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men need enlightening, not frightening ||June
news broke last month that Angelina Jolie had undergone a double mastectomy because
as a carrier of the PRCA gene and her family history, she believed that this would
reduce the chances of her being diagnosed with breast cancer. The fact that at
least one man had gone a similar route and had a prostatectomy because he was
found to have the BRCA2 gene did not make quite the same headlines. You can read
about his choice here British Man Has BRCA2 Gene, Removes Prostate.
The statement that he is the first man to have this pre-emptive surgery is not
correct. It is not possible to judge if he was wise to make this decision. We
still have a long way to go in trying to understand th e complexities of genetic
PCF - Prostate Cancer Foundation recently published a booklet
which helps in the understanding of the genetic issues and their influence on
prostate cancer. There are two places to access the booklet which is in pdf format
and is a large 4 MB file. The first is at the PCF site A Layman's Guide to Prostate Cancer Genes.
The second is on the YANA site A
Layman's Guide to Prostate Cancer Genes. Since the document is presented
in a Landscape format rather than the more usual Portrait format, you may have
to adjust your View or use a different Viewer to see the document fully and easily.
e-medicine the future?
friend of mine sent me this link to a video by Dr Topol dealing with what he sees
as the future path for medicine - Dr. Eric Topol on NBC's Rock Center Whether
his predictions will turn out to be correct or not remains to be seen (and applying
my "three questions" approach raises some cynicism.) After all he is
talking about devices that he has a personal interest in developing - see this
extract from his Wikipedia entry
been involved with wireless medicine since its inception. He was the first physician
to serve on CardioNet's Medical Advisory Board in 1999, the first dedicated wireless
medicine company that performs real-time ECG remote, continuous rhythm monitoring.
In 2007 he joined the Board of Sotera Wireless that has developed the first continuous
non-invasive blood pressure monitoring device, which also captures all vital signs.
......in 2009, he served as Co-Founder with Gary and Mary West to form the
West Wireless Health Institute that is dedicated to advancing health care and
reducing costs through innovative wireless solutions. ....... He led the first
trial with the GE Vscan device GE Reports, a pocket high resolution, mobile ultrasound
imaging device, introduced in the US in 2010 "The Doctor Will "e" You
Now" and is currently leading clinical trials of heart rhythm and heart failure
monitoring wireless devices".
I do not recall hearing anything
about Dr Topol before this but found that he was deeply involved with the issues
surrounding Vioxx and its subsequent withdrawal from the market. Among the number
of sites revealed by a Google search in this connection is this one, which seems
to give a reasonable report of the background - Ties to Industry Cloud a Clinic's Mission
appeals to me about what Dr Topol says in this video is that IF what he
terms e-medicine does develop the way he predicts, the focus will change from
what he terms the medically imprecise shotgun approach of screening and medicating
too many people unnecessarily to the targeted requirements of an individual. As
he says, we are all different and our medical requirements are too. "One
size fits all" is not the best approach for us as individuals.
personal experiences from discussions and observation is that many men are as
statistically inept as I was when I was diagnosed. Although I am no statistician,
I have learned a good deal over the past fifteen years and have some understanding
as to what aspects of data is important for me and what data may be presented
in a way that may influence my thinking. And may not necessarily point me in the
right direction. As I have said on many occasions I found the piece by Stephen
Jay Gould The Median
Isn't The Message very helpful as a starter piece in helping me to develop
a better understanding.
Another good piece by Michael Blastland and David
Spiegelhalter was published in The Observer, Sunday 9 June 2013 and you can read
it here:Everyday risks: when statistics can't predict the
Although the article is about evaluating risks in general,
they do touch on the issue of prostate cancer in one example when they say:
example, one of the writers of this article has around a 50/50 chance of having
prostate cancer at the moment and the other will have too, very shortly, since
it is estimated from post-mortem data (from deaths in unrelated accidents) that
about half of all men in their 50s have histological evidence of cancer in the
prostate, which rises to 80% by age 80, according to Cancer Research UK.
then goes on to point out that "only one in 26 men (3.8%) will die from this disease".
So, if 50% of men in their 50s discovered they had prostate cancer (13 out of
the 26) but only one in 26 was to die from it, what do they all do, when no one
knows if they are one of the 12 who will on average be OK or the one who won't?
Finding out what you've got doesn't answer the doubt about whether there's anything
to worry about, and so raises new doubts about what to do.
often overtakes logic in all our decisions and it may be difficult to stifle emotion
in the decision making process. We can never be truly certain about any aspects
of prostate cancer, but there is no doubt that the importance of following the
advice to Assess Status Before Determining Strategy can rein in the emotions and
replace them with data that may make for a better decision at any stage of our
individual cancer journeys.
have only now learned that Merle Pinnecamp passed away in March
this year after two years in hospice. Our condolences to his family.
mailed us with the sad news that Charlie Redd had passed away after
a long hard fight, having been diagnosed in 2000. He certainly gave it everything
he could, but sometimes we just can't.
We said in our last E-Letter that
we intended to move to a new service provider because of the unacceptable service
levels we were experiencing. Mark found a hosting service offering better reliability
with excellent technical support. We moved quickly and efficiently to the new
server earlier this week without any noticeable interruptions. There was a considerable
amount of work to do and once again I must say how grateful I am that Mark volunteered
to help run the site.
Based on our testing, it seems that all aspects of
the site are fully functional on the new server. It would help if you could each
spare half an hour or so to test this by moving around the site using the links.
If you find any problems please mail us at firstname.lastname@example.org You may even find
some items of interest that you haven't seen before.
on Biopsy Risks:
Cryotherapy v RP