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testosterone and relapse?

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carpe
Regular Member
Joined : Feb 2013
Posts : 25
Posted 2/25/2013 3:01 PM (GMT -8)
Hello all,

  I am new to the forum and would like to know if anyone has relapsed after

receiving testosteone for low t. I am almost 2 years out with a gleason score of 6 before and after rpt.

0.1 on all psa tests but t is only 189. Would like to start t but am terrified it will trigger

a relapse. onc. says min of three years of 0.1 then we can talk about it.

I'm only 47 but feel wiped out by 10 in the morn. severe depression and almost no libido.

No incontinence and no problems with ed.

Thanks in advance for any feedback

carp

rp

r-4-27-11 

hahnemann hosp in philly

gl. 6  before and after surgery

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logoslidat
Veteran Member
Joined : Sep 2009
Posts : 7585
Posted 2/25/2013 3:10 PM (GMT -8)
I wish i could help you on this one. If I had your stats at my age I might go for it and as one gl 9 texan poster said a few years back. I ain't having surgery and losing my erection or words to that effect, I'll let the chips fall where they may. he posted a few weeks after that and have no idea what happened to him, but I have wondered….. PS . listen to your doctor...
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DonaldJ
Regular Member
Joined : Feb 2013
Posts : 452
Posted 2/25/2013 4:26 PM (GMT -8)
WELCOME to the forum carpe ! I dont know but I can tell you about my experience. I went for a physical and had bloodwork drawn. The Dr. told me I had low T and put me on testostrone patches for three months. I was feeling better, but I started urinating more frequently. I went back for a checkup, did a repeat bloodwork testing my PSA for the first time and it was 6.6, he told me to get off the patches immediately and go get an ultrasound to make sure everything was ok. Well, that turned into a biopsy and then my news I had pc. I would have not known about my pc at all and would have not gotton a PSA test probably until years later. Those testostrone patches triggered the pc enough to give me symptoms.
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mspt98
Regular Member
Joined : Dec 2008
Posts : 458
Posted 2/25/2013 4:28 PM (GMT -8)
Yeah I was in the same boat as you, although a little older. I discovered I had low T 2 years after prostatectomy at 52. I too was scared of recurrence so I waited for another year of 0 psas before asking for T (my number was 176)from my internist. He said no never, not after history of prostate cancer. So I went to operating uro, local uro, and finally local endo for their opinions and they all said ok, in fact endo said it was good idea because I had the beginning of osteoporosis. He told me taking T would not cause the cancer to recurr, but that it would just make it recurr earlier (some consolation!) if it was going to recurr. But I felt so bad I decided to try anyway. 

Since being on T my latest bone scan has gone back to normal, my depression is way less, my brain fog is gone, and my libidio is a little better, not dramatic but better.  My total T is around 300 (210-900 scale) and free t is 60 (25-100). psa is still 0, approaching 5 year mark in September. So I feel better on T and I think i'll keep taking it..........

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diamonds3
Regular Member
Joined : Jan 2011
Posts : 112
Posted 2/25/2013 6:23 PM (GMT -8)
Carpe, give Dr. Bazzan at Jefferson a call.  He can help you out with TRT post surgery.  Start the process now as it takes months to get an initial appointment. 
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Im_Patient
Veteran Member
Joined : Aug 2009
Posts : 713
Posted 2/25/2013 7:15 PM (GMT -8)
Hi, carp
Symptoms that turned out to be low T brought me in to my GP in the first place. He just did a PSA to be thorough, and I had elevated PSA (along with low T). At 18 months after surgery, my uro surgeon allowed me to supplement T to reach normal levels. After about 6 months, I had BCR, treated by SRT. T supplementation probably brought it on sooner, but I expect it would have come on anyway in awhile. At 1 year out from the end of the SRT, I started supplementing again, and have since. To me, it is worth the potential earlier onset of BCR to get rid of my low T symptoms. My understanding is that I am either cured or I am not at this point. The T supplementation will either not make any difference (if I am cured), or it could bring the recurrence back sooner if I am not. My GP says that if it were up to him, I would never get T again. There is quite a difference in doctors' opinions on this subject, and ultimately like anything else, the decision is up to you.
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Swimom
Veteran Member
Joined : Apr 2006
Posts : 1732
Posted 2/25/2013 8:16 PM (GMT -8)
Paul has been on testosterone replacement threapy since shortly before he was diagnosed with a Gleason 6, PCa in 2005 at the age of 48. In fact it was T therapy that surfaced an indolent cancer sooner than he would have otherwise been tested. Less than a year post-op he started back on gels, then shots, and he's been free of lowT symptoms / PCa ever since. Yep, the (almost 8 year mark) latest PSA is another "0".

The whole testosterone thing becomes a quality of life matter for each man to consider for himself . I think of it as either a curse or a blessing. In Paul's case, he'll be dancing at our daughter's wedding in June thanks to early detection and a good care team.

Good Luck and stay well!

Swim

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Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 2/26/2013 12:35 PM (GMT -8)
I've never seen any research that implicated testosterone replacement therapy in PC recurrence after RP. Quite the opposite:
http://www.ncbi.nlm.nih.gov/pubmed/23395803
http://www.aua2012.org/abstracts/printpdf.cfm?id=1487
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rjih
New Member
Joined : Apr 2010
Posts : 10
Posted 2/26/2013 3:44 PM (GMT -8)
I have been on testosterone replacement therapy for approximately 10 years. I had prostate surgery in 2010 and both my surgeon and endocrinologist gave me the green light to continue. So far all of my PSA tests have been undetectable.

I wonder what actions, if any,would your doctor take if your testosterone level was naturally around 500. If testosterone is seen as an issue would some effort be taken to reduce that level?
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diamonds3
Regular Member
Joined : Jan 2011
Posts : 112
Posted 2/28/2013 9:13 AM (GMT -8)

Tall Allen said...
I've never seen any research that implicated testosterone replacement therapy in PC recurrence after RP. Quite the opposite:
http://www.ncbi.nlm.nih.gov/pubmed/23395803
http://www.aua2012.org/abstracts/printpdf.cfm?id=1487

Please explain, as I'm confused by this statement and I have been on TRT for a few months now.
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Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 2/28/2013 10:26 AM (GMT -8)
I'm not sure what was unclear. TRT has never been shown to cause PC to recur after the PC was cured with a prostatectomy, so as far as we know, it's safe. Low testosterone, on the other hand, may be hazardous to one's health and well-being. How's the TRT working for you so far?
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PeterDisAbelard.
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Joined : Jul 2012
Posts : 6408
Posted 2/28/2013 11:23 AM (GMT -8)
To put what Tall Allen said in a bit of context, for over half a century doctors knew -- for clear, simple and obvious reasons -- that testosterone caused cancers to grow and that giving a man more of it after he was treated for prostate cancer would make recurrence more likely, faster and more serious. Nobody doubted it except for a few kooks. After all, if you castrate a man so he has very low testosterone then his cancer won't grow, won't reoccur or progress ... for a while. (It will usually, eventually, start growing again and then there's trouble but at least for a while prostate cancer needs testosterone to grow.) They also knew that some men with normal levels of testosterone, after being treated, did see their cancer return, grow and progress when it wouldn't have if they had castrate levels of testosterone. That gives you two data points. Draw a line through them and you get the picture -- more testosterone is worse (from a prostate cancer point of view).

Then, not that long ago, some researchers (who mostly never doubted any of this) thought: "We know that giving a man who has been treated for prostate cancer extra testosterone is bad. But that's not very sciency sounding with no numbers. Let's look at some men who received testosterone supplementation and put some numbers around the problem." And they did their studies. And the number they kept finding was zero. Some came up with negative numbers. At first a lot of people were sure there was something wrong with the studies. So they did more studies. Still couldn't find it. Now there are still quite a few doctors who still believe that testosterone supplementation is dangerous after prostate treatment, but there are a growing number who doubt it and will say so privately. But in their public statements and in their practices doctors are still very conservative about the subject. Because there are lots of lawyers who still believe it. You'd be hard pressed to find a doctor who would make the statement as baldly as Tall Allen did. But a lot of them believe it.
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Tall Allen
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Joined : Jul 2012
Posts : 10645
Posted 2/28/2013 12:02 PM (GMT -8)
I think they made the erroneous reasoning from symmetry: if taking away all testosterone was good for PC (it slowed it down), then they suspected that adding testosterone must be bad for PC (it ought to speed it up). As it turned out, they were wrong. Dr. Abe Morgentaler and others now espouse "saturation theory." The prostate cancer is like a sponge and testosterone is like water -- once the sponge is completely wet/saturated, adding more water won't make it any wetter. According to saturation theory only two states are important to prostate cancer -- it's either testosterone depleted (as from ADT or castration) or it's not.

In fact, there seems to be a link between naturally low testosterone levels (=hypogonadalism) and higher incidence and more aggressive prostate cancer. It's hard to say whether the low testosterone causes the PC, or whether there is some genetic or environmental co-factor that causes both. There is some evidence that normal testosterone levels may help keep healthy prostate tissue healthy, perhaps by encouraging normal rates of cell differentiation.

My doctors (at UCLA) both agreed to give me TRT after my PSA stabilized. Because I had RT, the question for me wasn't that testosterone might cause a recurrence, but that it might cause my PSA readings to fluctuate in an unpredictable way (perhaps by aggravating BPH), thus interfering with my ability to know if my RT was effective. If I'd had RP and had undetectable levels of PSA for a year, they would have given me TRT immediately. I think many urologists have changed their point of view on this already. Now if only the pharmaceutical companies would take the PC warning out of their advertising, contraindications and package inserts! It's amazing to me that they can say that with absolutely no evidence to back it up.
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logoslidat
Veteran Member
Joined : Sep 2009
Posts : 7585
Posted 2/28/2013 12:53 PM (GMT -8)
Tall Allen, you one smart guy, welcome to you and your knowledge and willingness to share.
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carpe
Regular Member
Joined : Feb 2013
Posts : 25
Posted 2/28/2013 1:28 PM (GMT -8)
Thanks to eveyone for  info on the subject of trt. Im coming up on two years so as long as my next test is 0.1, Im gonna push for trt.  I dont think a reading of under 200 every time I get tested for t is very healthy.

I was gle 6 and a psa of 4.2 at its highest so hopefully Im a good candidate for it.

Thanks again,

Carp  47 y.o from philly

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Postop
Regular Member
Joined : Feb 2010
Posts : 386
Posted 2/28/2013 3:25 PM (GMT -8)
Can anyone provide a link to any randomized trial of testosterone in patients with prostate cancer demonstrating that it does not cause tumor progression? Or any study giving testosterone for a prolonged period of time (years) with an adequate number of subject that shows that it does not lead to an increase in PSA and diagnosis of prostate cancer?

Lack of evidence of risk does not amount to proof of safety.

The reason for concern is that tumors arising from sex hormone sensitive tissues (especially prostate in men, and breast in women) typically shrink when the hormones are removed or blocked, so it is logical to assume the hormones accelerate tumor growth.

The best example of this is estrogen replacement in women. For 40 years, it was assumed that it was safe and beneficial to give estrogen replacement to women after menopause, with decreased osteoporosis and cardiovascular disease. Eventually, there was a large randomized trial which showed that it caused increased cardiovascular disease. Abruptly, millions of women stopped taking it. In the following years there was a dramatic reduction in new cases of breast cancer, nationwide. No question that women feel better on hormone replacement therapy, but few doctors will prescribe it.

It seems that testosterone replacement is analogous to HRT in women. Men go through a state similar to menopause. Testosterone levels go down. We feel a little better on testosterone replacement. The pharmaceutical industry runs advertisements to increase awareness of a "new disease", nicknamed "low T." But is it safe? Who knows? In terms of PCA, perhaps it might be safe if you had a Gleason 6 tumor removed by surgery, and every abnormal cell has been removed from your body, and you have had a PSA of 0 for years. Short of that, it seems dicey.

As for asking the pharmaceutical industry to take out the warning about PCA from their ads--this isn't in the ads because these companies put it in because of concern for potential users of testosterone supplementation, it's in the ads because it is required by the FDA.
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diamonds3
Regular Member
Joined : Jan 2011
Posts : 112
Posted 2/28/2013 4:15 PM (GMT -8)
Tall Allen, thanks for straightening me out. The TRT seems to help me sleep better, which in turn gives me more energy. Also, my joint pain seems to have diminished. When I go back in April I think we will up the replacement.

Carpe, I had the hardest time finding a Doctor in the Delaware Valley who would help me out. A Dr. from HUP never even returned my calls. Please try the Doctor from Jeff I mentioned earlier in this thread. I like him because he emphasizes diet and exercise.
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carpe
Regular Member
Joined : Feb 2013
Posts : 25
Posted 2/28/2013 4:30 PM (GMT -8)
Thanks Diamonds3. I will give Dr. Bazzaan a call. Gonna wait until April 27. 2 yrs post op.
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Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 2/28/2013 4:45 PM (GMT -8)
This subject comes up a lot in my PC Support Group, so I've researched it well.

Postop asked: "Can anyone provide a link to any randomized trial of testosterone in patients with prostate cancer demonstrating that it does not cause tumor progression?"

The research I cited followed men for 3 years after they were treated for RP. Here are a few more that you might want to look at:

10 hypogonadal RP patients were given TRT. After a median of 19 months, none had PSA recurrence.
"TRT after primary treatment for PC"
Agarwal et al, J Urol 2005 Feb; 173(2):533-6

7 men received TRT post-RP with no biochemical recurrence.
"Androgen replacement after curative RP for PC in hypogonadal men"
Kaufman et al J Urol 2004 Sep; 172(3):920-2

31 men received TRT after prostate brachytherapy for a median of 4.5 years, and none experienced a recurrence.
“T replacement for hypogonadism after treatment of early PC with brachytherapy”
Sarosdy, Cancer 2007 Feb 1; 109(3):536-41

13 men received TRT post RT (brachy or XRT) for a median 6 years with no increases in PSA or biochemical recurrence.
“TRT in the setting of PC treated with radiation”
Pastuszak et al (Baylor) Int J Impotence Research 2013; 25,24-28

96 patients from 2000 to 2007 received TRT after initial treatment for PC. While most men in this series had increasing PSA levels during TRT, stopping TRT typically reversed it.
“T replacement in PC survivors with hypogonadal symptoms”
Liebowitz, et al (USC) BJU Int. 2010 May; 105(10):1397-401

They are all small studies. To definitively determine safety of TRT post-treatment would require a controlled study of 6000 men, by one estimation. This is not likely to ever happen.

But your question was about TRT treatment in men "with prostate cancer," rather than those who had been cured. There is one uncontrolled small study that I am aware of, by Morgentaler, in which T was given to men with known untreated PC. In this remarkable study, 13 men with known PC (12 with Gleason 6, 1 Gleason 7) were given T. On the average, there were two follow-up biopsies after a median of 2.5 years. Amazingly, no cancer was found in more than half the f/u biopsies. Two men showed higher grade on initial f/u biopsy, but was not confirmed by a second f/u biopsy in one case or by RP in one case. No PC progression or distant disease was observed:
“T therapy in men with untreated prostate cancer” Morgentaler et al.
J Urol 2011 Apr; 185(4):1256-60

Postop stated: "so it is logical to assume the hormones accelerate tumor growth."

As I said, that's a "fuel to the fire" argument based on symmetry, and it does not necessarily follow logically. The saturation theory has more proof behind it.

Research has consistently failed to find an association between endogenous testosterone (T) levels and risk of PC development, and I think that most authorities would agree that T does not cause PC. This has been substantiated by many prospective controlled research studies. For example:

In a very highly regarded and oft-quoted study, data from 18 worldwide prospective studies were pooled in this analysis of 3886 men with PC and 6438 controls. They found that serum concentrations of sex hormones were not associated with the risk of PC:
"Endogenous sex hormones and prostate cancer: a collaborative analysis of 18 prospective studies"
J Natl Cancer Inst. 2008 Feb 6; 100(3): 170-83

In a recent study of 1,365 men followed for up to 20 years while they were on testosterone replacement therapy (TRT), they found that initiating testosterone treatment had no statistically significant effect on total PSA, free PSA or free/total PSA ratio, and any initial PSA change had no predictive relationship to subsequent diagnosis of cancer.
"Is Testosterone Treatment Good for the Prostate? Study of Safety during Long-Term Treatment." Feneley and Carruthers, J. of Sexual Medicine, June 6, 2012.

In this interesting research, they examined frozen serum samples of 166 men who were originally cancer free but were diagnosed with PC 24 years later and found no association between serum T levels and later PC development.
"Serum T and SHBG concentrations and the risk of PC: a longitudinal study"
Heikkila et al, Cancer 1999 Jul 15; 86(2):312-5

Another tissue study with 727 PC cases and 889 matched controls found PC risk was unrelated to serum T:
"Endogenous sex hormones and the risk of prostate cancer: a prospective study"
Weiss et al. (Natl Cancer Inst, NIH) , Int J Cancer 2008 May 15;122(10):2345-50

In a small randomized double-blind placebo controlled study, researchers at UCLA found that TRT raised T serum levels but had little effect on T prostatic tissue levels. They found no association between T levels and PC incidence. (Researchers at UW-Seattle found this to be true of DHT as well).
"Effect of TRT on prostate tissue in men with late-onset hypogonadism."
Marks et al, JAMA July 6, 2011(306:1)

Postop stated: "it's in the ads because it is required by the FDA."

I agree. The FDA should be basing their requirements on evidence, not conjecture.
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Postop
Regular Member
Joined : Feb 2010
Posts : 386
Posted 2/28/2013 5:57 PM (GMT -8)
So, these aren't randomized controlled trials, they are small observational trials. The recommendation that HRT was beneficial for postmenopausal women was based on hundreds and hundreds of similar small observation studies. It took one of those "impossible" randomized controlled trials with thousands of women to prove that HRT is unsafe for women.

Why, if estrogen is known to promote growth of many types of breast cancer in women, is it not logical to be concerned that testosterone would promote growth of some types of prostate cancer in men?
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Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 2/28/2013 6:18 PM (GMT -8)
The last words have not been spoken on estrogen and breast cancer yet -- most recently, estrogen alone has been shown to decrease the risk of breast cancer, but when combined with progestins, increases the risk. But that is not relevant to this forum. To answer your question, estrogen is not testosterone, and breast cancer is not prostate cancer.

Another very interesting subject to me is the role of estrogen in prostate cancer. The short answer is that it's highly complex- both an agonist and an antagonist. But I'll leave that for another thread.
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Postop
Regular Member
Joined : Feb 2010
Posts : 386
Posted 2/28/2013 6:36 PM (GMT -8)
I was curious enough to look through the medical literature. There have been controlled studies in older men; these studies were pooled and looked at in the following article:

J Gerontol A Biol Sci Med Sci. 2005 Nov;60(11):1451-7.
Adverse events associated with testosterone replacement in middle-aged and older men: a meta-analysis of randomized, placebo-controlled trials.
Calof OM, Singh AB, Lee ML, Kenny AM, Urban RJ, Tenover JL, Bhasin S.
Source

Boston University, School of Medicine, E201, 88 E. Newton Street, Boston, MA 02118, USA. bhasin@bu.edu


They identified 19 studies that met these inclusion criteria: testosterone replacement for at least 90 days, men > or =45 years old with low or low-normal testosterone level, randomized controlled trial, and medically stable men. These studies contained 651 men treated with testosterone and 433 with placebo. Prostate events was significantly greater in testosterone-treated men than in placebo-treated men, including rates of prostate cancer, prostate-specific antigen (PSA) >4 ng/ml, and prostate biopsies. Testosterone-treated men were also four times as likely to have hematocrit >50% as placebo-treated men.

The link is www.ncbi.nlm.nih.gov/pubmed/?term=J+Gerontol.+2005%3B60%2811%29%3A1451%E2%80%937
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Postop
Regular Member
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Posts : 386
Posted 2/28/2013 6:49 PM (GMT -8)
Here is a link on estrogens and breast cancer:

www.sciencedaily.com/releases/2007/04/070418182417.htm
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Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 2/28/2013 7:38 PM (GMT -8)
You seemed to have failed to notice in the study you cited:
"differences between the groups were not individually statistically significant."
Statistical significance is the minimum standard for positing any effect.

On estrogen and breast cancer, the study you cited was from 2007. More recent data shows something different - estrogen alone decreases the risk of breast cancer:
http://www.ncbi.nlm.nih.gov/pubmed/22427684
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Postop
Regular Member
Joined : Feb 2010
Posts : 386
Posted 3/1/2013 12:55 AM (GMT -8)
I'm not sure of your points. The point of posting the meta-analysis on randomized control trials of testosterone supplementation is that there is a reasonable concern that testosterone might have adverse effects on prostate health. Grouped measures of prostate health were increased in the patients receiving testosterone compared to placebo; this was statistically significant. This isn't the same as a single well designed trial that measures effects of a standard testosterone dose on PSA and prostate cancer over several years of observation. Until such a definitive randomized control study is done, it is wrong to say that it is proven to be safe. Its safety, or danger remains unknown.

The article on estrogen isn't a trial, it's just an article reporting the observation that breast cancer rates in the general population of post-menopausal women dropped dramatically after doctors stopped prescribing hormone replacement therapy in 2002. It is true that the Woman's Health Initiative trial itself demonstrated increased breast cancer in the estrogen + progesterone arm but not the estrogen arm, but because of other health issues either type of HRT is not recommended.

The story of HRT is that it (estrogen alone or estrogen + progesterone) was heavily promoted as safe and beneficial for decades and decades based on many, many more studies than exist for testosterone supplementation in men. Millions and millions of women were given it, including my mother, and wife and probably yours, too. The majority of the postmetopausal women in the US and many other countries got HRT for many decades, based on inadequate science. Only when the effort was made to perform a definitive trial was it proven that it was bad for them. Should we repeat this experiment in men?
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