men need enlightening, not frightening ||January/February
more things change.....
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.
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 :
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
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
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.
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.
Snuffy Myers - PSA Confusion
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.
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.
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
- cause and effect
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.
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.
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.
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.
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
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
I hope some of you will be able to participate.