April 2011 Data from YANA - You Are Not Alone Now

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Terry Herbert
Regular Member


Date Joined Sep 2010
Total Posts : 92
   Posted 4/19/2011 9:51 PM (GMT -6)   
For the sake of any newbies I’d just like to mention that my YANA - You Are Not Alone Now www.yananow.net site has contributions from more than 1,000 men giving their experiences following their diagnosis of prostate cancer.

Thirty of the stories were submitted by men who subsequently passed on – some of them from prostate cancer: some from other causes. Their families have agreed to their stories being maintained as a memorial to their loved ones.

All but 130 of the remaining stories have been updated within the last 12 months. The ones that have not been updated have by and large been retained because I feel they might be of interest and help. Most of the men are prepared to answer e-mails if anyone has specific questions about their choices and the outcomes.

Given the concern so many of us had when first diagnosed as to how long we were going to live, it is some comfort to see that 25 of the stories on the site relate to men who were diagnosed between fifteen and twenty years ago: 50 of the stories are for men diagnosed between ten and fourteen years ago and more than 400 from men diagnosed between five and nine years ago. These veterans are in a position to give some good examples of life after prostate cancer.

Most of the stories (563) relate to men who chose surgery - 224 RP (Radical Prostatectomy) and 339 RALP (Robotic Assisted Laparoscopic Surgery). That is followed by Radiation – 178 in all with 104 choosing EBRT (External Beam Radiation Treatment) and 74 choosing Brachytherapy.

AS (Active Surveillance) men total 99 with men on ADT (Androgen Deprivation Therapy) as a primary therapy close behind at 96 – many other men have adjuvant ADT and are indexed with their primary therapy.

PBT (Proton Beam Therapy) with 71; HIFU (High Intensity Focused Ultrasound) with 18 and Cryotherapy with 18 make up the balance.
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

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/19/2011 9:56 PM (GMT -6)   
Yana was literally a life saver for me. Reading dozens of the accounts there I realized I had a great shot at beating this and that's when I started to turn the corner and moved from despair to hope.

Terry's site is unique in that it not only allows us to enter the lives of fellow patients, but it also puts us in contact with them. I received emails from a few people there who don't even realize how important their emails were for me.
40 years old - Diagnosed at 40
Robotic Surgery Mount Sinai with Dr. Samadi Jan, 2011
complete urinary control and good erections with and without meds
Prostate was small, 34 grams.
Final Gleason score 7 (3+4)
Less than 5% of slides involved tumor
Tumor measured 5 mm in greatest dimension and was located in the right lobe near the apex.
Tumor was confined to prostate.
The apical, basal, pseudocapsular and soft tissue resection margins were free of tumor.
Seminal vesicles were free of tumor.
Right pelvic node - benign fibroadiopse tissue. no lymph node is identified.
Left pelvic node - one small lymph node, negative for tumor (0/1)

AJCC stage: pT2 NO MX

Terry Herbert
Regular Member


Date Joined Sep 2010
Total Posts : 92
   Posted 4/19/2011 10:46 PM (GMT -6)   
Thanks for the kind words, David.

Ooops. that address should be YANA - You Are Not Alone Now www.yananow.org
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

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/19/2011 10:48 PM (GMT -6)   
I guess I owe you an update...

Tony

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/19/2011 10:54 PM (GMT -6)   
Terry

I am laughing, because for all the times I have been to your site, never knew what YANA stood for until I read your post tonight.

I will have a fresh update for you for my story, around the first of June, after I meet with a new Medical Oncologist. Now that my SRT has failed, I am contemplating options, none I am particuarly fond of at this time.

You still have a great site going there, one I consider essential to the entire PC community.

David in South Carolina
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 margin
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, 2/11 1.24, 4/11 3.81
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 9/10

Radical
Veteran Member


Date Joined Mar 2009
Total Posts : 739
   Posted 4/19/2011 11:58 PM (GMT -6)   
Yep, I too love Terry's site, certainly hit that "PANIC BUTTON", a few times when first diagnosed. On Ya Terry...............Cheers Mate...........Kev
Kev 53yrs [Gold Coast Qld, Australia]
PSA 4 Gleason 7 [3+4=7]
RP 24/12/08 Dr Philip Stricker [Sydney]
Upgrade Gleason Score 7.6 [4+3=7]
Stage 2 Margin status- Focal Involvement
ED- okay with Meds.
PSA at 2 yrs, no change remains 0.03
"Every-day in Every-way I Get Better"

Terry Herbert
Regular Member


Date Joined Sep 2010
Total Posts : 92
   Posted 4/20/2011 12:58 AM (GMT -6)   
Kev,

That's not a "PANIC BUTTON" It's a "DON'T PANIC BUTTON." There is a difference smilewinkgrin

Terry Herbert
Regular Member


Date Joined Sep 2010
Total Posts : 92
   Posted 4/20/2011 1:06 AM (GMT -6)   
.... And YES, Tony, I think an update would be in order! Good news is always worth posting!
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

Terry Herbert
Regular Member


Date Joined Sep 2010
Total Posts : 92
   Posted 4/20/2011 1:06 AM (GMT -6)   
.... And YES, Tony, I think an update would be in order! Good news is always worth posting!
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
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, September 20, 2018 1:01 AM (GMT -6)
There are a total of 3,004,983 posts in 329,185 threads.
View Active Threads


Who's Online
This forum has 161755 registered members. Please welcome our newest member, SwollenColon93.
302 Guest(s), 9 Registered Member(s) are currently online.  Details
Billyboy5, Girlie, 142, dontscopeme, asiangal555, oregonhay, nakamura1967, lymelearner, kittytalk371