Prostate Cancer Survivors

 

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Re: The decision for waiting with a borderline diagnosis

Terry, I appreciate your lengthy reply, and of course I agree with your points. I've been reading this forum since my diagnosis and followed your posts, but there seem to be few around with your beliefs.

There's always a tendency to agree with someone who holds your view, and I'm not immune to that. And opposition is hard. One of the reason I posted here was because my surgeon (not my surgeon just yet though!) brusquely pushed my line of questions about AS away, preferring to recommend seeds.

My wife, a nurse some 40 years ago for a short period, also follows the mainstream view. White coat is good, independent thought is bad.

So I face some opposition there from two very important people in my life. Most others in my family don't hold a view, they just want to see me 'get better' and live long. Nothing unexpected I guess from the people who love you.

But it's hard taking a stand against surgery of some kind, especially when the outcome - one way or the other - is uncertain.

I've never been one to avoid decisions, and while I poll the crowd most times, this has to be my own destination. I'm encouraged by you and many other sites which promote such independent thought, while still being mindful that elsewhere I employ experts to fill in the gaps in my knowledge and experience... but here I'm casting them aside for my own amateur reasoning.

One part of me asks whether I should look for a sympathetic professional, the other says that a pleasant personality is no guarantee of a good outcome.

And so the battle rages...

Re: The decision for waiting with a borderline diagnosis

Terry, a quick word to say that I've re-read your story with some enthusiasm. It got buried in all the info I've been trying to absorb over the months, but since reading it again I have a renewed interest in taking the AS path.

What makes me curious - wonder what would have happened if you didn't get diagnosed and carried on through the 16 years at the same rate? In the same vein, how long have I had my own symptoms and would they have mattered if I didn't have the problem that exposed the high PSA?

What a pity we can't go down alternative paths at the same time and choose the one that works!

Re: The decision for waiting with a borderline diagnosis

Kevin,

Before moving to other issues, let me respond to your ……. wonder what would have happened if you didn't get diagnosed and carried on through the 16 years at the same rate? I would have been diagnosed in 2004, eight years after my actual diagnosis when I had the TURP (Trans Urethral Resection of the Prostate) to relieve the urinary problems associated with BPH (Benign Prostate Hyperplasia) and my enormous prostate gland (estimated at that time to be over 120 gm – about four or five times the normal size. Adenocarcinoma was found in about 20% of the material removed from the gland with a Gleason Score of 3+3=6 – the same as the GS of the original diagnosis.

Here go some of the other points:

1. ……how long have I had my own symptoms and would they have mattered if I didn't have the problem that exposed the high PSA? No one knows how long it takes for adenocarcinoma cells to form sufficient mass to be found and identified in a needle biopsy. The broad rule of thumb which many people seem to accept as applying to the indolent form of the disease is that it takes something like 20 years to develop to that stage, so there is a good chance that these cells have been mutating for many years. There was another theory that it would take about twenty years more for the disease to become life threatening, although current studies seem to point to this time period being a little longer than that. I always find the very broad statistical data in the SEER database of interest (while acknowledging that, like all data there is a deal of rubber in the figures.) If you go along there you’ll see that although the median age for diagnosis is 67, the median age for PCa death is 80 (so half the men who die of the disease are over the age of 80!) with 90% of deaths being men over the age of 65. Life expectation for a man of 64 is 17.92 years.
2. What a pity we can't go down alternative paths at the same time and choose the one that works! It is indeed a pity we can’t do that. But the next best thing is to look at the studies which match, as far as possible, groups of men with similar diagnoses and compare the outcome. Doing this shows that there is very little difference in mortality for men with indolent disease no matter what treatment (or lack of treatment) they choose.
3. There's always a tendency to agree with someone who holds your view……. my surgeon (not my surgeon just yet though!) brusquely pushed my line of questions about AS away, preferring to recommend seeds…….. One part of me asks whether I should look for a sympathetic professional, the other says that a pleasant personality is no guarantee of a good outcome. A pleasant personality doesn’t exclude a competent doctor!! I said all along that, having made up my mind, based on what I had learned that AS was my choice, I would keep looking for a doctor who would discuss my decision with me, and either show where my non-medical reasoning was incorrect or accept why I had made the choice, without necessarily agreeing with it and help me along my journey. I succeeded and have had a series of doctors as I moved around the world who met my criteria.

Re: The decision for waiting with a borderline diagnosis

>>I said all along that, having made up my mind, based on what I had learned that AS was my choice, I would keep looking for a doctor who would discuss my decision with me, and either show where my non-medical reasoning was incorrect or accept why I had made the choice, without necessarily agreeing with it and help me along my journey. I succeeded and have had a series of doctors as I moved around the world who met my criteria.<<

Is there a quick criteria for finding an empathetic yet efficient professional? I've had little to do with anything medical for the last 60 years, and this last saga has opened up a whole new world.

Going to a doc and asking their stance on your case would seem to put them in a delicate moral opinion. The hippocratic oath they've taken would suggest that each of them would try to do the best they can, even with their various occupational biases.

Re: The decision for waiting with a borderline diagnosis

One of the things you could do in trying to track down a doctor who is up to date with the latest studies and information (and is therefore able, within his Hippocratic Oath, to support AS in suitable cases) is to use the filters in the SURVIVORS STORIES to identify men who have chosen AS who might live in the same area as you do and ask them.

I believe, from all the stories and mail that comes past me, that there are many doctors who recognise the fact of overtreatment, verified by so many studies. It should not be too difficult to find one.

One of the aspects of this disease that has been of great interest for me is to see the movement away from that enunciated by the likes of Dr Catalona and his arrogance and who has this gem on his Q&A site:

Q: Do you feel that a radical prostatectomy offers the best chance for a "cure" of prostate cancer?
A: Yes, I do. That belief is based upon my own published results, the research literature, my own prostate cancer screening studies, and my professional experience.


Note that his 'belief' is based mainly on his own experiences, and that he apparently ignores or gives no weight to all data and studies that are not his own and which present information that apparently clashes with his beliefs. Medicine should not be based on personal beliefs but, as far as is possible on scientific data.

Re: The decision for waiting with a borderline diagnosis

Well, no luck with a nearby doctor in New Zealand. And remarkably very few AS on the list here anywhere with my PSA and GS, a mere half dozen or so. It's obviously not a popular option and as usual in my life I don't seem to be following the crowd with my decision. (I've actually made the decision for AS today based on a roundup of all the info I've been looking at so far, and await the onslaught of opinion!)

One of the factors is that I handle stress quite well and am quite pragmatic - though I'm not a fatalist by any means - so events like a fluctuating PSA at every test won't unduly bother me.

I'll keep searching, maybe send exploratory emails to several practitioners asking for referral advice.

Thanks Terry for your help. It's an interesting way to spend the rest of one's life!

Re: The decision for waiting with a borderline diagnosis

Hi, I am in California, and at 58 years old, my Uro offered me AS as an option. I was diagnosed in Aug of 2012, 3 out of 14 cores, all G6. My Uro used Color Doppler Ultrasound during Bx, and also as part of AS (every six months). Also, PSA every three months, DRE every six months, PCA3 once a year, and biopsy every two years. I met with a surgeon who also mentioned AS as an option, though he felt that it is just a matter of time as PCa is not going away by itself. I have an appointment for my first CDUL post Dx on March 1st. Mu PSA has been fluctuating between 2.1 to 3.6 depends on the Lab (i have been tracking my PSA since 2003).

Most of the time I am not thinking about it, but it does creep in and it it is not pleasant. My initial reaction to PCa is to remove it from my body,but a lot of readings helped me decide to take a chance and wait it out hoping for new treatment that will have less SEs. I have also learned that progress in this field comes very slowly. Lots of promising news/research usually faded and never made it to the success stage, not very encouraging. Somebody started a thread on another website re AS, one of the valid point against AS is that Bx is not always accurate, often time G6 turned into G8 after surgery. It makes me nervous whenever I am reminded of such fact. I think AS is much more accepted here in the States, lots of formal AS programs offered at PCa centers including UCLA, UCSF, and USC in California.

Another issue in following AS is about diet and exercise. I find it very difficult to follow both. It is hard to change your eating habit.

I am still pretty new to AS, do not know how long I will stay on the program.

Re: The decision for waiting with a borderline diagnosis

Terry, what do you think my chances are of getting a doctor who will accommodate me in these ways:

- I want PSA and DRE tests every 6 months. If a prostate tumor is as slow growing as everyone says, we'd see more definitive results over in a longer timeframe. And a longer period between tests would be less stressful.

- I don't want a biopsy at any stage except when a consolidated history of PSA doubling has been well established. I'm selecting that criteria because it seems doubling is still not a solid indicator of spreading cancer, and I believe as far as invasive surgery is concerned, less is more.

Now I'm really pushing the boundaries! But I'm offsetting that with a stricter lifestyle a la Ray Kurzweil and Thomas Mueller - without going into the realms of crazy lamb placenta injections, sleeping facing north, magnetic bracelets etc.

I have a feeling I won't get any professional to stretch the AS timings, but I don't want to opt out of medical support entirely because of my radical behaviors either.

Re: The decision for waiting with a borderline diagnosis

While the question is not directed at me, I would like to express my opinion on the PSA test. To me it is fairly easy to get it done. While PCa is supposed tobe slow growing, you never know when it is going to turn and at present time there is no better or easier test than PSA to alertt you, it is far from perfect, but it is the best we have.

I have been trying to follow up on the new marker, Prostate Health Index, PHI may help identify agressive PCa. The test was supposed to be availabe by now but I think it has been delayed, I do not know why. Couple other markers were in the news, but as usual, never materialized to the market. Very frustating.

Re: The decision for waiting with a borderline diagnosis

Akai,

I’d just like to comment on a couple of the points in your two posts.

1. You say Somebody started a thread on another website re AS, one of the valid point against AS is that Bx (ie Biopsy) is not always accurate, often time G6 turned into G8 after surgery. Whilst it is true that pathology after surgery will disclose a Gleason Score that differs from the Gleason Score of a needle biopsy, it would be very unusual for the difference in the two results to be from GS6 to GS8. In the substantial majority of cases in studies there is a change from one GS to the next – i.e. from GS6 to GS 7a (3+4). Broadly speaking, after surgery, about one third of Gleason Scores are upgraded, one third stay the same and one third are downgraded. In the most unfortunate cases no cancer is found in the prostate after surgery. If you have read any of the published AS studies you will see that about 25% of the men in the studies never have another positive biopsy in their follow-up years – this is reflected in the stories of some of the AS men in the Yana site. Of course, because there is no certainty in the prostate cancer business, and the methods we use in biopsy procedures (despite there being better ones) there will always be doubt as to the accuracy of the biopsy results.


2. You say ….. there is no better or easier test than PSA to alert you, it is far from perfect, but it is the best we have….. The PSA test is the only test we use, so it must by definition be the best. However if you look at the studies that examine PSA tests critically, there is more damage caused by the reactions to PSA testing than the benefits that might be achieved. I do not intend this statement to be the start of a “PSA War” so please nobody start one.

3. You ask why the Prostate Health Index (PHI) has not been marketed yet. I think it may be because it is not a very good test. It was approved by the FDA in June 2012 – see FDA approves Beckman Coulter’s “Prostate Health Index” test for informed commentary. And see also a BRIEF EXPLANATION of the test from which you will see that it depends on evaluating a variant of PSA and will therefore have similar issues to PSA tests. It is hardly a new test from that point of view.

Hope this helps,

All the best
Terry in Australia

Re: The decision for waiting with a borderline diagnosis

I did not realise you were a Kiwi, Kevin. We suggest people put their country of residence when mailng because it is then possible to suggest more specific links to suitable sites. I had assumed you were in the US.

You might like to read the experience of Geoff Tisch . You may feel that some of his dietary ideas go further than you would want to go, but he does seem to have a good handle on AS support kin New Zealand and should be able to help you.

Another NZ resident who may help is Eric Gamble Of course his diagnosis is very different from yours - and that guided hs treatment choic, BUT....he has been around the NZ prostate cancer world for many years - he was diagnosed in 1994 - and may well be able to offer you soe ideas. He is a really nice bloke too.

I've just posted a response to Bob Parson's not about Dr Strum's latest book. Even if you don't use Kindle, have a look at the free sample of the book on Amazon, especially the chapter I mention which sets out a blueprint as to the best way to choose and interact with a doctor.

Good luck.
Terry Herbert

Re: The decision for waiting with a borderline diagnosis

I noted your request for forum members to put country in their sig, but since health is universal I didn't see any advantage in defining my location at the beginning. If there's a proven development anywhere in the world I'm perfectly happy to travel and follow it.

I had read the two bio's you mention, and thanks for bringing it to my attention again. Since I'm not from either city (my city is not mentioned anywhere on this site), I'm still a lonely voice in my location! I'll certainly consider contacting them.

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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