There is life after YANA … and Terry … you deserve it!


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 became 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 respectfully, 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

15 Responses

  1. Terry,

    Since you and I spoke about this recently it comes without surprise that you are set and ready to pull back. But I know you as a man who lives life to the fullest and this is good news that is hard to swallow. Your contribution to the world of prostate cancer is absolutely a thing of beauty. Bless you my friend and most importantly thank you. I learned a lot from you as a friend and leader of Yana.

    Now I know you still were planning another visit to the States, and wouldn’t you know it I was planning another dinner … LOL. And it would be great if you and Anthea were sitting across the table again …

    We all love you Terry. Thank you kind sir …

  2. Terry,

    You have been a valuable contributor to the prostate cancer cause for many years. Congratulations for your successful contributions to the prostate cancer world, and I wish you many more years in good health. Enjoy, but try to make it longer than 20!

    Ralph V

  3. Hear, hear.

    Terry has saved more quality-of-life than he will ever know, not just through his well-expressed opinions but by providing a place where men learned from the experiences of others and joined a community.

    Good on you, Mike, for providing him this shout-out.

  4. Terry:

    I must say that, while we sometimes had our differences, you probably handled your end better than I handled mine.

    Nevertheless and notwithstanding, I admire you for the fortitude you have shown dealing with your own situation as well as aiding uncountable other brothers.

    Yes, brothers. For that’s what we are: brothers in arms against a merciless enemy.

    Steve J

  5. I’ve had many personal exchanges with Terry in discussing various prostate cancer issues. His Yananow site was [and still is, Ed.] loaded with helpful information for all prostate cancer patients as well as caregivers. I liked when Terry called, as the saying goes, a spade a spade. I know we will continue to hear from Terry. I expect it is just the work that is involved in keeping up the experiences section that has become a bit much when he is working at managing his cancer and needing more time to do the things he wants and take the trips he and his wife are looking forward to. Keep in touch Terry. We will continue to need your wisdom.

  6. And please don’t forget Terry’s information guide — “A Strange Place”. Our support group in the UK still prints and distributes this to newly diagnosed men.

  7. Terry

    It is a great site. I got a lot out of reading about others’ experiences, and it helped clear my head to write down mine. Seems a pity to lose it. Did you think about giving it to someone else to manage and look after?

    Richard

  8. Richard:

    I know that Terry asked many people and organizations if they would be willing to take over the YANA site (Prostate Cancer International included). However, I don’t think most readers and users appreciated just how much time and effort goes into maintaining sites like YANA (and this one). It is a labor of love and it requires a major commitment. As I told Terry, if I could have taken over YANA, I would have done so, but then I would have had to give up this one.

  9. Sitemaster

    I used to run a small software development company and have been looking for a prostate-cancer-related project to get involved with. I wonder if he would consider letting me have a go at taking it over? What is the best way to contact Terry?

    Richard

  10. Richard:

    I have forwarded your inquiry to Terry together with your e-mail address. I am sure he will get back to you.

  11. Richard:

    Apparently the e-mail address you left with your message above is not active. If you want to contact Terry directly you can use the direct e-mail address on the home page of the YANA site.

  12. Yes, sorry, it was spelt wrong. The address is now correct, but I will contact Terry at the email address above. Thanks

    Richard

  13. I’d like to just clear up a few things about the Yana site but before doing that I’d also like to thank all you folk who had such kind things to say about me both here and in personal mails. I’m not sure that I deserve all the accolades, but perceptions are reality and at least I have, through your mails, achieved one of my of-stated aims — that people should say nice things about me before I go up the chimney rather than afterwards? :-)

    Here we go:

    1. The Yana Experiences will not disappear. They will stay exactly as they are now for the moment, but no new stories will be added: no updates will be posted. As time goes by I will probably start weeding out stories that may have no real long-term value, but I will certainly be leaving the monuments to those members who have passed on and also some of the equally monumental stories from men who had powerful stories to tell.

    2. Although the myProstate site may come up in German at times, this can be corrected by clicking on the English language button. (This also translates any of the other language entries.) Franz and I have been busy dealing with the English translations of the Instructions. Those that will help with registration and loading of the personal stories are already on the site — and can be downloaded as a fairly large (3 MB) PDF file either from the myProstate site or from this link on Yana. Reading this will give you a good idea of the scope of the site and how useful if will be for all of us once there are enough stories loaded. The instructions for searching und viewing reports will loaded in English within the next few days and will demonstrate just how you can focus on finding stories that match your criteria. This really is a Mercedes Benz of a site, compared to the old farm utility Yana site. Nothing wrong with a farm utility vehicle, but …

    3. The Yana site will not be closed down. As and when I have the time I will be going over what can be compared to the remodelling and refurbishing of a somewhat rambling house that needs a bit of work on it. If traffic to the site drops of to a level where it seems not to be serving any useful purpose I will close it.

    4. I intend to expand my booklet – “A Strange Place” – some and possibly incorporate my own personal experiences, so it would be a two-part book, using the funds that have been donated over time as the “seed money” since I doubt that any publisher would be too keen on the project.

    5. I will probably land up back on the internet forums, but intend taking time off from these too.

  14. Terry,

    Since joining the prostate cancer community nearly 4 years ago, your name and knowledge has always been a staple for me. You have dedicated your life to helping others — more than you know. Now it is time for you to focus on your life and your family. Do visit occasionally. But take this next season of time to enjoy life outside of this community. We will all be looking for your occasional comments and by all means keep us updated as to your upcoming adventures in life. Thank you for giving so selflessly all these years! Blessings!!

  15. I am sorry to report that Terry’s health has deteriorated due to advanced complications from his prostate cancer. He has been moved to hospice care, and he does not have much time remaining.

    I have been working with Terry for several years to fully automate the processing of all of the survivor stories on the YANA site, which has allowed us to keep the site running. As a result of Terry’s declining health, he has entrusted the YANA site to me, and I plan to keep it running as long as I can.

    However, there are some costs associated with keeping a high-volume web site like YANA running without interruption. Although we have never requested funding from outside sources, we will accept donations. If you wish to help, please go to: http://www.yananow.org/donations.shtml

    Mark Freedkin
    YANA Administrator
    Irvine, California (USA)

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