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In a recent post John Bonneville had yet another crack at me (as he has for years now) and the 'misinformation' I post because I have dared to tell my story as it is - and people might sheepishly follow me without a thought as to whether my personal choice is suitable for them or not.
That kind of post bothers me less than this type of pernicious article My Patient, Killed By The New York Times written by a doctor so famous that, so it is claimed he .... led the team that famously saved Mother Teresa’s life in the late 1980s - but not, alas! in 1997.
Here is my take on the article:
1. Dr Lombardi specializes in infectious diseases. He has 29 years experience, according to his entry in Top Doctors. So presumably he qualified in about 1984.
2. In 1984 the deceased would have been in his mid-forties.
3. Since the deceased was one of Dr Lombardi’s first patients, it seems reasonable to assume that the deceased was about 45 when he first consulted the doctor.
4. So the first question is did the deceased have annual check-ups over all those years?
5. The second question is did the annual check-ups prior to 2008 include DRE and PSA tests? If not why not – there was no ‘controversy’ about PSA testing in those early years. It was clearly recommended for men over 50, an age the deceased would have reached in about 1990, at the height of the PSA boom.
6. The third question concerns the DRE results in 2009, 2010, 2011. Presumably these were done as the deceased agreed to an examination in 2008. and presumably they were negative.
7. By either 2011 or 2012, the deceased had developed extensive bone metastases, presumably without any positive DRE evidence, and the disease was so aggressive he died in two years.
Is it likely that the variant of prostate cancer which the deceased was unfortunate enough to develop would have had a normal PSA and DRE in 2007, normal DRE in 2009, 2010, 2011 and yet have had a PSA that would have pointed to this? Or, given the aggressiveness of the disease would the PSA have remained ‘normal’ since the most aggressive forms of the disease are typified by ‘normal’ PSA levels.
Misinformation I think, aimed more at frightening than enlightening. But that's my foolish view, so please feel free to ignore it and come to your own conclusions.
In a recent post John Bonneville had yet another crack at me (as he has for years now) and the 'misinformation' I post because I have dared to tell my story as it is - and people might sheepishly follow me without a thought as to whether my personal choice is suitable for them or not......
All the best
Terry In Australia
Terry your PCa like mine was treatable and potentially curable. I chose treatment and have done well thus far. You chose your own pathway, contrary to medical advice, and sadly you now have advanced PCa.
We only have ever had one difference of opinion and that is in regard to AS. I am of the view that AS is appropriate for men with low risk PCa in their mid to late 70's. You of course have an alternate view and are living with the consequences of that view.
Men in their 40's, 50's , 60's and even 70's with Intermediate to High risk PCa require treatment. in most cases. To promulgate the virtues of AS, when medical opinion indicates the need for treatment, is sheer folly in my view. Dig up all the papers you like to support your position, as I sure you will LOL, and then ask yourself, given your own journey, would you recommend to another man with potentially curable PCa to follow in your footsteps? If the answer is no, which I now hope it is, then please say so, for that is the legacy you deserve.
Oh dear!! John – you really have given me a task to complete!
It is some years since I have bothered to respond to such consistent misstatements about me and this site. It will probably be pretty boring for most people and I regret the time I will be taking, especially as it will, from past experience, make absolutely no difference to John Bonneville’s views. He is not alone in trying to deal with what psychologists call Cognitive Dissonance. We all have to do this to some extent when presented with evidence contrary to our worldview. This clash is dealt with in a number of ways – from ignoring the clash completely to changing our original views so they coincide with later information. That’s how most of us learn, but some, so anxious to prove their view to be ‘right’ decline to accept that there may be another valid point of view.
So let me deal with all the relevant points that John has raised here in the hopes that it may clarify the position for anyone who was unclear before:
1. John says: …… given your own journey, would you recommend to another man with potentially curable PCa to follow in your footsteps? I’ll deal with what ‘curable’ means further down, but if this question was asked in a court of law it would be disallowed as a leading question, the classic one being “Have you stopped beating your wife – answer Yes or No.” So my answer is that I would not recommend to anyone that they “follow in my footsteps” because it is not my position to make any such recommendation to anyone at any time. I have never done so in the past and I have no intention of doing so at any time in the future.
When the group of us who set up this site came to set our aims we came up with this statement:
To provide comfort to any man diagnosed with prostate cancer, to offer thoughtful support to him and his family and to help them to decide how best to deal with the diagnosis by providing them with and guiding them to suitable information, being mindful at all times that it is the individual's ultimate choice that the path he decides to follow is his own and that of his family, based on his particular circumstances.
In aiming to fulfil that purpose, I have, and will continue to do so, in suitable cases suggested that a man consider the information about AS (Active Surveillance) and discuss this with his medical advisors. A typical response to a request for information would be similar to that which I gave Kevin last week when I said:
There is no doubt that the basic details of your diagnosis, as you have written them here, make you a potential AS man, once you have verified the data and had whatever extra tests you deem appropriate, but whatever you do is your decision and should be taken in consideration of all aspects of this complex disease where there is no certainty and a good deal of misleading information.
I don’t think even you, John, could take that as advising Kevin to ‘follow in my footsteps.’, especially as I state very clearly in the same post Of course, as I always say, that was my personal decision and I am not making any claims as to whether it was a good decision or not – but it has worked for me to date.
2. John says Men in their 40's, 50's , 60's and even 70's with Intermediate to High risk PCa require treatment in most cases. I note the words “in most cases”. Just what does that mean? Does it mean that SOME men in these categories do NOT require treatment? If they do NOT require treatment then should they consider AS? And what of men in their 40's, 50's , 60's with Low Risk PCa – do most of them require treatment? How would John discriminate between those who require treatment and those who do not? I doubt that anyone would recommend a man with a High risk diagnosis not to have treatment unless there were other health issues involved which would point to the likelihood of a death from another cause somewhat earlier than might be likely from prostate cancer.
3. John says, in a seemingly mocking LOL way Dig up all the papers you like to support your position…… as if that is a bad thing. But how else to make a decision but by looking for relevant studies published by professionals with more knowledge than I have in prestigious journals? Ignoring this data completely would not suit me in my decision making process. Without these ‘papers’ I would be left with the unconfirmed personal anecdotal information based on another person’s experience. I am not saying that other people’s experience is not important, but as the warning on the site says: The stories and charts provided are for your information only, and show a brief summary of what others have done. They should not be used for making your own treatment decision……
So, yes I do refer to published material, both on the site and when responding to individual requests. I leave the person concerned to absorb what they will from the material.
You, John, on the other hand have not responded to my requests for material that backs up your statements, so we have to rely on your views solely. I think some of them are misleading, based on published data.
4. John says : You chose your own pathway, contrary to medical advice, and sadly you now have advanced PCa. There are two points to be dealt with. In the first place he says that my personal choice was ‘contrary to medical advice’. Was it contrary to the medical advice to have an immediate surgical procedure? Or the medical advice to have radiation therapy? Or the medical advice to have brachytherapy? Or the agreement that my choice was acceptable to my medical advisors? I have done nothing without medical advice and discussion, but as anyone who has spent any time in this Strange Place of ours knows, any decision made by anyone might well be “contrary to medical advice” because there is almost no agreement about what is ‘best’
The second point concerns the statement that I now have ‘advanced PCa’. I have a definition of that term in my files which seems to be a reasonable one:
“Advanced” prostate cancer is defined as disease that had widely metastasized beyond the prostate, the surrounding tissue, and the pelvic lymph nodes, and is considered incurable by most clinicians and patients. The average patient has symptomatic stage D-2 disease and the most common symptom is bone pain that causes physicians to seek therapy for this form of the disease.
My present state does not meet this description – as John should be aware, since he says he has read my story, my last bone scan was clear – there is no evidence of metastasis: I have no symptoms and no pain. Perhaps he has his own definition of the term which would fit my position and justify his statement.
John says: …. your PCa like mine was treatable and potentially curable. I chose treatment and have done well thus far. There is no argument about the word ‘treatable’ – all prostate cancer diagnoses are treatable, even cases of advanced prostate cancer where treatment can extent life. But ‘potentially curable’? Just what does that mean? Many years ago Dr Willet Whitmore, an eminent urologist, posed these questions, sometimes referred to as the Whitmore paradox,
"Is cure possible? Is cure necessary? Is cure possible only when it is not necessary?"
5. John says: I chose treatment and have done well thus far. You chose your own pathway, contrary to medical advice, and sadly you now have advanced PCa. I deal with the question of my ‘advanced PCa’ above. It is good that John has done well “thus far” but it may germane to point out that his diagnosis was in 2006: mine was ten years earlier in 1996. It would, perhaps be more fair to compare our relevant positions at the same time. So where was I in 2002, six years after diagnosis? Here is my update in November 2002, published on the Yana site There is not much to say in this update. I had my annual checkup in September. My total PSA came in at 5.88 ng/ml almost the same as it was last year and my free PSA was 38%, down a little from last year, but still in the high range. So, I'll carry on doing what I'm doing - seems to be working so far. . That sounds as if I was doing well at six years, just like John.
6. In another, related, post John quotes me as saying towards the end of the last century 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.
And he goes on to say, rather rudely, I thought, 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?
The answer is Yes, I do hold the same views which are not regarded as absurd by well known doctors like Dr Snuffy Myers who has long advocated a life style regimen to slow down or prevent cancer growth and Dr Stephen Strum who has said
It is conceivable that we can alter the tumor cell population so that prostate cancer is turned into an indolent disease that men can outlive. This indeed may be what happens when we believe we have cured a malignancy-- we simply have established a balance or homeostasis between the host and the cancer— essentially peaceful co-existence.
It is an established fact that all tumours, including prostate cancer, can and do spontaneously regress. There was quite a long discussion on the Forum in December 2009 Might Negative Second Biopsy Procedures Indicate Spontaneous Regression? and even John had to admit this as a possibility when he said:
….. the notion of spontaneous regression for most types of cancer is not new. Essentially from early childhood the body does produce rogue cells, but the body'd (sic) immune system is very adept at identifying and destroying these. Even in advanced cases of Ca the immune system still functions to a certain degree, but it's efficacy is variable.
Given that the immune system can recognise and destroy cancer cells, my ideas do not seem absurd. The fact that it did not work one hundred percent for me is really neither here nor there. Maybe my regimen slowed down the progression of the disease, maybe it didn’t. But since I have never suggested to anyone that they should follow my path, what I have written is just another bit of data for others to accept or reject.
7. John says Were it not for ADT your journey would have already ended. I started on intermittent ADT (Androgen Deprivation Therapy) in August 2007 – that’s a little over four years ago. Can John be serious in this assertion? I know of no study where any man with my diagnosis would die in such a short time without ADT. Of course it is not unusual for me to be told that I’ll be dead in 3 – 5 years. Doctors have been telling me that since 1996 and of course one of these days they, and John, will be correct. Whether my death will be from prostate cancer is, of course, another issue
The point of all this is that there is no “Golden Bullet”. It may well be that John’s choice will result in his living longer than I will live. It may be that I have a greater chance of dying from prostate cancer than he does, but the broad data doesn’t show that clearly. Even in one of his posts he says that 10% of the men treated in the centre where he was treated have failed treatment.
Because of the very favorable prognosis of low-risk prostate cancer, strong consideration should be given to modifying the anxiety-provoking term “cancer” for this condition. Treatment of low-risk prostate cancer patients with radical prostatectomy or radiation therapy leads to side effects such as impotence and incontinence in a substantial number. Active surveillance has emerged as a viable option that should be offered to patients with low-risk prostate cancer. More than 100,000 men a year diagnosed with prostate cancer in the United States are candidates for this approach.
Reckon I’m about done. But just in case there is any doubt in anyone’s mind. I am NOT, NOT, NOT, recommending, suggesting, advising or in any way trying to influence anyone to ‘following my path’. I am merely providing information – I am a messenger and there is that old saying “Don’t Shoot The Messenger.”
Hopefully this long thread is now done and I can get on with other things more interesting.
So the jousting, in the spirit of Valentine's Day, has stopped, with the readers being the winners.
The current exchange presented the rest of us much critical food for thought, much like the thread back in 2009. I foolishly did not bookmark the link to that thread. Could you re-post it?
Not sure which thread you are after, Jack, because there were two that I mentioned in my exchanges with John.
1. The first one was a thread in December 2009 titled Neo-Adjuvant PSA drop when John left this Forum (apparently forever) expressing his dissatisfaction at the way the Forum was run, and specifically the way I "spread misinformation" 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.
2.The second concerned the established fact that all tumours, including prostate cancer, can and do spontaneously regress. The discussion was in December 2009 Might Negative Second Biopsy Procedures Indicate Spontaneous Regression? and even John had to admit this as a possibility when he said:
….. the notion of spontaneous regression for most types of cancer is not new. Essentially from early childhood the body does produce rogue cells, but the body'd (sic) immune system is very adept at identifying and destroying these. Even in advanced cases of Ca the immune system still functions to a certain degree, but it's efficacy is variable.
Hope this is what you are looking for. You can always find the discussions (and others involving John or any of the other contributors) by simply clicking on their name where it is underlined in the Forum. That will list all posts made by that person and you can click on any of them to access their wise words.
I really am surprised that it is still necessary to have to 'defend' the way that this Forum and the site is run and the information on that is on it. Mark and I get so many mails thanking us for both - why do some people find them useful and others denigrate them so much? It's a bit beyond me at times. I suppose life would be somewhat boring if we agreed all the time - although it would surely help the newly diagnosed if the medicos could agree some of the time!!
>>>>You can always find the discussions (and others involving John or any of the other contributors) by simply clicking on their name where it is underlined in the Forum. That will list all posts made by that person and you can click on any of them to access their wise words.<<<<
I had forgotten that great feature, one of many on this forum. The spellcheck is welcome. I get a kick out the fact that the following, as with all spellchecks, would get by, even though "it's" is misused: The dog turned it's head.
Just a case of minor grammatical misinformation. :-)
>>>>You can always find the discussions (and others involving John or any of the other contributors) by simply clicking on their name where it is underlined in the Forum. That will list all posts made by that person and you can click on any of them to access their wise words.<<<<
I had forgotten that great feature, one of many on this forum. The spellcheck is welcome. I get a kick out the fact that the following, as with all spellchecks, would get by, even though "it's" is misused: The dog turned it's head.
I am being treated by the prostate-specialist team at Guys and St Thomas's hospital in London. This is one of the places that's involved with the latest developments in this field. I'm 49, and I was diagnosed a couple of years ago. Because of what was found from biopses and other investigative work the team felt that Active Surveillance (AS) was a perfectly sensible option to discuss. I'm tested regularly (which is what 'active surveillance' implies), and if/when the situation changes we'll revisit the options and make a decision then.
Point to note: current expert thinking, by leaders in the field, is that physical intervention is NOT automatically a must in anyone with this disease who's not at retirement age.
This doesn't mean that AS is right for every incidence of prostate cancer. But it DOES mean that AS is not automatically WRONG just because someone's the sunny side of 70.
It's something that should be discussed with medical experts who've reviewed your details, and remember that this cancer is typically less lethargic in younger sufferers than older guys; if you're diagnosed after 70 the odds are high that you'll die of something else.
Me, I'm under 50. But world-class experts in this field have said they're very happy to suggest AS to me as a sensible option among other choices, and they were very happy to support me in choosing AS. All the intervention methods carry various forms and levels of risk, many of which can be significantly life-altering. If they're needed, they're needed. But I was told that there has been as much as 50% over-treatment of this disease. I'll keep watching and cross that bridge when it seems more necessary.
