Changes to the Yana site

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Terry Herbert
Regular Member


Date Joined Sep 2010
Total Posts : 92
   Posted 1/22/2011 7:23 PM (GMT -6)   
Before I went on my recent vacation I set in action a project to make some significant changes in the Yana site. These were aimed at allowing me to process information more rapidly as the numbers of contributors to the Experiences sections grow and also to enable people to access the data I have more conveniently and quickly. Thanks to a very helpful contractor and some sterling work by George Hardy, who I cannot thank enough, the data is now all loaded and can be accessed here TREATMENT EXPERIENCES

Apart from the categories I included previously, I have finally got the location (Country or State of residence) sorted out so it is easier for men to find and communicate with other men in their own country or state and I have also included an Update sort, so that it will be simple to see whose story has been updated lately.

As at the close of business today there are 1,022 stories. The man who have submitted them range in age from 34 to 78 when they were diagnosed. The median age for diagnosis is 57 – about 10 years younger than the median age for diagnosis in the US. The men had PSA levels in a range from 0.10 to 7,000 (Yes, seven thousand) with a median of 5.3 ng/ml. The most common Gleason Score is 6 (51%) although there were many GS 7 scores – 32%. At each end of the Gleason range are 19 men with a GS of 4 or 5 (they would not be diagnosed as having prostate cancer in the US today) and 11 with a Gleason of 10.

The majority of the men chose Surgery (321 chose RALP (Robotic Assisted Laparoscopic Surgery) although there were some who chose Manual Laparoscopic procedures and 222 chose normal RP (Radical Prostatectomy). Radiation was the next most common choice with 175 men (104 chose EBRT (External Beam Radiation Treatment) and 69 chose Brachytherapy).

AS (Active Surveillance) accounts for 98 of the entries; ADT (Androgen Deprivation Therapy) for 92; PBT (Proton Beam Therapy) for 68; HIFU (High Intensity Focused Ultrasound) for 18 and Cryotherapy for 13. There were 17 men who were Undecided but who may have made their decision and not told me.

I hope the changes will help you access the site. I have tested what I can, but if there are any problems, please mail me Off List at terryherbert42@gmail.com
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 1/22/2011 7:25 PM (GMT -6)   
We were already on it, Terry...

Here is the link to the previous discussion on your changes...

www.healingwell.com/community/default.aspx?f=35&m=2008361&r=x

Nice job, by the way!

Tony

Post Edited (TC-LasVegas) : 1/22/2011 6:32:10 PM (GMT-7)


Terry Herbert
Regular Member


Date Joined Sep 2010
Total Posts : 92
   Posted 1/22/2011 7:52 PM (GMT -6)   
My apologies, Tony. I should have realised that you would have got onto it and checked before I posted!!

I'll post another link then. If anyone wants to see what I got up to on my vaction can go along to White Christmas Tour 2010

White Christmases are a standard feature on our joint Bucket List
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 1/22/2011 9:50 PM (GMT -6)   
LOL...I've been following you across Europe on Facebook...Looks like you and Anthea had a blast. A wintery blast at that!

Tony

Terry Herbert
Regular Member


Date Joined Sep 2010
Total Posts : 92
   Posted 1/22/2011 10:47 PM (GMT -6)   
What a trip indeed!! Anthea says it is the last - but then she also said that in May last year when we got back from the US - and less than six weeks later spotted the ad for our winter cruise!!
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

Radical
Veteran Member


Date Joined Mar 2009
Total Posts : 739
   Posted 1/22/2011 10:57 PM (GMT -6)   
Hi Terry,

Mate love your new Web site, I am continually referring newly diagnosed to it.
I think its a great place to start the journey, full of valuable information and real life experiences. Your work in this field is greatly appreciated..........................Cheers Kev
Age 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
"Everyday in Every-way I Get Better'

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3623
   Posted 1/22/2011 10:57 PM (GMT -6)   
Terry, Thank You for developing your web-site and making all that information available..It is a priceless resource.

Terry Herbert
Regular Member


Date Joined Sep 2010
Total Posts : 92
   Posted 1/22/2011 11:08 PM (GMT -6)   
Thanks guys. I think it is a worthwhile site although over the years many of the 'scientists' mong us have argued that anecdotal evidence has no value and that it is very dangerous for anyone to make a decision baed on that alone.

My point is that anecdotal evidence surely has a place: that we can learn much from others real life experiences but at the end of the day, we still need to find a doctor who agrees with what we propose to do after we have weighed and evaluated everything that we think is valid. We can't go down to the DIY store and order up a HIFU set because a bloke on a site said it was a good therapy!!
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

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 1/23/2011 1:28 AM (GMT -6)   
Terry, great changes on a great site, I am proud to have my story on it.
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

Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 3049
   Posted 1/23/2011 2:26 PM (GMT -6)   
Nice site...and the changes are great...I guess I will have to break down and put my story out there for other 40 year olds to read...
Nov. 2009 Dx at Age 44
Dec. 2009 DaVinci Robotic Surgery
Jan. 2010 T3b, Gleason 9
Feb. 2010 Adjuvant Radiation

PSA History:
-----------------
Nov. 2009 4.30
Feb. 2010 <.05
May 2010 <.05
Aug. 2010 <.05
Nov. 2010 <.05

ChrisR
Veteran Member


Date Joined Apr 2008
Total Posts : 814
   Posted 1/23/2011 2:38 PM (GMT -6)   
Terry,

I like your site and use it a lot. However, one thing that is sort of difficult is that people are sorted by their biopsy Gleason score. When you then read about some of them you find out they were upgraded after surgery. It would be nice if there was a way to sort by post surgery gleason score and stage as well. That way you could really see if the trends of the people in your site follow any outside studies. I have done this manually a couple of times and the results were interesting.
Dx @ 42years old on 4/2008
Gleason 6 (tertiary score 0)
open RP 10/08 Johns Hopkins
pT2 Organ confined Gleason 6
PSA
10/15/2009 <.1
10/15/2010 <0.03
10/15/2011 -

Terry Herbert
Regular Member


Date Joined Sep 2010
Total Posts : 92
   Posted 1/23/2011 9:39 PM (GMT -6)   
Thanks for the input Chris. I always appreciate such comments. There are two aspects I considered in this reagrd.

In the first place, there is a limit what can be put in one line without that line running off the screen. So we had to think hard before we set up the original tables. We decided on clinical Gleason Scores because all the available nomograms at that time (and most now) use the clinical Gleason Score for initial probability calculations.

The second point is that (a) almost half the men on the site would not have any score other than their clinical (diagnostic) Gleason Score because they did not choose surgery and (b) men who do choose surgery often do not say what their pathological Gleason Score is - to get that would involve more correspondence for me - and I am a little pushed for time.

So, yes I agree it would be a nice thing to have, if only to demonstrate that the studies showing that Gleason Scores are also downgraded (in about the same percentage of cases as they are upgraded) are or are not reflected in the Experiences posted.
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
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