There is life after YANA ? and Terry ? you deserve it! ? THE "NEW ...

Terry Herbert ? the founder and organizer of the YANA web site ? has announced that he will be closing down the Experiences section of YANA at some time in the near future. After coordinating the YANA site for most of the past 15 years, Terry has (appropriately) decided it is time for him to spend a little more time enjoying life.

I have never actually met Terry ? but we have been communicating with each other regularly for much of that 15 years, since we were two of the earliest adopters of Web technology to share information about prostate cancer for patients and their caregivers.

Terry?s most important contributions to patient knowledge about prostate cancer have been twofold:

• The development of the ?personal patient experience? archive on the YANA web site, which allowed hundreds of patients from all around the world to archive and update their personal prostate cancer histories over time, and an informational resource for others considering similar management/treatment strategies

• His continuous advocacy of watchful waiting and active surveillance as effective long-term prostate cancer management strategies (for appropriate patients who fully appreciated what they were getting into)

Like others who were willing and opinionated advocates for watchful waiting and active surveillance in the mid- to late 1990s, Terry has received his share of derision and abuse over the years for raising key questions for which others (then and now) have had few good answers. As someone who ?practices what he preaches,? Terry could be fervent in his opinions (just like those who believe strongly in the? benefits of other specific management strategies ? from cryotherapy to protons). However, over the nearly 15 years I have known Terry, I have always found him willing to listen to new ideas, to treat concepts and people he disagreed with respect, to be committed to opinions based on documentable evidence, and to be someone willing to help every prostate cancer patient he could. Terry?s self-characterization as ?somewhat contrarian? (see below) would be a fair assessment of his approach to prostate cancer in particular and life in general.

The following is Terry?s ?pre-retirement? e-mail, reproduced from the Prostate Problems Mailing List, where it appeared earlier today:

When I was initially diagnosed in 1996 I was told that I could expect to live 3 ? 5 years if I did not have immediate invasive therapy. I did not accept that advice. Once I had learned a little, I challenged this prediction but was told that since I was a ?young man? of 54 with a life expectancy in excess of ten years, I should have the therapy soon or I would surely die before I was 70 ? in a little over fifteen years from the date of my diagnosis. Again I was not convinced by these statements since there was no solid evidence to back up the predictions. Since I am somewhat contrarian I made it my aim to live for at least twenty years, if only to demonstrate that I was not wrong.

The fifteen year mark which I was told was my predicted maximum life expectation is coming up on August 12 followed within a few months by my Biblical ?use by? date of three score years and ten. This has caused me to pause and re-examine my life; to consider what I have achieved and what I want to do IF I do have only the five years of my original target left. I realise that I have been spending more time than I had originally intended on prostate cancer related work. So that has to be cut back. As an initial step, I am sorry to have to tell you that I will shortly be closing the Experiences section of YANA.

Fortunately a similar, but much improved version of the YANA Experiences site has been developed in Switzerland and I would urge everyone who has contributed their experiences to the YANA site to move their story there. It has become very clear to me over the last fifteen years that personal accounts of our journeys are very important indeed to those who follow behind us. My story is there already.

The Swiss site is called myProstate and is at http://www.myprostate.eu/ All information on the site is available in four languages at present and there are many excellent features such as summaries of side effects of various therapies and drugs, graphs that plot PSA (and other) results, and many others. Updating your story will be much more simple in the future than it is now because contributors can enter data and details of their journey directly. ?

All that is needed initially is to use a valid e-mail address to set up a password, fill in the chosen name, country, date of birth (to calculate present age and age at diagnosis) and language choice. This will establish a blog and details of individual stories can then be entered. The simplest way to do that, for anyone who has contributed to Yana is to copy the current Yana entry into a word processing document such as Word.doc, edit it if necessary and then copy and paste onto the myProstate site. Perhaps ten minutes work but invaluable to others. Good luck to each of you on your journey and my thanks to those of you who participated on Yana.

I am particularly pleased to hear that Terry has been able to identify a potential new ?home? (at the relatively new myProstate site) for all of the personal experience material that has been accumulated on Yananow over the years. I looked at that site a few days ago. It quite certainly offers all of the potential originally enshrined in the Experiences section of the YANA, along with a bunch of other added benefits, and I hope that many of the original users of the YANA site will transfer their material as Terry suggests. I also hope that Terry will be able to find a way to transfer at least some of the other historic experiences of patients who are no longer in a position to do this themselves. I cannot believe that those patients would want anything less than their contributions to continue to survive them.

Terry, we all know that you won?t just ?disappear? from the prostate cancer community in a puff of smoke, but this seems like an appropriate time to thank you, very sincerely, for all the hard work you have put in over the past 15 years ? and we hope you will far exceed the 20-year goal you set for yourself at the time of your original diagnosis (even if some intermittent hormone therapy is an essential element of that continuing survival).

Mike

E. Michael D. Scott

Co-Founder
The ?New? Prostate Cancer InfoLink
and
Prostate Cancer International

Filed under: Living with Prostate Cancer Tagged: | advocacy, Herbert, YANA, Yananow

Source: http://prostatecancerinfolink.net/2011/07/28/there-is-life-after-yana-and-terry-you-deserve-it/

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