.12. I definitely suffered form low T over the last 3 years but no one every tested my T either before PCa treatment or afterwards. I think a lab technician may have taken it upon themselves to order the test on a regular PSA screening last year which led to my diagnosis of low T. Neither my PCP or Surgeon or Oncologist ever tested for T even though I had signs and symptoms of depression and anemia. I also read a great article this morning published in the Translational Andrology and Urology 2015 by Giovanni L. Gravina of the University of L'Aquila, Italy. The article speaks in depth about the psychological effects of low T and PCa.

There is so much controversy with TRT and PCa patients and in general I think like anything else that is new and untested professionals approach it with caution. My urologist is undecided at this time and I am struggling with whether or not to end TRT this week to see what effect it might have on my next PSA test in 4 weeks. I do get a little depressed though if I miss a dose or two. I am currently only applying half the dosage recommended by my urologist, 1 pump daily of Androgel. Maybe I need to be using the full dose, who knows.

I saw a post on a blog last week that recommended use of bioidenticals instead of synthetic T and that synthetics might cause cancer. A book by Suzanne Somers was recommended called the Sexy Years so I guess I will be looking on Amazon for that.

Fellas - - please keep up the fight and awareness for men's health. Lets get the national sports teams wearing blue in support of prostate cancer awareness.

Rust
Posted 6/11/2017 12:19 AM (GMT 0)
Rust, thanks for responding.

I think I found the paper you mentioned. Pretty interesting stuff:
tau.amegroups.com/article/view/6210/6950

There's nothing definitive here, of course, but it's encouraging. The whole idea of testosterone possibly having a beneficial effect on Pca is particularly intriguing. Thanks for educating me.
Posted 6/11/2017 12:46 AM (GMT 0)
I've posted my story many times before but it relates to your question. I had prostatectomy 9 years ago, found out on routine testing that my total T was very low at 176, free T even lower at 4.1. I had read a lot about bone density loss from low T asked for bone density test from internist and low and behold I had osteopenia. My internist said take more calcium I said what about T (post op psa had been undetectable for 3 years by then), he said , "Oh no a man who has history of prostate cancer can never get T" I knew that was baloney so I went downstairs to his partner the endocrinologist who looked at the same data and said I needed to be on T or my bones would be eggshells. After using the gels I was able to get the T up into the 400-600 range and my bone density tests have shown major improvement in past 3 years. A bigger concern than the recurrence of prostate ca from TRT is some studies show a link between TRT and heart attacks/strokes in men with heart disease. I don't have that so my endocrinologist believes the benefits of the TRT offset a slightly increased risk of heart attacks/strokes. And no my psa has never become detectable all this time
Posted 6/11/2017 11:45 AM (GMT 0)

Bobbiesan said...
Jazzman1,

Yeah, I'm working through this now, too. I had five years undetectable uPSA post prostatectomy (2012), started Androgel after the first two of those years, then switched to test cyp injections at the four year point both for cost and 'cause the Androgel wasn't absorbing well (that happens sometimes w. the gels). My uPSA became minimally detectable in Feb., I went off the injections in March, and I have been monitoring my uPSAs monthly. It has bounced up/down/up a little, but recently was exactly where it started in Feb. Go figure.

Still trying to puzzle through this myself. Doing what I can to keep my T up naturally (weight lifting, aerobics, minimal alcohol) but am convinced could really benefit from the extra 250 or 300 testosterone points if I could go back on the shots. Next yearly uro appt is Dec.

Another poster linked to the ASCO publications for this year's conference:

/am.asco.org/sites/am.asco.org/files/AM17-Proceedings-GENITOURINARY-PROSTATE-CANCER.pdf

Inside it, if you will scroll (or "find") down to session 5085, there is a very interesting study about just this topic. The only thing I would note is it studied relationship of TRT to *first time* PCa incidence and severity thereof. Whereas in our cases, we already had the RALPs, *then* started the TRT, and we are concerned with a recurrence of cancer. I don't know why the study would not apply to us, too, but who knows with this strange disease? Is it possible TRT is helpful while a man has his prostate, but acts differently on residual prostate cells, benign or cancerous, after the prostate is gone?

I also note you and I are both T2c+. At our surgical margins, we had/have a patch of tissue that is some combination of benign plus cancerous prostate cells. That is, if the surgery itself did not kill off that patch of cells--remember Dr. Walsh's book's suggestion that RALP is like lightning hitting a tree - a circle of grass beneath the tree also gets fried. Blood vessels/cells get disrupted or go dormant, may reenergize later, and so forth (my take).

I would think your docs would monitor your uPSA rather closely, regardless of how confident they are that TRT will not harm guys in our boat. Please keep us posted of your experience(s) in the future. I will be very interested.

Robert

Robert,

Are you saying that you went off TRT in March this year because your PSA rose to 0.025 and not 0.25? I mean isn't 0.025 even with the ultra-sensitive test still below the detection limit? Mine went from 0.03 to 0.18 over the last 11 months while on Androgel and I am in a daily state of anxiety about whether or not to continue therapy. I also keep in mind that low T might be a contributor to PCa development and TRT might guard against development of PCa. I read research yesterday that says that if TRT post PCa treatment causes recurrence and in turn cancer growth that it may be a less aggressive phenotype.

Thanks,

Rust
Posted 6/11/2017 5:27 PM (GMT 0)
Rust,

"Are you saying that you went off TRT in March this year because your PSA rose to 0.025 and not 0.25? I mean isn't 0.025 even with the ultra-sensitive test still below the detection limit?"

yes to your first question, no to second.

Since RALP in April 2012, I have been getting self-ordered uPSAs because my doctors only used standard PSAs. My feeling was "trust, but verify".

All tests I ordered were LabCorp Roche ECLIA tests, so "same lab, same methodology" -- I have all copies and just verified that. Until summer 2013, the LabCorp printouts show < .006. After that, they show < .015. So those were the lowest levels their test could detect. So if I wasn't truly 0.000, maybe .003 until July 2013, and maybe .013 thereafter - who knows? You have to realize, these are measurements of thousandths of a billionth of grams/mL. If you trust that level of accuracy!

Until Feb., 2017, of course. On Feb. 4th, I got a reading of .024, and (being stunned, and scared) got a confirmatory test two weeks later -- .025. My latest test was three months after that one, May 24th, and it still showed .025.

I passed my results on to my uro's office, went over them with his nurse, who promised me they would let me know if I needed to change anything before my next routine annual in Dec. Never heard back. So took it on myself to go off the test cyp injections (Mar. 14th). I planned to self monitor uPSA for a while and then decide whether to go back on the TRT. I have the serum, needles and syringes to last until Dec., so can just do my own clinical trials (N = 1)-- ha! Sure would feel better being on the juice, though.

So what do I make of it? Pretty late for benign recurrence. But if it is PCa recurrence, it's sure not going anywhere fast, apparently. And you know what, if it doesn't bother me and I comfortably calculate that it won't bother me until something else likely kills me, well, honestly, don't much care what it is.

Only thing I can guess, as a layman not getting any further from the docs on it, is that the change to TRT injections, with its extreme highs/lows due to the 14 day injection cycle and test cyp half-life, possibly "provoked" some prostate cells, cancerous or benign, to activate. Androgel did not, because it is "steady state", and I wasn't absorbing it well, anyway. I do know my ED has pretty much cleared in the last year--again, pretty late in the game, but also possibly telling of some blood vessel/tissue repair and regeneration. Who knows? Nobody seems too interested, except me (and my wife).

Hope that helps.

Robert
Posted 6/11/2017 5:57 PM (GMT 0)

PeterDisAbelard. said...
I'm taking a bit of a different approach. I am coming up on five years of undetectables and am two years past the end of my ADT. I've been a bit disappointed at my recovery after the ADT so I have added a small amount of clomiphine to my daily handfull-of-pills. In theory it will increase my "natural" production. I should find out in about two weeks when I have my next blood test.

Clomid increases LH and FSH which increase production of testosterone and sperm. In addition, abdominal fat cells have FSH receptors so that FSH increases visceral abdominal fat.

www.ncbi.nlm.nih.gov/pmc/articles/PMC4406670/
www.nature.com/nature/journal/v546/n7656/full/nature22342.html
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