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Re: The decision for waiting with a borderline diagnosis

Kevin with your situation both RP and EBRT are both curative options. Cure is defined as 15 years of disease free progression. RP is quick but major surgery as Bill has explained. EBRT is over 7 weeks, time consuming, and very tiring physically in the last 3 weeks. Comparable outcomes occur with both treatments. The Centre I attended has a 90% cure rate and that is for all grades of tumours. A mate of mine in Qld had a Gleason 10, T2C, PSA 12, and had EBRT a year before me. His PSA has been under 0.5 for the last 4 years (he had 3 years of ADT post EBRT). His chance of cure was only 30%, but he took it and has done remarkably well.

Think long and hard Kevin cure and a good quality of life, versus protracted anxiety with advanced PCa as the likely outcome.
John

Re: The decision for waiting with a borderline diagnosis

John Bonneville, how time flies. It seems like only a few days ago you said in part:

C Ya in another 5 years Terry..... Terry I did not answers all your questions. Next time round!

That five years has passed like a flash.

You say you didn't answer all my questions, but in fact you didn't answer any, so since you are back again, can you please do that now.

And while you are at it, can you tell us where you got the definition of 'cure' from? No doubt, scientifically minded as you are, you will be awre of long term studies that show disease progression well after 15 years. And could you give us the link to the published results of your Centre with the amazingly high 'cure' rate - it would be very helpful for all of us to see some published facts as opposed to unsubstantiated claims.

Terry (protracted anxiety free) in Australia

Re: The decision for waiting with a borderline diagnosis

Terry Herbert
John Bonneville, how time flies. It seems like only a few days ago you said in part:

C Ya in another 5 years Terry..... Terry I did not answers all your questions. Next time round!



Indeed I did Terry, but Kevin need some extra info, and your misinformation post could not go unchallenged. So get to it and start making the days off on your calendar till we cross swords again. And no checking out early you hear.
John

Re: The decision for waiting with a borderline diagnosis

Heya fellas, long time lurker here but this thread made me post. :) (I've have not written "my story" for the web site yet, but I will)

I've just turned 50 and am on AS. Diagnosed May 2012. Gleason 6 (3+3), 3/12 cores positive at 10% 15% and 25%. Progression T1c ( T2c?) nodule felt during DRE). PSA's were 1.0, 1.6, 2.8 (<---causing biopsy 5/2012)), 1.7, 1.25 (yes!!) and last one was 1.5.

Had been losing weight since 2009, but upon diagnosis, went all out, and lost 50 lbs since. Dramatic healthy eating changes, and vitamin supplements. (all the info re that is available on-line, ask me if you have questions). Also increased excercize (walking 3 miles a day, taking the stairs, simple things).

The great irony is, since diagnosis, as a result of those changes, I have never felt better in my life. Sex with my wife has never been better (and the resulting benefit to our overall marriage!). And most importantly, I've knocked off a bunch of looming co-morbidities (obesity, diabetes, high blood pressure, coronary disease, ETC.!!).

My URO is cool with my decision for AS. he's great, and he's supportive, as is my GP who said to me "you are the poster boy for AS". :-)

Regarding the PSAs mentioned above, I personally feel that 2.8 high was an outlier. My original URO gave me a DRE the afternoon before that test, and had never advised me to abstain from sexual activity for 72 hours prior to the test. I'm quite sure the missus used my body before that high PSA. (all subsequent tests I made sure that was followed).

So, for me, it was quite empowering to see that PSA drop, and that 1.25 was priceless!!! :-) Just had to share.

Glad I read about AS here (and elsewhere), and I am glad I did not rush to judgement / treatment.

Walt Green
USA

Re: The decision for waiting with a borderline diagnosis

Kevin,
I've a few thoughts here, and my only area of knowledge is with respect to surgery. If you get surgery with a high quality surgeon then you should have no incontinence issues (unless you're in an unlucky 3% or something) since you are at an early stage. Due to the early stage, surgery should be able to spare all the delicate erection control nerves around the prostate. And you should retain good sexual function, though it may take some time to recover well. The numerous early-stage post operation people I know have all recovered erection capability just fine. But you cannot be assured of this.

A consideration related to waiting is the extent of the cancer. In my case the cancer had developed enough (though my PSA was just 7.1) that it had made some minimal breach of the prostate boundary on one side. Hence the surgeon had to take tissue outside the prostate on that side, and I lost half the erection nerves in the process. So my post-op erection capability is diminished. The gist being that there is some downside to waiting if you are considering surgery. Many men in your situation do get surgery now for a reason, not just because they are scared or are made to feel that they must act.

I think a key issue for you is the progression rate of your PSA. If it has risen slowly, then I think AS is certainly reasonable. And I think your diet can make a difference. So I can support your inclinations.

Re: The decision for waiting with a borderline diagnosis

Hi Bill,
Sorry to hear of your operation outcome. We all hope it doesn't happen to us, but the risk is there, I agree.

However, impotency or incontinence is not as much a concern to me as this cancer's potential to shorten my rather pleasant life. A lot of my hope is centered around keeping what I have already in good condition.

Re: The decision for waiting with a borderline diagnosis

Kevin,
I think you and I have much similarity in our priorities. Since my surgery in 2007 my life quality has been excellent. And my PSA is undetectable. I did have to move to action more quickly than you because my Gleason was 7 and my cancer was more widespread in the biopsy. My very experienced urologist said he'd support whatever course of treatment I chose, but he strongly advised me not to delay due to the specifics of my situation. He prognosticated "you're going to come out of this feeling like you dodged a bullet." Right he was. My wife and I did a few weeks of research (on surgeons throughout the US) and went forward quickly thereafter. We chose well, I was 65 then.

I have elected to stay away from any hormone treatments precisely because I do not want those side effects. Such as reduced muscle mass, weakened bones, less energy. I live an active athletic life still. Fortunately.

You have every reason to be optimistic about your future. And you don't have the need to rush that I had. But watch carefully in the meantime.

Re: The decision for waiting with a borderline diagnosis

You might like to look at the UK's NICE guidelines, which detail the recommended practice for different conditions, plus why it is recommended. Having looked at many many other sources of information, I found the recommendations to be rational and unbiased. See the links on http://www.nice.org.uk/CG058

For my own part, I decided that since (to the best of my knowledge) I'm going to die, how long I live is less important than how I live and die. One upside of PCa is that I'm less likely to get dementia and be a burden on my daughter. Hence, given the reasonable alternatives, I made my treatment decisions based on how side effects would affect my life, plus the probability of the side effects occurring, of course.

I hope that helps you make the decisions that are appropriate for you.

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