Farewell Old Friend

[marnieg46]

 ‘Cease to be men or cease to be’

He was a fit 50-year-old surfer when he received a shock diagnosis – advanced prostate cancer. Nothing could prepare Tim Baker for the treatment’s drastic, emasculating side effect

This frank article by Tim Baker, published in The Weekend Australian Magazine, is a profoundly personal account that delves into the real, dramatic and life changing impact of the effects of ADT on his life.   

An article that once again raises the million-dollar question that continues to be asked over and over…why so often people have to discover years later… that some side effects of ADT can be minimised with early intervention.   Tim writes “When I finally make an appointment with a men’s sexual health specialist…it is four years since my diagnosis and my libido and sexual function are essentially non-existent.  I am shocked to discover that something as simple as Viagra may have allowed me to maintain sexual function from the outset.  Why wasn’t I told.” 

In my opinion this is definitely an article better read in its entirety rather than reduced to a few paragraphs.   

 prost.com.au/wp-content/upl...  

[cujoe]

M from OZ, Many, many thanks for providing the link to this exceptionally frank description of one man's struggle to survive the challenges of ADT and PCa. Any readers here who are on ADT or medically castrate will immediately identify with his story. Men deprived of the chemical source of their manhood have to dig deep in confronting the many physical, mental, and emotional challenges zero T creates. Tim Baker has no-holds-barred expressed what all of us feel about PCa in general and much more specifically, "Chemical Castration".

However, I do take issue with his statements regarding high testosterone in younger men being a factor in PCa. I think Dr. Morgenthaler and others would make an opposing case that the high testosterone of young men is protective - and a major reason why they rarely get PCa. It is only when the level of testosterone drops with age that PCa usually occurs. That is also the reason I find it difficult to understand why men at risk for PCa do not have their testosterone levels tested along with PSA. Evidence indicates that men with low testosterone are the ones that are more likely to develop PCa - than are men with higher levels. And those with low levels are more prone to advanced, aggressive disease when diagnosed. Testing T levels along with PSA (+ free PSA) provides a much clearer early risk profile than does PSA alone.

As a case in point, I have a nephew who in his early 40s was diagnosed with low T and was considering TRT prior to being later diagnosed with PCa. Of course, it is unknowable if choosing to do TRT would have prevented or delayed the onset of the PCa. In his case, the good news is that eventually he had a successful RALP and seems cancer-free some 10 years later. The T-level dilemma is a bit of chicken and egg issue that has yet to be resolved. Unfortunately, there doesn't even seem to be any research focused on seeking the answer.

Thanks again to you and Tim for shining a very bright light on a topic many men are reluctant to openly discuss. Best to you and Ron. Ciao - K9 Terror

[marnieg46 in reply to cujoe]

Yep!...Pretty well the elephant in the room for many. I thought this article was one of the most unambiguous... 'let's call a spade a spade'... discussions of what is an awkward topic for many. I was sorely tempted to ask he... the literary genius... to do justice to capturing the essence of it but knew you were a bit busy at the moment. Had a fair idea you could be relied on to add your tuppence worth.

Interesting point you raise about the protective value of testostrone. Would seem logical but from your comment I'm assuming that the jury is still out on this one.

[B8ssist in reply to cujoe]

I think we have been duped. My PCP or my Urologist don’t even seem to know this information that a high T level is protective.

[cujoe in reply to B8ssist]

Hey, fellow AUSer, Just this past weekend, I was thinking I should check-in to see how things (the "thing") are(is) doing these days. I hope all is mostly 99 % dry for 100% of the time.

As for the high T being universally protective, I think Marnie's comment is probably correct about the jury still being out. A poll of most mainstream SOC-indoctrinated MOs and urologists would probably still report TRT being like putting "gasoline on the (PCa) fire" - but it seems to me there is equally compelling evidence that HIGH T is protective in younger males and also effective in about 1/3 of CR older men via BAT. Universal testing of T along with PSA would provide some evidence for which is the case.

Hope you are doing well and anticipating a fine Thanksgiving. Enjoy it!

Keep on keeping it Safe & Well, Young Man,

Ciao - Capt'n K9

[NPfisherman]

Hi Marnie,

Thanks for posting... A great article.... It is the one subject that is not covered enough in regards to MO's and their patients. There are a number of options for patients... pills, injections, sural nerve grafting, and penile implants... but I think many patients simply "give up" on intimacy, and try to find other ways to "be close" to their partners. For some, perhaps the thought of injections or more surgery if pills do not work is a bit too much for them. You look at your diagnosis, and find happiness in survival, but how does it add up in the issue of QOL

Of course, there is also the ADT and lack of libido/ emotional lability which plays a role.

What a crappy disease that we have... !!!!!

Dangerous Dave

[NPfisherman]

Marnie,

I think more men should read this article, and for those that suffer from ED, talk about it with their MO or Urologist for a referral. I would guess that many suffer from this post RP, but do not seek professional help. Perhaps, as high as 30-40%. Why??

The embarrassment is too much to talk about it. Incontinence...easier to talk about than not being able to get an erection and satisfy your partner... I know....we all have tongues and fingers.... Great... but...???

Why deny yourself and your partner the chance to connect physically on a different level...??

I thought this post would blow up, so to speak, but no...

Again, thanks for posting....

Dave

[marnieg46 in reply to NPfisherman]

Yes Dave, I agree. Although this topic has been 'touched' on many times both on the APC hub and occasionally here it seemed to me that Tim really just opened the issue up and explored it in more depth and with brutal honesty.

I think I do have a bit of an understand of why men don't seek the help because, if it's an issue that hasn't had to be faced pre PC, then when they are diagnosed there's a lot to take in and as the Bee Gees said 'stayin alive' is probably top priority. That coupled with the reluctance of Urologists to delve into the topic...just a causal reference maybe or passing on a booklet...just leaves people to their own devices.

It would seem to me that it's probably not until much later the real and lasting impact becomes a reality and then I suppose for some it's just one bridge too far and maybe too they are weighted down with other issues related to their condition. Every relationship is different too and if there aren't open lines of communication guess it's a bit tricky.

I can only speak to what it seems like things are here in Oz... maybe the US is different..but from what I'm told, unless a person unambiguously asked to see a sexual health advisor or is very direct in discussing their issues I think many GP's would just brush it off as one of the side effects.

In Declan's podcast, Tim raised the idea of a team to meet with a person after diagnosis but pre treatment/s and included in that team was a sexual health advisor...then that would seem like the ideal. Then the person would have the option of seeking more help or not. Guess we're a very long way from that though.

To go back to the beginning...yep a really great article...