Stories on Yana

Most men who have been in this Forum for some time will be aware of my (strictly non-commercial website) YANA – You Are Not Alone Now Originally set up to provide basic information in clear language for newly diagnosed men and their supporters (which it still does) it has grown into a significant resource because men have been encouraged to tell their stories; their reasons for making the treatment choice they made and the outcome of that choice, good or bad.

There are now over 1,000 stories on the site and I encourage the men who tell them to update them at least once a year. Because the site kept me very busy last year, I fell behind with the reminders I usually send out, but thanks to the sterling work done by George Hardy, who has been helping me with the reminders, we are up to October 2009 and hope to catch up completely by the end of next month.

Inevitably there are stories which will not be updated – about one in five, based on past experience. This may be because some men have simply got on with their lives and have forgotten what it was like to be a newbie, searching for some comfort; some have changed their e-mail addresses so they never get our reminders and some, sadly, may have passed on.

My purpose in posting this is twofold. If you have posted your story on the site and have not updated it for 12 months or more, could you please do so now, either by mailing me at terryherbert42@gmail.com (making sure you identify yourself with the same name you posted your story) or by going to UPDATE YOUR STORY

Of course new posts are always welcome and can be submitted by going to JOIN US Newbies tell me that it is of great value to read these stories and in particular why a specific therapy was chosen and what the long term outcome has been. That is the value of old timers joining the site.

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Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 7: No treatment. Jun '07 PSA 42.0 - Bony Metastasis: Aug '07: Intermittent ADT: PSA 2.3 Aug '10

It is a tragedy of the world that no one knows what he doesn’t know, and the less a man knows, the more sure he is that he knows everything. Joyce Carey

Soon as I get my next PSA reading next week and meet with my doctor the following Monday, was planning on giving you an update based on what has been discovered and/or decided.

David in SC

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Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Terry.......I discovered the YANA site just after my diagnosis and before treatment in '08.....it was another year before I discovered HW. The stories and info helped shape our research into a plan of attack. In the process, and after landing on a particular man's story, my wife engaged in a dialogue with this man's wife, who had offered her assistance when my wife contacted her by email. That relationship blossomed, and we eventually met the couple, and have continued to meet with them on a periodic basis since my surgery two years ago. The comfort, reassurance and information that was provided to my wife allowed her to plunge into extensive research that I was unable to do (as happens to a lot of us after being hit with the word "cancer"), which in turn, shaped our eventual path...........so kudos to you on this valuable site, and keep up the good work as well as your contributions here at HW.

Arnie in DE

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Age 56 (biopsy & surgery)-PSA-3.9-Biopsy 8/19/08--4 of 12 cores positive; 5% involvement, Gleason 6 (3+3) 1/26/09-DaVinci Prostatectomy at Presbyterian Medical Center/HUP-Phila, PA-Dr. David Lee
Path. Report- G7 (3+4)Adenocarcinoma, no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins
Continent at 3 mos.------ED improving
PSA at 2 yrs-<0.1

Yana is such a great site. Such remarkable stories, and so easy to navigate. Wish all the guys here, would consider sharing their stories there as well.

Not to say that this is not a wonderful site as well!!!

MiraBeau

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58 yr. old husband dx with PC in Dec.2010
PSA 139.9
Gleason Score 9 (5+4)
Biopsy 12 of 12 cores positive, majority 100%
Stage T3a N0 M0
Treatment HT and IMRT