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Re: Is treatment, loss of Quality of Life (ADT), worse than the disease?

BoB X, thanks for the reply. I agree with you 100% re the quality of life issues. I made the same calculation; I'd rather have 10 normal years, than 20 as something else. my story is here:

http://pub2.bravenet.com/forum/static/show.php?usernum=154144579&frmid=42&msgid=873212&cmd=show

My treating URO had another guy in his "umbrella" corporation that specialized in Andrology, and he referred me to him when he was uncomfortable keeping me on the TRT after diagnosis. this second URO has been awesome. truly.

I have done the "footwork" in my life; better diet and exercise, and they have done the rest. my PSA's are dirt-low, and everything else is grand (all things considered). the details are in the link to my post here.

Basically I am one year on AS and feeling (and doing) great. I feel I have made the right choice, and am fighting. I am not giving up a normal life without a fight. I am wiling to take some risk. when you read my story, you'll understand why.

thanks for listening. I will never give up.

Re: Is treatment, loss of Quality of Life (ADT), worse than the disease?

Walt,
Made my last post before I read your reply. Thanks so much. I am glad there are others out there in the same boat.
B

Re: Is treatment, loss of Quality of Life (ADT), worse than the disease?

BoB X, you are onto the the SAME thing I thought!!!

Normal guy, not on TRT, gets diagnosed with low-volume, low-risk PCa. they don't put him on hormone blocking therapy! so, why would a guy on TRT (like me and you) diagnosed with same, have to go cold turkey!?!?!?!?

it was difficult for me to justify (especially in light of the pain, and the fact that I was at the very end, of that long dark tunnel. Looking back, I'd give myself only a few more days and I probably would have punched my own ticket. it was that bad. :(

but I have arisen like the Phoenix!!!!!!!!!! I will, now, never give up the fight. Ever. :-)

Re: Is treatment, loss of Quality of Life (ADT), worse than the disease?

Walt, you are the man. I like your spirit!!
Bob

Re: Is treatment, loss of Quality of Life (ADT), worse than the disease?

thanks brother. may we all get through this together, I say. :)

Re: Is treatment, loss of Quality of Life (ADT), worse than the disease?

Hey Walt,
Just finding my way around the website. I read your story. So you were 3+3 and still on AS. Would you change your mind if you were 3+4? I think Terry on the board was originally a 3+4 and went for active surveillance. There are docs who will put you on TRT with a 3+4 but that is with good informed consent. I am ok with the brachy and EBRT but I just don't want ADT. There are a host of UROs who will not put you on ADT with a 3/4. Again not to be rhetorical but what is the difference for a man with a 3/4 with a T level of 500 vs a man with the same Dx but with exogenous T to give him the same level as the other man? Why is one man made to suffer and the other isn't? I have been really digging into the literature and it is really a mixed bag of thinking with not a lot of good double blind RCT.
Bob

Re: Is treatment, loss of Quality of Life (ADT), worse than the disease?

Hi BobX

You wrote:There are a host of UROs who will not put you on ADT with a 3/4.

That's not surprising since, as Peet in a recent post said, they're mostly knife wielders. However, when I presented myself to my urologist, who by noow does surgery with the DaVinci method, I was 77 years old, so he wisely decided I had to go with ADT. My PSA at the time was 800 (800) and I had already lost my libido, so the other side effects such as hot flashes, weight gain, etc. have been tolerable. My primary doctor is willing to prescribe T, but I feel my QOL is good enough.

BTW I see Walt, who uses supplements, has put out an invitation to anyone who wishes to ask him questions. You could ask about supplements for mental clarity. I bet he could name a few that are out there if you had to discontinue the TT.

Jack

Re: Is treatment, loss of Quality of Life (ADT), worse than the disease?

Hey Jack,

Thanks for the response. This game is such a personal matter. All men have to make their own personal decisions as to what is best for them. I don't think there is any doubt that financial remuneration is a very significant factor in many doctors decisions regarding treatment. All I know to say about that is "buyer be aware". I think there is a place for ADT. I just don't want it for me at this point in my treatment especially with lack of hard core data. I know the ramifications for me.

My plan is to go without ADT as long as possible. I still enjoy many aspects o being a "man". I do not mean that in a pejorative sense of the word at all for those on ADT. Regardless of that I highly value mental acuity. When would I acquiesce to ADT? Probably with bone metastasis. I agree with Patrick Walsh with respect to the fact that there are no studies that show an improved survival with early vs late ADT. You can find studies to support both points of view.

If I had a PSA of 800 and had already been without "T" at the age of 77 I would probably do what you did. I find it interesting that your PCP would put you on T.

I have talked to Walt about the T dilemma. He is a good guy and is helpful with answering questions. Hey we are all seeking help in our own way.

Wish you the best!!

Thanks,

Bob

Re: Is treatment, loss of Quality of Life (ADT), worse than the disease?

Hey Jack,

I started about 12 years ago. I stopped maybe 11/2 years ago for about 4-5 months. I experienced a progression of symptoms. I stay pretty active and work out. I lost weight in muscle mass. The most difficult aspect for me was my thinking started getting a little cloudy. I was not on my game. That is a life changing predicament in my profession. The symptoms progressed gradually and the recovery was gradual for me. i seems it rook about 2 months to get back on top of things. Whether I stopped cold turkey or not I think i would have still wound up in the same place. At my age I am sure I will naturally lose some muscle mass. Losing mental acuity is a different matter;
Thanks for the feedback.

Bob

Re: Is treatment, loss of Quality of Life (ADT), worse than the disease?

G’day BobX,

Your post generated an interesting exchange I think. I will not join in the “T or not to T” debate for a number of reasons, but thought I’d just comment on a couple of your remarks

If T is that bad why not start early ADT on all men. I can understand ADT once PC has metastasized to bone but I have failed to find any literature that supports an increase in survival rates. Or let's say the literature is divided with no definitive conclusions drawn.

This is a question I asked a number of times in various Forums over the years when I was more active (and when there were some excellent debates which are less apparent now). It seemed so logical to me that if prostate cancer was indeed a chronic illness, as it clearly is in the majority of cases, and if T was in fact what fed all cases, then surely the sooner you cut off the T with ADT – intermittent maybe - the better? The main arguments against were to point to various studies highlighting the dangers of ADT, mainly as far as cardiovascular events were concerned. But those studies were generally speaking in the use of ADT by old men and very ill men – and they often presented variances in outcome. Where, I asked, were the studies for younger, healthier men with early stage and low GS tumours. The answer seemed to be that there were none. So essentially what was being used to oppose early ADT treatment was a medical belief based on extrapolated data that might or might not be correct. As time went by and some of the genetic studies started coming out I came more and more to believe that the entire T debate may be built on some pretty sandy foundations. The multiplicity of prostate cancer variants combined with the extreme variability in physiology of individual makes it all but impossible, in my opinion, to draw any good conclusions about T and Pca with out current tools and knowledge.

If someone were to tell me that I can live until 85 on ADT with all of its ramifications vs 75 on TRT with a high quality of life I would choose TRT until 75. I know that sounds anathema to many but these are personal life decisions each man has to make for himself. The irony is that no can can show me any data to prove they are correct. With TRT I may outlive the ADT guy.

I have a similar outlook, which is what drove my decision making – let me have the fifteen years that I thought might be the maximum on offer with none of the potential negative consequences that seemed to be most likely associated with any therapy I could have, especially as I might have the same number of years with the negative consequences, since there are no guarantees in the prostate cancer business.

Just one thing though. There is that old joke about who the heck wants to live to 85 – usually asked in jest by younger men. The answer is men of 84. As I have now passed my initial target of 15 years, I believe I would rather like to hit my secondary target of 20 years. And with three more to go, perhaps I’ll make it.

Good luck to you whatever path you take. In the absence of any good data you must take the decision that suits you and your life best.

Terry in Australia

Re: Is treatment, loss of Quality of Life (ADT), worse than the disease?

Hey Terry,

Thanks so much for the kind reply. I stumbled on this website in a serendipitous way. I was actually on another prostate forum and happened to read some of your posts. I followed your links and as result read your story. You have a pretty amazing story and a very refreshing website. I had actually briefly visited your website but not in a serious way. I must say with all due deference you were and are a true maverick. You went against the establishment in so many ways. Excuse the pun but that takes "balls" especially going up against the so called medical gurus.

I am fairly new with the PC business since I have a relatively recent Dx. It is not specifically my field of expertise. However, I do have a decent knowledge of how the medical world operates. In the world of evidence based medicine I have an appreciation for systematic meta analysis of randomized controlled trials. Here is the rub. The more I read about PC the more the data seems elusive. There are studies that support any perspective but the hard data is not there for the most part. We can each use the data to support our thesis. In the end much is not known.

My initial attempt on a PC forum was a bit daunting. I used a pseudonym in which I was somewhat chastened. I have my reasons for not wanting my personal information going viral but I do no mind talking with anyone on a personal basis. I think there is a strong visceral emotional element for all men when initially Dx with PC. It doesn't exactly make your day. I think many times all a man my want is some emotional support. We are barraged by a plethora of information feeling we have to make some rapid decisions. That is engendered to a large part by the medical establishment. Obviously my first post was about ADT and TRT. Wow, I got hit pretty hard. I felt I was maneuvering against the Orwellian "Big Brother". Having said that I have found there are many men who feel the same way I do. I have to give kudos to men like Abraham Morgentaler for confronting mainstream urology. You have done the same thing. I am sure you have accumulated a few bruises along the way.

My problem with the TRT is that men who have been on TRT are in a trap with respect to PC. I can personally speak for its positive effects in my life. My life would be radically changed without it. After you have been on it for so long your testicles have atrophied to the point where there is no going back. A eugonadal man with a localized cancer can refuse ADT. In fact, many urologists today would not even recommend it. Although it seems apparent many do. Whether a man chooses ADT or not is his personal decision. He can refuse it. However, for the man who has been on long term TRT, not keeping him on TRT just because he has what appears to be a localized cancer is the same as functionally putting him on ADT. By default the hypogonadal man is penalized. There seems to be the proverbial "gas on fire" fear. We could each argue the data. Morgentaler has a very compelling point of view as expressed in his book Testosterone
For Life. TRT for men with PC or who have been successfully treated for PC who desire TRT are in the position of frenetically trying to find an MD to prescribe it or having to beg for TRT. I read with empathy about the men whose lives have been changed by ADT and they beg their doctor to prescribe it to no avail. Again the eugonadal man does not have this same problem. I have read the stories of many men on this website.

We see the commercials on TV and the internet about TRT and its benefit for truly hypogonadal men who truly manifest symptoms of low T. The irony is once PC is even intimated they are thrown under the bus. They have lost their voice to the paternalistic perspective of urologists who are unable to put the hard core RCT data on the table.

I am not derogating those brave souls who choose ADT. I also think there is a time and place for it. My argument is to allow men to have a choice with respect to the possibility of TRT in the treatment planning of their PC. I have not heard anyone espouse this problem. I think perhaps men may be apprehensive about it for fear of reprisal. I also think that doctors are hesitant for possible litigious reasons. However, in this day of informed consent I think they have a weak argument.

Anyway thanks for a very nice website that allows us to voice our concerns. You have truly been a leader and model with respect to your travelled path. You did this 17 years ago? Thanks for being a pioneer and carving a path through the wilderness of PC.

Bob



Re: Is treatment, loss of Quality of Life (ADT), worse than the disease?

well said Sir!

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