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Prostate men need enlightening, not frightening June 2013

Genetics again

The 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 influences.

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.

Is e-medicine the future?

A 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

"Topol has 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

What 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.

Statistics can mislead

My 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 future.

Although the article is about evaluating risks in general, they do touch on the issue of prostate cancer in one example when they say:

For 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.
CRUK 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.

Emotion 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.

Yana update

We have only now learned that Merle Pinnecamp passed away in March this year after two years in hospice. Our condolences to his family.

Beverly 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 yananow@yananow.org You may even find some items of interest that you haven't seen before.

More on Biopsy Risks:
Cryotherapy v RP

A number of papers presented recently have dealt with the variety of dangers associated with biopsy. This is a subject that is often raised in prostate cancer forums. There was a link to one study in last month’s E-Letter - Risks associated with serial biopsies for men on active surveillance protocols. Here are two more:

Does 120-day mortality after prostate biopsy outweigh any possible benefit of screening?

Risk for infection with ciprofloxacin-resistant E. coli at prostate biopsy today

A relatively small Danish study published in April compared the failure rate of Cryotherapy and RP (Radical Prostatectomy). The conclusion was that the failure rated for the Cryotherapy was almost twice the rate of the RP.

It is difficult to know how much value to place on this study because of the size of the cohorts. Regrettably none of the large US institutions practising cryotherapy have published their data.
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