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Medical Forum / Diseases and Disorders / Prostate Cancer / September 2004

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MH - 06 Sep 2004 14:46 GMT
Anyone else here diagnosed with low Testosterone before being diagnosed with
PCa?  I was.  My levels were around 187..... where 500 is normal.  I was
taking TRT for about a year before I was diagnosed.  I felt physically
better that year than I have EVER felt in my life.  I had more energy.  My
depression was much better.  I was exercising and toned and felt *fit*.  The
difference was amazing.

I have had two different urologists tell me that, after 5 years of
undetectable PSAs, they would be okay with me going back on the TRT, as long
as it is monitored closely.  I know some of you will say, "No, No!"  But can
someone explain to me please... if you are a man with normal levels of
Testosterone, let's say 500 to 600... and you have PCa.  The doctor does
RRP... but he does not routinely cut your testicles off to shut off the
testosterone.  So you still have your same level of 500 to 600.  What is the
difference in that... and someone like me who needs a supplement to get me
up to the normal range to feel better?

I know there will be lots of opinions on this question.  I know that if PCa
has metastisized, androgen blocking drugs *are* used.  But, assuming they
*got all my cancer*, that is not something I have been required to do.

Please understand.... the depression is really BAD at times.  It was there
long before PCa..... It is biological in origin and it's tough to deal with.
The fatigue is also *always there*.  I've tried every anti-depressant known
to modern medicine, and they do me very little good.  Prozac seems to be the
best, and I take it now.

I'd appreciate your *thoughtful* comments, please.... Just trying to
understand what the difference is between those of you whose testes produce
enough T to keep you in the normal range... and those like me who seem to
lack that T level and, as a result, suffer from fatigue, depression, etc.

Thanks!
Mike
Leonard Evens - 06 Sep 2004 21:18 GMT
> Anyone else here diagnosed with low Testosterone before being diagnosed with
> PCa?  I was.  My levels were around 187..... where 500 is normal.  I was
[quoted text clipped - 30 lines]
> Thanks!
> Mike

If the entire cancer were definitely removed, then you could take as
much testosterone as you wanted without changing your risk of
recurrence.   But that is a big "if".   I think your doctors are
concerned that some prostate cancer cells are still lurking in your body
and are being kept under control by your immune system.  If so, they
don't want to give those cells a jolt to help them grow.

As to why it wouldn't be fine to raise your testosterone level to say
what mine is,  I think the answer is that doctors try to follow the rule
"first do no harm".   And, they certainly wouldn't agree if I wanted to
increase my testosterone level to what it was when I was 25 for the same
reason.   On the other hand,  I believe there are some doctors who think
your argument makes some sense and would agree with raising your
testosterone level to closer to normal for your age.   So you should
seek other opinions.  But be careful not to shop around just for a
doctor that will provide the treatment you've already decided is right
for you.  That amounts to being your own doctor,  which is always a mistake.

A more important question is determining just why your testosterone
level is low.  Perhaps there is some underlying condition which could be
treated and then the testosterone levels will take care of themselves.

P.S.  I also suffer from moderate depression, and as far as I know I
have normal testosterone levels for someone my age.   My solution is
regular physical exercise.  Without it I would be physically and
mentally depressed all the time.
Larry Preuss - 06 Sep 2004 22:55 GMT
> I think the answer is that doctors try to follow the rule
> "first do no harm".

Primum non nocere
JimBob - 07 Sep 2004 19:34 GMT
> Anyone else here diagnosed with low Testosterone before being diagnosed with
> PCa?  I was.  My levels were around 187..... where 500 is normal.  I was
[quoted text clipped - 30 lines]
> Thanks!
> Mike

Mike,

There is one thing that folks with reasonable T-Levels for their age
don't understand and it's how absolutely rotten ( understatement ) you
feel if there is not enough testosterone in your system ( and oh by the
way exercise and anti-depressants don't do squat because they don't
address the missing hormone ). Finding the reason for low testosterone
is another discussion altogether and if you can't get your endo-doc to
start the process ( fairly complicated and I'm still working on mine to
do it ) you either gotta go with who brung ya' to the dance or go doctor
shopping all over again.

Mike, my situation was exactly the same as yours except that my T-Level
is not quite as low, although low enough ( about 300 ) to make me feel
like crap.  My endo-doc and primary-doc tried to convince me that it was
in the normal range( 241 - 827 ) based on the Quest Labs ref. tables
used for my blood studies.  I agreed technically but told them that
based on the few studies I found I should be in the 500+ range and that
a 300 T-Level would put me in the 80+ year old age bracket. Well I'm now
58 but a lot of the time I do feel like I'm a 100 !!!!

So here's my story which should elicit a few howls of protest or
whatever from the PCa neighborhood ......

I was 57 y.o. and after being diagnosed with the low T-Level in the
spring of 03 I received 2 TRT injections 3 weeks apart. When I returned
for my 3rd injection my primary said that he was going to do a DRE as I
had not had one in several years. He found a small hard spot, said no
more TRT and shipped me off to a very experienced uro-doc/surgeon in the
Philly area. OK, everybody out there that thinks that the TRT therapy
started Mike's and my PCa raise your hands ( wow, that's a lot ).

Anyway, I was broken hearted, not because of the prostate cancer but
because I had to give up the TRT therapy. I was feeling so much better I
was like a different person and I had started to function sexually
again. Frankly the PCa process was a piece of cake ( for me anyway ).
It was detected early ( sorry, don't recall the numbers ) so I did the
research, decided on RRP and on Oct. 30th, 2003 had the "slice and dice
w/ nerve sparing" and came out with my catheter and an excellent
pathology report. 12 days later the catheter was out. I was completely
continent from day one but erections were a problem. Not because of the
surgery but because of the low T-level.  I had been having a problem
with ED for a couple years before surgery and was just starting to
function somewhat normally again when the PCa was found and the TRT was
stopped.

So anywho, I did feel lucky to have had a successful RRP and uneventful
recovery with no after effects with the exception of the inability to
have an erection.  My uro-doc would ask me on each subsequent  follow-up
( 12/03, 3/04 and 6/04, all Undetectable PSA's ) if I was having
erections yet. My answer was "sorry, no gas, no go".

I broached the subject of TRT therapy with my endo-doc after my third
undetectable PSA follow-up. Well I'll be darned if there wasn't some
sympathy from him for my plight. He sent a copy of a recent study that
strongly suggested that PROPECIA ( Finasteride ) was of value in
insulating or protecting prostate cells from the effects of testosterone
to my surgeon / uro-doc and suggested that TRT therapy was OK along the
the administration of PROPECIA ( hell, my hair was thinning anyway so I
could kill two birds with one stone ).

Went back to the uro-doc/surgeon and danged if his thinking wasn't
pretty much in the area of Mike's original quandary. If there are still
PCa cells present there's a really good chance they're gonna make a
come-back anyway so he said that I could go ahead with a series of TRT
injections alone. Now I have to confess this was a quality of life issue
to me and it was made quite plain to me the medical effect of
testosterone on any remaining PCa cells but when you feel like &$%# from
sunup to sundown and occasionally in between you jump back on the TRT
wagon if given the chance.

So over the summer I had two TRT injections and damned if I didn't start
to feel human again. It does not happen overnight but something
resembling good health and a decent, even optimistic psychological state
slowly emerges and you feel part of the human race again. I restarted
the TRT therapy for a two-fold reason. First if I had the same results
as the first round of TRT it would be ( at least to me ) a fair degree
of objective proof that low T-levels were responsible for all my
symptoms that Mike described in his original post. Secondly was to see
the potential ( bad? ) effect it might have on my next PSA test in 01/05.

If all is good in 01/05 I'm going to start up the TRT therapy for as
long as possible including the PROPECIA. Get some protection from PCa
and some more hair but really just to feel like living again !!!!

I'm not posting this to start any arguments or to suggest one way is
better than another. We've all read the current material on suppling TRT
therapy to PCa survivors and the potential negative ( some will say
deadly ) results that can occur.  I am only answering Mikes post to say
that I have worked with a highly regarded PCa surgeon and there may be
other alternatives as medical knowledge is acquired and applied.

Luck to All,
JimBob
MH - 08 Sep 2004 00:16 GMT
> I'm not posting this to start any arguments or to suggest one way is
> better than another. We've all read the current material on suppling TRT
> therapy to PCa survivors and the potential negative ( some will say
> deadly ) results that can occur.  I am only answering Mikes post to say
> that I have worked with a highly regarded PCa surgeon and there may be
> other alternatives as medical knowledge is acquired and applied.

I'm certainly not *advocating* TRT for anyone, either, JimBob... and I
appreciate your thoughtful, lengthy reply.   Thanks for sharing your story.
I'd really like to know more if you don't mind pmailing me.

Thanks!
MikeH
domiha@hotmail.com
 
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