'Going strong' was...... Peyronie's disease: Colchicine vs. Colchicine plus vitamin E

[Guest guest]

Sammy,

Some years ago after

you had reamed me out for what you regarded as my foolish, conservative

attitude and my ridiculous website, I resolved not to respond to any of your

posts, Maybe I should have kept that resolve, but since you have asked specific

questions:

1. <snip> What

were you diagnosed with ? <snip> Here’s the shorthand

version: Diagnosed

‘96: Age 54: Stage T2b: PSA 7.2: Gleason 7: No treatment until Jun '07

PSA 42.0 - Bony Metastasis:Started ADT Aug '07: May '08 - stopped ADT. May '10

PSA 8.20 : Recommenced ADT

2. <snip> " Still

going strong " I am curious.<snip> If indeed you are curious my full

story is at http://www.yananow.net/Mentors/TerryH.htm

You might like to mail

appropriate members of the 900+ list of men who tell their stories on my site

to see if you can recruit them for your crusade. The stories are indexed by age

at diagnosis, PSA, Gleason Score, date of diagnosis and treatment chosen. Since

your prime focus seems to be on younger men you might like to start with

the Age index which is here http://www.yananow.net/Chart-Age.htm

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and

still going strong

Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of sammy_bates

Sent: Tuesday, 22 June 2010 10:36

AM

To:

ProstateCancerSupport

Subject:

Re: Peyronie's disease: Colchicine vs. Colchicine plus vitamin E

Terry,

What were you diagnosed with ? " Still going strong " I am curious.

For your information. I had metastatic disease in 1996 with lymph node and

seminal vesicle involvement right from the start. My PSA was > 50 ng/ml

which made me demand a biopsy and some kind of treatment. B. 1947: Dx at the

age of 49. The urologists thought I was some kind of pretender .. or too far

gone to be of any help. They indicated RT after many months of banging on

doors. I demanded RP and got it. It was the right decision. In the UK alone about

800 men below the age of retirement die of advanced prostate cancer every year.

Possibly because they, or someone looking after them / advising them, who

should have known better, was a bit too complacent.

You can afford to be conservative if you have minimal disease. If your have

significant and well advanced disease as I did, it was a wake-up call for

everyone, including me. After finding out the extent of my disease, and

learning of my prognosis " Two years .. Five if you are lucky " (quote

from kindly urologist) I was frightened. Because I was very frightened, I

became enlightened. This enlightenment, more like an epiphany really, changed

the way I saw the world. Without it I would have perished within the allotted

time.

Anyhow, to cut (sic) a long story short, my surgeon had to cut out some of my

bowel to remove diseased tissue and that left me " incompetant " for a

while to say the least! I feel a lot more confident and indeed

" competant " now, after surviving 14 years against the odds.

I feel I have a right to blow my trumpet. Tell the world (at least that small

portion of the world willing to listen) about my experience, and my

interpretation of the events leading to my survival. I am not looking to

educate or illuminate -- I am just looking for meaningful feedback. I figure

there are a few guys out there with a similar background to mine, with the same

fighting spirit, and the same no-nonsense outlook.

This is a long distance call: If we can get together and exchange notes maybe

we can achieve what 70+ years of medical research has failed to do. Namely, find

an effective treatment for advanced prostate cancer that does not involve

castration, and all the nasty, unmanly things that go with this awful

treatment. A spin-off might be saving some of those 800 or so lives (just in

the UK)

every year from needlessly going under to this disease.

So, if you are out there guys, this is where to home in:-

www.FitCare.org.uk/epidemic/

... we can link up from there.

Sam.