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Re: The decision for waiting with a borderline diagnosis

I am 67 years old, learned two months ago my older brother, 74 years old has prostate cancer. I purchased Aaron Katz's book. Intrigued with his attitude of AS. My question, I now want to begin the exploratory process of determining if I have, or could have the disease. Dr. Katz states I am in the highest risk group, aside from African-American males. I know the PSA test is my first step, but I am trying to formulate a strategy as to what kind of doctor I should visit. I live in southern Florida, I am googling "best doctor" strings but wonder is there a better way. Or, if someone knows of a good doctor.

Thanks in advance.

Re: The decision for waiting with a borderline diagnosis

Hi Kevin,
It has been many years since I have posted on this site. Perhaps Terry may remember the odd discussion or two we had regarding the need to undertake medical intervention, as opposed to AS. The issue of criteria was our main point of divergence.

From the criteria you have given, 64, healthily, PSA 6.4, 30cc prostate volume, Gleason 3+3 with two cores at 40% (how many cores were taken, what locations (apex, mid, lateral, and base), and histology results for the other cores?) Staging?, sounds like (t2a), and DRE exam result, ? any nodules. I guess I am trying to highlight the dangers inherent in self assessment albeit somewhat informed your case Kevin.

AS is appropriate for someone with a low grade Gleason score and the adenocarcinoma being confined within the prostate. Tumour volume (T1c to T2a, b, or c) is also a consideration as there is only so much capacity within the prostate before extra capsular penetration occurs. But even with extra capsular penetration, a person in their mid to late 70's may still be a good candidate for AS due to their life expectancy.

So should a younger person in their mid fifties roll the dice and go for AS. Well this is something the Terry and I had in common. We were both diagnosed in our mid 50's. Terry's PSA was 7,2, staging T2b and a Gleason 7a, which I assume was 3+4. My PSA was 6, staging T2b, Gleason 7 4+3. So Terry had the higher PSA but I had the higher grade Gleason. I do not know Terry's core sample results. I had all left side cores positive for adenocarcinoma, core density ranging from 35% to 65%. I also had a nodule on the left apex which was 65%. My decision was made a little easier in that my physicians were former colleagues. Their advice was quite clear, either treat or you may be dead within 5 years.

Like Terry I also had co-morbidity, two of which were potentially life threatening. So I thought long and hard about AS. Perhaps one of my other conditions would take me out. But my wife also an ex Health Pro had other ideas. She advocated treating what was in front of us and dealing with other issues as they arise. So as good husbands do, I agreed to her wish. I underwent 9 months of Androgen Deprivation, followed by 70gy of EBRT, followed by a Turp. I was diagnosed in 2006, my post EBRT PSA'a have all been under 0.1 and my co morbidity is under control.

I guess my background had a bit to do with my choice but given my criteria, extra capsular penetration coupled with mets was the most likely scenario. It was just a matter of time. I can think of much nicer ways to pass away than PCa.

So Terry and I took different pathways. If Terry passes away from something other that PCa then he has made a good choice. Even if not, he has out lived his life predictions. For me it now seems most unlikely, though not totally out of the question of course, that PCa will get me. This issue that I had prostate cancer is but a distant memory these days. I have a good quality of life in every respect.

So what about you Kevin? Bit of a balancing act isn't it. After reading your posts and Terry's, I just though you needed another perspective ,

I trust I did not ruffle your feathers to much Terry and I wish you safe passage on your journey.
John

Re: The decision for waiting with a borderline diagnosis

Hi John,

>> I guess I am trying to highlight the dangers inherent in self assessment albeit somewhat informed your case Kevin.<<

Thanks for your compliment, but I doubt whether I'll ever be completely informed. We're talking about my 3 months study of less than an hour a day, vs a specialist's many years of full time study plus real world experience every working day. How anyone at my level could possibly make an informed decision seems particularly risky.

But there is a nagging hope that since the tumor came from somewhere, that it could be returned to somewhere through a change in lifestyle. I'm not alone of course - I note that practically everyone makes huge diet and exercise changes when they get the news. Whether that's good enough for all the different individual DNA is another matter.

>>From the criteria you have given, 64, healthily, PSA 6.4, 30cc prostate volume, Gleason 3+3 with two cores at 40% (how many cores were taken, what locations (apex, mid, lateral, and base), and histology results for the other cores?) Staging?,<<

I have most of that info from the full notes I requested from my surgeon, but for this post it seemed at the time to be irrelevant based on the broad summary I was given and how it measured up to the standard for AS.

Problem is finding someone empathetic and neutral for my questions, and I love the phrase 'occupational bias' that describes this trip so well. Very few practitioners cross the line from pills to natural healing, or even entertain a combination of both. I'm always going to have problems getting unbiased advice, though Terry seems to cross the divide quite well.

One of the annoying parts to my decision is the morbid discussion on longevity. My age at 64 1/2 means that I have some time to go, yet based on average life spans when I reach, say 75, it will be ok to relax the boundaries. But what if I wanted to live to 100? Then I would have to radically change my strategy. Prostate problems would only be one of several problems to face at that level.

So John, I appreciate your view, even though it hasn't helped in cementing my decision! There will always be well regarded, well intentioned views and experience that need to be listened to carefully. No wonder most people take the medical option - it's a confusing and conflicting world of hope and fear!

Re: The decision for waiting with a borderline diagnosis

Kevin it is simply a matter of looking around to find someone who will give the answers you wish to hear. But as Terry,s experience shows, live long enough and you will turn to conventional medicine, although I note he currently is having a break from treatment. The sad thing is by the time that occurs the disease has already progressed to an advanced state. Your PCa is curable by conventional medicine at present. At your age with AS you will live from PSA test to PSA test with PCa always on your mind, and when you reach an advanced disease state you will look back and wonder at the prudence of the path that you took.

Sorry to be so blunt Kevin and my best wishes for your chosen pathway.
John


Re: The decision for waiting with a borderline diagnosis

John,

I see that there is no apparent change in your views on AS despite the time that has passed when you left this Forum in December 2009 expressing your dissatisfaction at the way the Forum was run,saying:

Terry we have discussed misinformation before, and you know I have strong views about the spreading of. Henceforth I shall no longer post on this forum.

My feathers were not ruffled then and they are not now, but in the interests of reducing the amount of misinformation, to a degree, can I ask you to support this statement which you have now made:

For me it now seems most unlikely, though not totally out of the question of course, that PCa will get me.

I certainlyhope that this is so - all evidence I have seems that it probably will be so. But what would be useful is a reference to an independent long term study showing just what the likelihood of disease specific mortality is in a man with a diagnosis similar to yours choosing a treatment option similar to yours. The normal life expectancy of a man your age is probably of the order of 20 years, and you are six years out of therapy so preferably the period of the study should be about 25 years or longer. In the absence of such data your guess as to your likelihood of death by prostate cancer after your choice of therapy is as good as mine for my choice (Although there is one long term study demonstrating a fairly low higher level of disease specific mortality for AS over 25 years compared to surgery).

You also trot out the old saw At your age with AS you will live from PSA test to PSA test with PCa always on your mind, and when you reach an advanced disease state you will look back and wonder at the prudence of the path that you took.

This assumes that

(a) there is an inevitability about the progression to advanced disease and death by choosing AS and

(b) that only AS requires regular PSA tests and that with AS prostate cancer is always on the mind.

As to the first of these interpretations, there are many studies that show quite clearly that the majority of men who choose AS will die from some cause other than prostate cancer. As Dr Willet Whitmore said many years ago: “Growing old is invariably fatal while prostate cancer is only sometimes so.”

As to regular PSA tests, it seems to me that you are most likely having regular PSA tests, as is the case with the majority of men who have had treatment. It seems too that Pca may well be on your mind – why else would you return to a prostate cancer forum?

Regards
Terry in Australia

Re: The decision for waiting with a borderline diagnosis

Hi Terry it has been a long time. It is good to see your tiger spirit is still there. Your raise a number of points which I shall seek to address. But first I think it timely to reflect on your own journey thus' far. So lets go back to the beginning of your story, which is pretty much where Kevin finds himself now. Let's look at what you said back then.

At that time you summarised your current regimen as follows:
- reduce intake of meat, specifically red meat, ideally becoming vegetarians
- reduce intake of dairy products and fats
- cut down or out irritants such as coffee and spirits
- pay more attention to dietary requirements – more fruit, fresh vegetables etc
- take vitamin and mineral supplements – Vitamin C being a major item; take anti-oxidants
- increase exercise levels [I walk my two dogs over the mountains behind us for a minimum of an hour a day and usually longer] and to lose weight [I lost about 15 kg, but I needed to]
- meditate and "weed the spiritual path"
- reduce stress
- create a visualisation of the disease and its effects
- take some prostate-specific herbs, such as Essiac

Simplistically, my whole approach is based on the premise that in normal circumstances, the body's immune system and other mechanisms will deal adequately with cancer.

Upon reading the above I realised how well intentioned, but absurd, your method of dealing with cancer was/is. Do you still hold the same views?

In Feb of 2001 you went on to say, "if I were to present for an examination today, I would not be diagnosed as having prostate cancer".

Unfortunately by mid 2005 your PSA had reached 24.9. And you stated that, "clearly action is required now and I will be seeing my oncologist as soon as I can get an appointment". Sadly, despite several years of a good response to ADT, you are now have hormone refractory prostate cancer. But I think you have a bit more mileage in you given the new agents coming online for advanced PCa.

Lets be realistic Terry, your earlier natural therapies did not turn out quite as you planned and thus you turned to conventional medicine. Were it not for ADT your journey would have already ended.

Ok Terry my whole critique regarding you and your site revolved around the issue of misinformation. Now I know you have not actively sought to influence other person's treatment decisions, but none the less, the you have beaten the odds, to use your analogy, may be the catalyst for delaying treatment for other men, which could potentially cost them their lives. Hence the reason I sought to distance myself from you and your site. But having said that, I have the utmost admiration for the work that you have done, we just have differing perspectives.

So why did I drop in? Well I have to confess that I have followed your journey over the years and I am saddened that what I perceived for you back then, has come about. If ever there was a time when I wanted to be wrong, it was about you. So time for me to shuffle off. C Ya in another 5 years Terry.
John

P.S. Kevin you have time on your side but only for so long. Use it wisely.

P.P.S Terry I did not answers all your questions. Next time round!

Re: The decision for waiting with a borderline diagnosis

>>Kevin it is simply a matter of looking around to find someone who will give the answers you wish to hear.<<

You're right of course John. I'll side more happily with a theory that fills the empty spot in my reasoning. But I'm not averse to hearing the other side and acting on it. However it's the sheer weight of data against my decision that is making it difficult to figure out. It's times like this when 'going against the crowd' could be hugely wrong.

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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