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a note on Yana and Terry Herbert

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Prostate Cancer
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Posted 7/28/2014 10:24 PM (GMT 0)
Just got this email. Am taking out parts of the email that might violate the rules here.

YANA really helped turn things around for me during my darkest days, it's a remarkable site that really captures the power of peer to peer shared experiences.



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G'day folks from Down Under, which sadly will soon be my permanent address. My disease has galloped ahead over the last few months as will be seen from my story (insert link to story). If I can update it. FROM TODAY Mark Freedkin who has been tireless in his efforts in running the site and doing most of the work for the past two or three years will take complete ownership of the site and will be solely responsible for it. I know he will do a great job and I am sure you will support him too.

XXXXXXX (text removed)

I'm pretty darned annoyed that it looks as if I won't get my twenty year target although if I get to August 12 that would be my twentieth year!!
Posted 7/29/2014 12:18 AM (GMT 0)
He had a great 17 year run and I wish him luck, hope he can still find some treatments to keep things under control.

Went back to re-read his posts and what he wrote in August 2013 was a surprise:

The pathology results on the masses was the second big surprise. I have always been intrigued by the question as to whether all prostate cancer tumours progress and change from those with a low Gleason Score to ones with a high Gleason Score. My view was that this was not necessarily a universal rule. It is somewhat ironic therefore that a study published last week (Gleason Grade Progression Is Uncommon with an excellent commentary How low is the risk for Gleason score progression over time? confirmed my view. Yet despite my initial diagnosis 17 years ago of a GS 7a (or GS6 or GS5, depending on which of the three pathology reports I had) the histology report for the bits removed from my bladder all showed GS 5+4=9. No question of progression there!
Posted 7/29/2014 9:04 AM (GMT 0)
Thanks davidg for an update. I think Terry is getting ahead of himself a bit. He may take a medication that can make him feel good again for another year. Chemo really can kick the beast. I hope and pray that he will give another update from some exotic location. He has done an outstanding job for PC community around the world.
Posted 7/29/2014 12:31 PM (GMT 0)
The work Terry has done with YANA is amazing. He was the first person I consulted in 2007 and his prompt email advice led me here. Sorry to hear he is so unwell Davidg. Thanks for letting us know.
Posted 7/29/2014 2:59 PM (GMT 0)
You can go to YANA and read his entire story. It is very interesting.

Regarding Gleason progression, that may not be the case in his situation. I think he was a G7 based on his biopsy, but recently they biopsied a mass and sadly it was a G5+4=9 But he never had surgery. One of the advantages of surgery is that you do end up with a complete pathology, and very often it is different than the biopsy results.

However, it is also hard to believe that he started out with a G5+4, as his disease was very "slow-moving," it seems, for a long time.

All that being said, he has been fighting the disease for 17 years, and they have been good years for him. His WW approach (now called AS) has worked well for him. He has the right temperament for it. He really has a detailed blurb on YANA and it is an interesting read. I think this is the link:

http://yananow.org/display_story.php?id=984

Mel
Posted 7/29/2014 3:58 PM (GMT 0)
Creed - just want to point out, in case I gave the wrong impression, that Terry didn't ask me to post this. He probably has no idea who I am. I got the email either because I have contributed a donation there or because they emailed all members.

I only posted it because of the tremendous help that site provided to me and God only knows how many more. It's a fantastic resource/database.

Mel - I agree with you. At first my reaction was that had he treated it he would have gotten a full pathology, but then, looking at his age and how well he has spent the last 19 years of his life I realized that comparing it to me was futile. Hi hope things aren't quite as bad as Terry thinks they are and that they can provide him the type of care that will continue to extend his life without causing too many brutal side effects. One thing is for certain, Terry did this his way and I believe it worked for him.
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