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Prostate men need enlightening, not frightening January/February 2013
The more things change.....


I am sure most of you will have heard the saying "The more things change, the more they stay the same".

The truth of that struck me last month when I tried to defend Sir Ian McKellen after the interview when he "came out" about his choice of no treatment following his prostate cancer diagnosis Charity's massive boost after Sir Ian McKellen reveals to Mirror he has prostate cancer There was an enormous negative reaction, mainly in Britain, especially on the "social networks" where he was condemned because he had sentenced so many men to a long and painful death. No matter that the number of men seeking PSA tests had rocketed after his interview was published, no matter that he had acknowledged that the disease can be deadly.

I foolishly thought that these people attacking him might be simply ignorant of all the studies done on AS (Active Surveillance) over the years which supported Sir Ian's position. But when I put that point of view the result was a hail of abuse the likes of which I have not been subjected to for ten years or more. At that time I was even labelled as encouraging geriatricide - the killing of old men. Similar things were said now and I was said to be an ignorant idiot. I realised then just how far we still have to travel before calm discussions can be held where good information is exchanged and understood. That is something I have endeavoured to do for the best part of fifteen years now, trying to fulfill the aims we set out when we started to build the YANA - You Are Not Alone site :

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..

My ability to provide suitable information was also called into doubt by a man posting on the Yana Forum regarding what he terms the "misinformation" in my posts and on the site. He had, in December 2009, posted a message on the site saying "....... 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." Regrettably he did return, despite his threat not to and started again to raise doubts about my motivation and the accuracy of my posts.

I must admit to being disheartened by these two events. I am fairly sure that they do not represent the views of many men who visit the site and the forum but ...... it has not been a very good year for me so far. We are having a very hot summer and my heart condition and medication create a difficult environment for me when it is so hot. I have been pondering whether items like this E-Letter are simply a waste of my slim resources - hence the delay in preparing this one.

Can I ask you please to do one thing - well two clicks! Go to this page E-Letter Poll click on one of the three options and hit Enter. Unless the majority of subscribers - over 200 - vote positively, I intend stopping E-Letters. This will not affect the main site which will continue to provide the information and ability to record and update the Survivors' Stories.

Dr Snuffy Myers - PSA Confusion


Some of you may be aware of the fact that the annual Genitourinary Cancers Symposium meeting was held recently. A number of papers of interest were presented and commentary on many of these can be viewed on The "New" Prostate Cancer Infolink - if you go along there and page down you will be able to see the well informed commentary on the various papers by Mike Scott who runs this very valuable site.

Ahead of that meeting, Dr Charles "Snuffy" Myers, posted one of his informative videos. He entitled this one PSA CONFUSION His intention was to try to clarify the latest thinking on the very complex subject of PSA. In particular he was commenting on the fact that, as studies associated with the new therapies for advanced prostate cancer have shown, PSA levels have no real value in tracking the success or otherwise of the disease. Unfortunately Dr Myers assumes a level of understanding that some men may not have.

Essentially, as I understand what Dr Myers is saying is that, as previous studies have shown, a tumour may be made up of cells that differ significantly from each other. The one group he typifies as "PSA negative" since they do not generate significant levels of PSA although they are more aggressive and grow more rapidly and the second as "PSA positive", since they DO generate high levels of PSA but are comparatively more indolent. The two aspects of these differences that are particularly important - how much PSA they create and how they may react to therapy. To these two Dr Myers adds a third element - stem cells, which he seems to designate as the "triggers" that cause the cancer cells to grow.

He postulates, based on mice studies at Johns Hopkins, that a particular therapy may cause either of these groups to collapse and die. Thus if the PSA positive cells are dealt with, the PSA will decline - although the more aggressive PSA negative cells may survive and continue to grow. On the other hand, wiping out the PSA negative cells might result in an increase in PSA despite the fact that the more aggressive cells have been removed.

This entire proposition clearly needs a good deal more research, but it does underline that, especially for advance disease, it is important to use other methods - scans and tests other than PSA to try to evaluate what is happening.

Genetics - cause and effect


The question of genetically related disease has been of interest for me for as long as I can remember. Certainly since an optician I got to know quite well showed me how to manage my migraine headaches. In the course of our discussions he talked about some genetic pointers towards the likelihood of migraine headaches developing - epilepsy being one of the items he identified. In response to my questions as to why I had this problem, which was not shared by my siblings, he told me about the theory that was developing then about the triggers that were required as well as the genetic propensity. Hence his advice to identify the triggers for the headaches and avoid them - not too complex, but very effective.

One of the best books I read on the subject of genetics which gave some good insight into the age-old question of cause and effect is entitled Nature via Nurture: Genes, experience and what makes us human. A point that resonated was that the breakthroughs announced towards the end of the last century had not created an entire knowledge base of genomes. On the contrary it had showed how little we know - but also pointed to some very exciting avenues to be explored.

Every now and then we see small indicators of work on this subject pointing the way to ways in which we may at some future time identify more accurately the aggressive forms of the disease and the triggers. Dr Myers refers to the stem cell triggers in his video, for example. Studies on a number of new tests have been presented at the Genitourinary Cancers Symposium mentioned above and although it may be early days for these, I think Mike Scott is right when he says, taking of genetically based tests.

"Over the next few years we are going to see the development and marketing of a plethora of new tests related to the diagnosis and prognosis of prostate cancer. Some of these tests may have high utility and value."

Although there is no good evidence that can link cause and effect of lifestyle to the development and management of prostate cancer it has always seemed clear to me that by improving our lifestyle we may well be able to avoid setting the triggers that may lead to the disease developing or progressing. I don't believe that there is a "silver bullet": I doubt that many, if any, of the supplements are necessary or do much good, if only because my personal experience of managing my migraine headaches is so different from other people's. My triggers are specific ones. Unfortunately we cannot yet identify just what our prostate cancer "triggers" might be, but we can guess at the most likely ones.

Yana update


The site is working well, thanks to all the improvements made over the past eighteen months and the efforts of Mark Freedkin and the team of volunteers who have made such a difference,

The number of visits to the site continues to grow. There were 33,414 (daily average of 1,077) in January this year compared with 22,960 visits (daily average 740) in January 2012. If YANA was a business, a growth of 37% in 'customers' would be regarded as very satisfactory.

There are almost 1,200 Survivor's Stories on the site now - 1,196 to be precise. Of these 896 have been updated within the last 12 months, which is tremendous. I'd like to thank everyone who has responded to Mark's wonderful reminder system and who have shared their latest news.

I know I've said this before, but I really cannot emphasise how important updates are. There is no doubt that the initial thought of most newly diagnosed men (and their supporters) is that there is a real possibility that they will not survive for more than a matter of months or maybe years. That is sadly true for a small number of men, but for the majority, they will live out their normal life span. Survivors who update their stories demonstrate this fact better than any studies or assurances.

Three studies.


Mark and I are always in something of a quandary as to the fairly frequent requests we receive from researchers seeking participants in studies. We reject most of them but there are three that we feel may have particular benefit for many Yana men and so details have been posted.

The first of these is detailed here - Sex after prostate cancer: confidential interviews

The other two, the first of which deals with the mental effects of ADT (Androgen Deprivation Therapy) and the second of which seeks volunteers for a short program that may help with some of these consequences are on the Yana Forum at Two ADT (Androgen Deprivation Therapy) Related Studies

I hope some of you will be able to participate.

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