Yana updates

[Guest guest]

I have been running a non-commercial website - You

Are Not Alone Now www.yananow.net

for a number of years now. The second section of the site of the site was set

up in the belief that there is tremendous value in reading of other people's

experiences with prostate cancer and also recognition that it might be helpful

men diagnosed with PCa (and their families or partners) find someone to 'talk'

to; someone who had dealt with the same issues and problems. Contributors are encouraged

to update their stories at least once a year. The current week’s list of

new contributors and updates is below

I am running a couple of Mini Polls to get a better

focus on what readers think is important in a story and how long I should keep

stories if there is no update. If you could visit the page and register your

votes (six clicks it should take!!) I’d be grateful. The polls are at http://www.yananow.net/MiniPoll.htm

NEW STORIES

http://www.yananow.net/Mentors/MarkC2.htm

MARK CAMPAGNA - unusual diagnosis

with a Gleason Score of 5 – he chose surgery and is concerned about ED

http://www.yananow.net/Mentors/J.htm

PAUL JOHNSON has gone back on ADT

(Androgen Deprivation Therapy) after failure of salvage radiation therapy

following his failed surgery in 2006

http://www.yananow.net/Mentors/L3.htm

JOHN LIGHT diagnosed in 2004, choosing

EBRT (External Beam Radiation Therapy) which failed; had ADT (Androgen

Deprivation Therapy) and is now hormone refractory – looking for help

http://www.yananow.net/Mentors/SocDoc.htm

SOC DOC chose surgery and is waiting

for his first PSA

http://www.yananow.net/Mentors/K2.htm

STEVE KRAMER on the cusp of

Gold Membership, he chose surgery in 2000 which failed, but he has managed

progression with ADT (Androgen Deprivation Therapy)

http://www.yananow.net/Mentors/MikeC2.htm

MIKE C had Brachytherapy – Seed

Implants – in early 20008 and although there are minor urinary problems,

he is happy with his outcome

http://www.yananow.net/Mentors/JeffD2.htm

JEFF DUNAWAY diagnosed in August is having

RALP (Robotic Assisted Laparoscopic Prostatectomy) on Sept 14.

http://www.yananow.net/Mentors/SportyJ.htm

SPORTY JERALDS very

happy with the outcome of his RALP (Robotic Assisted Laparoscopic

Prostatectomy) earlier this year

http://www.yananow.net/Mentors/RichL2.htm

RICH LONGTIN was considering brachytherapy

with adjuvant ADT – seems to have had some curious advice along the

way

http://www.yananow.net/Mentors/Mc.htm

DAVID MCGEE comes in as a Silver

member after taking the Active Surveillance option five years ago

http://www.yananow.net/Mentors/RickC.htm

RICK COLE newly diagnosed and

undecided

UPDATED STORIES

http://www.yananow.net/Mentors/I.htm

GARY I half way through his 42 IMRT (Intensity Modulated Radiation Therapy) treatments

he’s very happy with his choice

http://www.yananow.net/Mentors/MelP.htm

MEL PANTHERSFAN - first post treatment PSA

is 1.8 and, like virtually most proton beam men, he is very happy with his

choice and his experience

http://www.yananow.net/Mentors/LenA.htm

LEN AIREY – developed

a stricture after surgery which was resolved after some cyberspace exchanges

– so far so good and his detectable PSA of 0.04 is stable

http://www.yananow.net/Mentors/M2.htm

DAVID M his extraordinary saga continues

with another negative biopsy after the disagreements on the first and

second

http://www.yananow.net/Mentors/KenM.htm

KEN MCWILLIAMS– eighteen months

after RALP (Robotic Assisted

Laparoscopic Surgery) he has no more ED

problems and PSA is undetectable

http://www.yananow.net/Mentors/RobinH.htm

ROBIN H - the youngest member – 34

at diagnosis - reports in 12 months after RALP – all going well thanks to

Viagra

http://www.yananow.net/Mentors/DonG.htm

DON GREGGS -

Platinum member diagnosed in 1991 and choosing surgery which failed is to have

radiation following positive bone scan

http://www.yananow.net/Mentors/E.htm

ROBERT ELLIS - another member,

diagnosed with T4 disease only last year has passed on

http://www.yananow.net/Mentors/H.htm

TIMOTHY HOTUJEC – Silver

member who chose surgery as primary treatment, which failed and is now

concerned about possible metastasis

http://www.yananow.net/Mentors/JimJ.htm

JIM JAUCHEM Silver member who chose

surgery and whose PSA eight years later is undetectable and who has no problems

http://www.yananow.net/Mentors/V2.htm

JOHN VONHOF chose EBRT (External Beam Radiation Therapy) and ADT

(Androgen Deprivation Therapy) now has gynecomastia

http://www.yananow.net/Mentors/J.htm

PETER JACKSON Silver member is back

on ADT3 in view of rising PSA

http://www.yananow.net/Mentors/KentW.htm

KENT WILLIAMS has decided to go for

proton beam at Loma , despite not getting insurance approval

http://www.yananow.net/Mentors/RichB2.htm

RICH BROWN - has just completed a year

from RALP (Robotic Assisted Laparoscopic Prostatectomy) – some slight

incontinence and ED problems

http://www.yananow.net/Mentors/AlanC.htm

ALAN CHARLTON - was told earlier this year

that his original PSA was not 1,500 as he had been told, but 2,100. Has had a

rollercoaster ride with his PSA numbers since his last update in May last year

http://www.yananow.net/Mentors/PatP.htm

PAT PRIESTLEY had a really bad

problems with shedding brachytherapy seeds – a TURP (Transurethral

Resection of the Prostate) helped in the end

http://www.yananow.net/Mentors/BenP.htm

BEN PARRETT has had his seed implants

and will review progress next month

http://www.yananow.net/Mentors/ChrisM.htm

CHRIS MERROW has had a number of

problems, some prostate related, some not, which have added up to an unhappy

year

http://www.yananow.net/Mentors/AlA.htm

AL AL a little over a year

after RALP (Robotic Assisted Laparoscopic Prostatectomy) is happy with the

outcome

http://www.yananow.net/Mentors/C.htm

GARY C chose Active Surveillance

and his latest biopsy did not find any adenocarcinoma – just a deal of PIN

(Prostatic Intraepithelial Neoplasia)

http://www.yananow.net/Mentors/TomC.htm

TOM C had brachytherapy in April last year

and all’s well

All the best

Terry Herbert

I have no medical qualifications but I was diagnosed

in ‘96: and have learned a bit since then.

My sites are at www.yananow.net

and www.prostatecancerwatchfulwaiting.co.za

Dr

“Snuffy” Myers : " As a

physician, I am painfully aware that most of the decisions we make with regard

to prostate cancer are made with inadequate data "

[Guest guest]

Thanks for the update, the vote and the

suggestions, Mick.

One thing that has become increasingly

clear as more votes have come in is that the two issues that people regard as

really important in reading these stories are:

1. How and why people arrived at the

decision they made when choosing a treatment and

2. What the long term effects are of the

treatment chosen

The first is reasonably easy to deal with –

I can ask people to be specific in spelling out the how and why of their

decision, but the second is more difficult because the only way this information

can be gathered is if the men keep on updating. I know from my experiences over

the years that there is inevitably a ‘fall-out’ in the number of

men updating. This can be of a number of reasons. I think that possibly the

most common one is that they have changed their e-mail address, so my reminders

don’t get to them and having gotten on with their lives, they simply

forget to put in an update. Another potential reason is that they have passed

on – not necessarily from PCa, but from some other cause, which is still

more likely in most cases. We have to remember that most men are diagnosed

fairly late in life at a time when all manner of disease and illness are

attacking them. I will be trying to stress, in the early stages of the stories

being put on the site how important it is to continue updates and notify me of

change of e-mail address although I don’t know that will make much

difference.

The other thing I will start trying to do

is to recruit more ‘vintage’ people who are prepared to share their

stories, asking them to spell out how and why they chose their treatment and

what their long term outcome has been, both good and bad. There is an inherent

problem in this because there is likely to be a higher proportion of men with

problems in that kind of response, simply because, it seems, most of the people

on Lists like this have problems.

Again my thanks for your input and

support.

All the best

Terry Herbert

I have no medical

qualifications but I was diagnosed in ‘96: and have learned a bit since

then.

My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za

Dr

“Snuffy” Myers : " As a physician, I am painfully aware that most of

the decisions we make with regard to prostate cancer are made with inadequate

data "

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of dolphin_79605

Sent: Sunday, 13 September 2009

8:51 AM

To:

ProstateCancerSupport

Subject: Re:

Yana updates

Terry, I sent the following update just this minute. Thank you for the

prompting. I also took the deletion poll/vote. Possibly those choices could be

made as part of the sign up procedure and automatically implimented as per the

individuals's choosing?

I know at least one PCa person has contacted me from my town regarding posting

on Yana. Thank you for your service and site.

Respectfully, Mick -- Abilene,

TX

2009 Sep 12 Update to Yana from Mick:

RRP anniversary. PSA was still .01 The Uro put me up to annual visits instead

of every 6 months. Will report back after the next visit in May 2010.

I am still running. I ran marathon #3 on April 26 in Oklahoma City, Oklahoma

as part of the " Memorial Weekend to Remember " . The run was in memory

of the lives lost in the Federal

Building disaster.

I am currently in training for marathon #4 which will be Oct 17, 2009. I am not

sure where all this running is going, but it gives me something healthy to do

and an activity at which I can at least strive to improve.

I might get off the road and take up trail running next training season. I

would like to travel a bit. Maybe I could meet other survivors, run and see

parts of the country at the same time.

Cheers, Mick -- Abilene, TX

PS: I have been giving some thought to taking up fishing again too.