I regret having to report the demise of Terry Herbert, the founder of Yananow.org and one of the earliest among us to start using the Web for the broad dissemination of patient-directed information about the diagnosis and management of prostate cancer. Terry died of his prostate cancer in hospice care in Australia earlier today.
Terry and I had communicated regularly about prostate cancer for nearly all of the 18 years of his life after his initial diagnosis. We didn’t always agree about everything, but we agreed about a very great deal — most centrally, the importance of individual patients needing to learn about, understand, and take charge of their own specific form of prostate cancer and appropriate forms of care. Terry was someone to whom this came naturally — and through Yananow.org he built one of the earliest systems to help others share their experiences with the world.
Terry was also a polarizing figure because he decided — very soon after his diagnosis, and at age 54 — that aggressive, early intervention wasn’t for him. He therefore practiced various forms of careful monitoring of his PSA and other indicators, and avoided invasive therapy for the vast majority of the following 18 years of his life. As a consequence, he received a great deal of “flack” from many members of the prostate cancer survivor community over the years. And I am sure that now he has passed, there will be those who start to state that his death from metastatic disease “proves” that he made a bad decision.
So I shall state here and now that I am as sure as I can be that if Terry had to make the same decision all over again (bearing in mind that he was diagnosed in South Africa in August 1996, long before the availability of many of the tests and treatments that are available now), he would tell you he would still have made the same decision. His choices at diagnosis were very limited: surgery by surgeons with very limited experience in the management of prostate cancer at that time and radiation therapy with radiotherapy equipment that probably didn’t even include 3D conformal radiation planning (let alone the highly sophisticated targeting systems available today). There was no HIFU; there were no CyberKnives; there was no proton beam radiation therapy except at Loma Linda.
For Terry, everything was about the quality not just of life but of living. And for at least 17 of the ensuing 18 years, I know that Terry did enjoy living, making multiple trips far from his home in Australia to Europe, America and elsewhere, while continuously preaching that living without aggressive, invasive treatment was a perfectly reasonable decision for those patients who had a full appreciation of the risks that they were taking — which Terry most certainly did.
Terry was just 54 years old when he was diagnosed in August 1996. His initial PSA was 7.20 ng/ml, his Gleason score was 7a (i.e., 3 + 4 = 7), and his clinical stage was T2b. Few men today would probably make the decision Terry made back in 1996, but at that time it may not have been a bad decision at all, given the side effects associated with surgery and radiation therapy at that time and the fact that brachytherapy was in its infancy. If you are interested in reading Terry’s personal prostate cancer story, you will find it here on the Yananow web site.
Rest in peace Terry … You taught a great deal to many, many men and their families … even when they didn’t necessarily agree with you. And I always considered you to be my friend, even though we never actually met in person.
Terry made considerable efforts to ensure that the Yananow web site would continue and grow after his demise. If you want to make a donation towards that cause in his memory, you can just click here.
Mike Scott
Filed under: Uncategorized | Tagged: Herbert, Terry |
THE "NEW" PROSTATE CANCER INFOLINK 
RIP. I learned a lot from his website.
As a participating YANANOW member, I was aware of this as well. First site I found after diagnosis. Inspirational man and site for sure. He is partly responsible for me being on AS right now, that is for sure.
He definitely “made a difference”!
I miss him already. I am very saddened as Terry was a friend and colleague in the advocacy fight against prostate cancer. I am one among just a few in the US that got to meet him and Anthea. What a special couple. What a terrific human being.
After I was diagnosed with prostate cancer, YANAnow was the first place I found solace in the fact that I was not alone, that there were many more stories from others who had experienced the same situation that I was dealing with.
YANAnow has always been a clearing house of stories, information, forums, and collaboration in the fight against prostate cancer. In my opinion, the gift that Terry Herbert has given to men all over the world is without peer.
There should be Herbert/Emerson award for courage in standing up publicly against prostate cancer. For going well beyond themselves to help us all.
Arguably, PCRI would tell you that that is what the annual Harry Pinchot awards are meant to be.
I have no problem with that. But PCRI is one segment of Advocacy. There are others. Still both Harry’s and Terry’s contributions were tremendous. Finding a way to honor Terry and David Emerson is something that needs to be looked into. Perhaps the Prostate Cancer Advocates Forum and the InfoLink can work together on. Not a race, not a competition, just recognition to the many men that contribute to what Harry and the others have done. There are indeed many more advocates working their butts off that have no recognition for it. If they are not working directly with PCRI, I am afraid that a Pinchot award is not likely for them. That would be a miss.
Terry was one of my heroes. He somehow found the time to correspond with me over the years, tolerating my 20-paragraph e-mails and responding in kind. We shared much, corrected each other a bit, and argued just a little, in exactly the proportions we both enjoyed.
It would be conventional to say that the world is dimmer through the loss of his shining light, but untrue in this case: the many lights he lit will continue to kindle others.
Reiterate Terry’s immeasurable impact on using the internet to further prostate cancer education and support — I spoke and dialoged with him several times.
May his memory be a blessing.
I am saddened to hear of Terry’s demise. Like so many others, I respect his personal decisions and learned a lot from his website. I happen to think an 18-year run is darn good! Rest in peace, Terry.
Terry was a giant in our war against prostate cancer. He will be so missed.
Sorry to read this. His site has been and will continue to be an inspiration to others … beyond what he ever knew. … This site, Healing Well, and his site were the three sites that kept me sane in those early weeks of being diagnosed. … Thank you for that … and thank you for all you did.
I never knew Terry personally but I enjoyed his belief in the need for the occassional dose of humor to keep everything in balance for those living with PCa — see his TROOPC site for a good laugh. May he rest in peace.
Came to know Terry after my diagnosis when I was desperate for information and peace of mind. Yananow sent me much needed information and (like many of the rest of you ) Terry responded to my e-mails and posts like I was the only person he had time for. His compassion, wit and determination are a few of the “extras” I learned early on. They helped provide me with much needed and beneficial “peace of mind” that I sought. Not only did he lead with action and courage, but more importantly he lead by action.
Sometimes people help us and they never know it. Something they shared with someone else, or something they wrote that we read. Knowing Terry made me realize that too often we don’t reach out and say “Thank you.” Or that we need to make the time to acknowledge someone for what they have said or done. An old saying about how you might just be one of millions of people in the world, but to one person — because of something you said or did — you might be their whole world.
Thank you Terry
kapm
I became aware of Terry and his website and posts shortly after my own diagnosis (at Gleason 9) in 2004 and I have followed since then. His story gave me added courage during my own battle: external radiation plus hormonal therapy.
I am sure his memory will inspire others who may be forced to join this strange fraternity.
Rest well, good friend! Your life was not in vain.
My sincere wishes go out to his family and many friends.
Manny Rosenbaum
When my late husband Ken was diagnosed in 1998 he got in touch with Terry when we started a support group here in the North East of England. He very kindly gave us permission to get his book “A Strange Place” printed for our members and also the updated copy a few years ago.
My husband lived 10 years after his diagnosis but sadly died in 2008 from non-Hodgkins lymphoma, unrelated to his prostate cancer. I am sure that over the years Terry helped a lot of couples through his knowledge. Sympathy to all his family.
Tina Rowley
Terry was an avid dog lover. Watching his granddaughters pictures today of them walking his dogs put a sweet tear in my eyes. I know Terry would be overjoyed to have seen it. I’ll make sure that Matt and Anthea hear about these great comments.
Thank you for this tribute to Terry Herbert who thru his personal efforts and his Yananow site has been so helpful to people with prostate cancer.
There is also a lot to be learned from studying his medical history, that might be a wake up call for others facing the same issues today.
Yes, he opted for active surveillance and not primary treatment to start off after being diagnosed with Gleason 3 + 4 stage IIb prostate cancer (the cancer was in more than half of one lobe but not on both sides) and lived for 18 years, but one might argue it was not totally clear sailing, especially after 10 years. By year 12, he was diagnosed with a bone metastasis and later had bilateral urinary obstruction due to the tumor mets and was on ADT and had radiation. His Gleason score was later upgraded substantially. He had a TURP for BPH in 2004 and heart problems requiring anticoagulation.
It was good to hear he was able to live his life to the fullest and had many wonderful travels and made many friends. We will all miss him.
Some of the things I would take away from his clinical case would be as follows:
(1) Gleason 4 disease is a bad actor. That in itself today would not be considered ideal for active surveillance, and would force one today to seriously consider primary treatment to start with. Further workup with mpMRI, repeat biopsies, genetic tests on the biopsy specimen like Polaris, etc., available today might also be done pre-treatment.
(2) Once prostate cancer leaves the prostate, there is no cure. In the meantime, the grade of the prostate cancer can become more aggressive and can spread to raise havoc in one’s body, like it did in Terry’s case.
That is why it is important to diagnose prostate cancer early, determine if it is a threat to one’s life by examining its characteristics carefully and treat it then with the goal of curing the person.
If it were me, I would like to know if there is evidence of spread outside the prostate if I were diagnosed with prostate cancer before I committed to primary treatment. My preference would also be to have RP, most likely RARP, if primary treatment were needed, as I like the idea of totally removing the prostate to rid it of possible multi-centric prostate cancer that, if left untreated, could lead to treatment failure later.
One of the things that would trouble me about having a RP (or radiation) as primary treatment is the risk of chronic bladder, bowel, and sexual side effects and being left with positive surgical margins to deal with post-op. As one RARP urologist has said, we need to transform this procedure into one done with a “neurosurgeon’s approach”. Yes, we do.
Terry Herbert and Yananow have contributed many very helpful things, including being able to search the clinical histories of contributors for important details, such as who was a person’s RP surgeon and how satisfied they were with the result. This was a real eye opener and might provide information that one might otherwise have trouble finding that could help with the decision making process.
Terry, thank you again. Hopefully, you are resting in peace now.
Boss (@Sitemaster), do we know how Terry was originally diagnosed? It seems unlikely that he had himself screened.
Dear UnreasonableMan:
Terry’s full history is archived on the Yananow web site. I have always assumed that he got his first PSA test because his primary care doctor in South Africa (whoever that was in late 1995 or early 1996) had simply started giving screening PSA tests to his male patients of 55 or more in the mid 1990s, but it is also possible that there was a medical reason for Terry’s PSA test. For some reason I never asked Terry what had initiated his original PSA test when I first “met him” on line 20 years ago … or if I did I have long forgotten the answer to the question. It is perfectly possible that that original PSA test was given without Terry even being aware that a blood sample was going to be tested at all.