Just wondering if anyone has had similar experience. I had radiation for prostate cancer in December/January (getting out to about six months post treatment). My testosterone is sitting in the low 300's so on the low end of the reference range but still within it. I had been on testosterone replacement prior to the prostate cancer diagnosis for the better part of 10 years but had tapered that off after the diagnosis.
I know that that testosterone replacement after prostate cancer treatment is controversial and evidence seems to be leaning toward it being harmless at physiologic values as long as no prostate cancer is present. The problem of course is not knowing that for sure, so my urologist recommends waiting at least 2 years before considering TRT. However, he is willing to Rx Clomid to help boost levels for now but still admitting there is some risk in raising testosterone levels at all. The idea is that with Clomid, the increase is less substantial and more likely to stay within physiologic range of normal levels.
The only reason I'm really considering it is I seem to have zero libido. I've lost strength in the gym despite doing the same workouts, but I don't think I've had any other major symptoms of low T. The low libido is not such a big deal for me but not great for my relationship/partner, who is understanding but at 54, I feel like I'm a bit young to lose my sex drive completely.
Just wondering if anyone else has had this experience or tried Clomid or has any other relevant experience.
Thanks!
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TonyTx
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Clomid and human chorionic gonadotrophin may stimulate the testes to produce testosterone. TRT will prevent the testes from producing T, so once you start it, it will be forever.
Yes, exogenous testosterone will cause negative feedback to the pituitary and suppress its production while being administered, but once off the medication, the ability of the testes to produce it should recoup somewhat over time. I have regained at least some ability to produce it since my level is low normal. Clomid may help boost it further but not sure whether the benefit is worth the risk. Probably will not be certain but wondered about other's experience for the better or worse. Thanks.
I am in a similar situation. Was on TRT before PC 5 years ago. T now in range but low end. Has the saturation theory been accepted in general so risk is low?
Abe Morgentaler's Saturation Model is well respected and supported by many different data sources.
The model says the prostate cancer growth rate is linear with testosterone level below 250 ng/dl (which is the basis for doing ADT), but for T-levels greater than 250 ng/dl the cancer growth rate saturates and doesn't increase any further. The simple explanation for the saturation effect is that the androgen receptors (ARs) are completely filled up for T > 250 ng/dl (i.e., saturated).
Thanks for posting this! I had read about this too. I hope it's true. If so, then boosting levels wouldn't likely increase our risk but I guess it's not widely accepted enough for all urologists or oncologists to accept it. Also seems like medical practice doesn't change quickly, as it takes years for research findings to be reproduced enough times to change established protocols.
I agree. The game changer will be when the 10-yr survival data is published this Fall by the UK PATCH phase-III study. That will be exciting!
Regarding the Morgentaler saturation model, I've collected PSA vs testosterone data from 8 different sources, normalized the data to the maximum PSA value, and plotted the normalized values on a single graph. While there's significant scatter, overall it reinforces the original saturation model, with a rollover point of about T = 250 ng/dl.
Did you have your testosterone level measured before starting ADT? Perhaps raising your T level back to that point artificially will restore your libido and sexual activity.
I didn't have to do ADT fortunately at my 3+4 Gleason stage. Just the 28 doses of radiation. But yeah, my testosterone was much higher when I was doing the replacement. Thanks for your post.
I'll justs comment I had a longish discussion with my medical oncologist about T supplementation a few weeks ago.
I'm a G10 (or 9, depends on who you believe) with low tumor burden when discovered via digital exam. Had 18 months of ADT (Lupron) and 45 radiation zaps - for a total of 83 Gy - prostate bed and boost to the prostate.
After coming off the Lupron, my PSA started out about >0.1 - but that was with finasteride (for pee problems), once I came off the finasteride, my PSA doubled - which was expected (finasteride side effect is lowering PSA) , and has been circling around 0.18 +/- 0.4 for the past 24+ months. It's actually been on a downward trend the last 3 reads.
My T level was close to 0 on the ADT, it took about 4 months to recover to a bit over 300 after finishing ADT. It stayed at that level for about 4 months, then started dropping - currently it's ~180. Probably about where you are - and I'm having identical issues to yours + some.
My GP on seeing this - and my having issues that can be caused by low T suggested talking to my oncologist about supplimentation.
SO - I did.
His feeling was (and he's a fairly competent MD) was that it was worth trying if we stepped up PSA monitoring. Initially 2 week test, then 1 month, then back to 2 month and finally if everything is OK - back to 3 month testing. He also felt this was perhaps more reasonable since I'm 78 (about 3 weeks) so quality vs quantity has a different balance than someone younger.
What he did very strongly suggest is seeing an MD he knows who is a specialist in endocrine supplementation and reproductive health. He did not want me just getting a patch and wearing it. As he said about the MD who he suggested (at Columbia/Presbyterian in NYC) was "he does this all day long for a living.." Meaning - be treated by an expert.
SO - that's where I'm headed in August (the earliest appointment I could get) to talk to this chap. I don't know where you're located, but it might be worth talking to your oncologist and seeing who he might recommend. Or if you're near NYC - PM me and I'll pass the MD's name along.
Thank you for taking the time to respond and sharing your experience. It sounds like we're in the same boat. Assuming raising testosterone either through testosterone, or through Clomid, is going to improve quality of life (or likely it isn't worth doing?), it does impose some amount of unknown risk. But it does appear low risk, and maybe can be mitigated somewhat by monitoring PSA more often? Thinking back on my prostate cancer diagnosis, I probably wouldn't have know as soon had I not been on testosterone supplementation and monitoring PSA quarterly. Sounds like an excellent idea to look for a medical endocrinologist as well who could probably provide some additional expert advice. Please let me know how that goes for you if you can. I'm glad to know your oncologist wasn't totally opposed to the idea. Thanks again!
I did not know my T level before the RP, but just felt hugely different after it. Tired easily. Couldn't keep muscle mass. Tugs of depression. Weight gain. More easily injured. I was easily climbing 14'ers in CO before the surgery. And had nearly same endurance for a while after surgery. No way now. It seemed like the residual T I had slowly bled off. Had T tested. 330, which as you say, is "within range", but the "range" is a ridiculous 300-1200 so 330 is essentially low in my book. Also, I was 63. My GP absolutely will not help in raising my T. And claims RP has no effect on T. I just had my third annual blood draw for PSA on Monday. If still "zero" I may look elsewhere for T enhancement. Thanks for bringing this up. A sharp friend (DDS, PhDs in math and physics) had RT and told me loss of prostate causes T to drop, so I believe it. But glad to hear confirmation.
Sure sounds similar to me. I don't think I'm having quite so much fatigue. I'm still hitting the gym 3x weekly but I am more tired evenings than I used to be. The libido is the biggest change for me. You might want to consider or inquire about Clomid as well. I'm not sure it's "safer" but my urologist feels more comfortable with prescribing it vs. testosterone, the idea being that you'r more likely to keep the overall levels within the physiologic normal range. My radiation oncologist also told me that radiation wouldn't affect my libido or testosterone although there are some studies that showed that it may lower it, at least for awhile. Maybe it's just getting older and the natural decline with aging as well. But as I mentioned, I'm 54 and don't expect to have zero sex drive!
Yes, my testosterone was at 618 just before radiation (about 28 months ago). Unlike you, I hadn't ever had TRT, never had an issue with low T. I didn't do ADT as part of my treatment.
It dropped to 355 at 3 months after LDR brachytherapy. This happens often, I was told, and also told it should bounce back. And with LDR brachy, it takes longer, as the radiation--seed implants--takes months to decay. Six months later it bounced up to 457, then six months after that to 481.
But now it's going down -- 428 six months later, and 412 six months after that. Two weeks after that last reading (very recently), my urologist, investigating the drop, had me tested again, as he wanted to get the free testosterone numbers as well. The total dropped further to 364, and he said the free number was below the acceptable range. He diagnosed me hypogonadism.
However, he and my oncologist wouldn't think of putting me on TRT until my PSA is below .50 for a while. (Last PSA was .67). And the thing is, I have no symptoms. I have no issues with low libido. Sex drive is as strong as it was before. I am working out at the gym, building/maintaining muscle mass. No fatigue. So I'm not sure I'd go on it even if I could. We'll continue to monitor it and perhaps I will have symptoms at some point.
Remember there are normal seasonal flows to T and also time of day effects T. I have tried to be consistent with the time of day I get blood drawn and use the same testing facility.
Prior to 6 months of ADT I was at 700 T. Upon stopping ADT I could actually feel the T rising. The rebound of T was that dramatic. It took 2 months to hit the magic 250 range. I will get T reading latter this week. I expect it to be higher since I have no fatigue or other SE and my resistance training is back to producing muscle and strength.
I guess every urologist and oncologist may be a little different in their practice. It sounds like you're doing great without low T symptoms then I sure wouldn't be worried about the lower level. I would say no way worth any risk of taking replacement or Clomid if you don't have any symptoms.
This has been an interesting discussion. I think we might try listing the effects that low (and we need to define that number) T can cause.
For me - at less than 300T (I'm now 180 or lower)
- Loss of sex drive and any interest in having an erection
- Muscle loss and pain
- Circulatory/cardio issues became worse
- Weight gain and difficulty reversing that
- Somnambulance - drifting off during the day
- Memory issues - periodically. I'm the guy most of my friends (70's-80's) ask "who was that guy.." and I can usually call up a name. Except sometimes now I can't.
That's what I've experienced (and likely a few I've forgotten due to low-T).. anyone else?
Since mine is in the low 300s it's hard to know if that's really "low". However, since I was on TRT before, it was up around 1000 at that time. I think your body may acclimate to a level so the effects aren't as strong either way but it probably makes more of a difference to drop that quickly vs over decades.
The only symptoms I've noticed are losing some strength in the gym (and muscle mass). I've gained a little fat.. And the lowered libido. I can't say I've noticed anything else that stands out for me at all.
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