This is for UK guys/partners.

Note please: This is a story affecting only our UK guys and partners.

I'm sorry I'm late with this important UK story, based on the Sunday
Telegraph (Laura Donnelly, Health Correspondent  16/12/2007).

Here's a story appropriate in the season of Scrooge. Please note
carefully: where Mark Emberton, is quoted it's him. Anything else are
my views alone - and I know you'll all come in and correct any
inaccuracies in my understanding.

Up to now HIFU (High Intensity Focused Ultrasound) has been available
on the NHS in the UK. I've been treated twice with HIFU at University
College Hospital London.
Now instead of being available to all prostate cancer sufferers, HIFU
according to the report, is to be restricted only to those who have
failed to respond to conventional treatment and whose cancer has
returned.
The decision has been made by NICE. These medical bureaucrats are
supposed to judge treatments/drugs on the basis of cost-effectiveness.
But it is widely regarded as a body desperately seeking to ration
treatment on behalf of an incredibly incompetent government which
blunders billions of pounds away (inter-alia) by imposing on
specialists politician-controlled targets for treatment (aimed at
making the politicians look good, not at real patient benefit). And
the targets change day by day - which is what politicians do when they
fail and try to cover up.
Mark Emberton, the consultant urologist at University College
Hospital, London - and my own HIFU surgeon - was quoted as saying:
'The cost-effective argument is ludicrous, the economic argument is
completely fallacious. We've turned a five-day hospital stay into a
five-hour hospital stay. All you're doing is investing in a bit of
software and ultrasound kit."
The Sunday Telegraph reported also that Emberton "questioned the logic
.of only offering Hifu to men whose cancer had returned, while denying
it to patients in the early stages of the disease.
Questioned the logic? He must been incredulous. "HIFU concentrates
sound waves on a precisely targeted, tiny area of diseased tissue.
HIFU heats the tissue to about 100°C degrees and destroys it."
(www.drmarc.co.uk).  So NICE says, what? use it on a patient for
example with metastasis -spread all over? I had about 4 hours on one
target - my prostate. NICE are bureaucrats first and medical experts
second. Mark Emberton is a HIFU expert first, and first. So who is
right?
Nice, which has refused to comment on its new guidelines, will rule,
according to the Sunday Telegraph that there is insufficient evidence
to prove that Hifu has long-term value.
It seems that the NICE boys ('NICE' -how very inappropriate)  have
also done some self-serving non-reading. Research published only last
month in the European Journal of Urology found that eight out of 10
men were healthy five years after being treated with Hifu. Or perhaps
they never read the opinions of those they know are likely to disagree
with their politically-driven decisions.
NICE v.MY HIFU EXPERIENCE: After I was first diagnosed in 2005 I was
referred by the oncologist for six months anti-hormone treatment with
anti-androgen drugs, a Lupron shot every three months along with a
daily dose of Casodex. This would be followed by six weeks daily
radiation at a hospital miles away.
There are very many here, I know, who can advise me how my quality of
life would most likely have suffered with the drugs and radiation.
Any of:  nausea and vomiting, hot flashes, anaemia, lethargy,
osteoporosis, swollen and tender breasts and impotence. But it didn't
happen. I was very lucky. My first urologist Marc Laniado is a bright
surgeon specialising in non-invasive Pca treatments, and was training
in HIFU. He asked me if I would do it. It then depended if the UCLH
team would treat a patient of my age, with aggressive prostate cancer.
They were getting good figures with their non-aggressive patient
trials (trials were with patients with G7 as a limit). The way I saw
it, why skew them with one ageing old geyser like me? But they agreed.
I was more than willing. I trusted Laniado, I trusted what I read
about HIFU and I trusted Emberton, leader of the UCHL team I was
referred to -he had almost unique experience of using the new
techniques. So I had it.
Compare what has happened to me, a G9, Stage T3c patient approaching
80.  c.f. drugs and radiation.  I think the nerve of the UCLH team,
first time HIFUing on an aggressive-cancer patient old geyser, was
greater than mine!  I had HIFU on the prostate in 2006, and in 2007 on
the seminal vesicle (the Pc biopsy on it had been OK in '06. The
ability to have a second go is a feature of HIFU). I was a total of
four days in hospital. (This was two days longer than normal! Because
of age I suspect, the anaesthetic got to me a bit more). I had no
cuts, no bleeding. Some little pain after each but I never needed to
take painkillers post-op. I had a difficult few months after the first
op, when urinary channel scarring and exceptional blocking (other HIFU
patients I spoke to self-cathetered for a short while -but no
blocking) led to painful self-cathetering - but that cleared up. I
have had the occasional leak after the latest HIFU op (in August) but
it's minor and seems to be fading.
Now it seems metastasis is my only fear - and high-risk cancer means,
I think, that whatever is done first, however successfully, one is
eventually going to cop it. But if it happens - then I can go on to
the drugs and radiation. But it would be as a last resort. (Has NICE
asked Mr Emberton and other HIFU experts if HIFU would be a useable
tool if 'cancer returned'?)
Meanwhile I'm lucky. The original sites of the aggressive stuff seem
to have been firmly squashed without me suffering crippling
side-effects. Nothing's certain but I am able to see and try to
comfort my wife, now in a nursing home.

I have been fortunate. For others, no logical cost-effective argument
stands up for blocking HIFU treatment. It could mean a serious
deterioration in sufferers' quality of life against what they might
have had. It might cost lives.
I'll leave (most) of the last words to the experts. My apologies, I've
lost who I picked up this quote from:  "Doctors working in the field
want to eradicate the cancer while causing minimal 'collatoral damage'
to sexual and urinary functions. Nice has the luxury of time to hedge
its bets and await the results of long term medical trials, which
could take decades to provide results. New treatment options take us
nearer to the "Holy Grail" of effective treatment with minimal
side-effects."
But I'm going to have the last grouch. If NICE had stopped a new
treatment without serious side-effects for breast cancer sufferers,
the howls would have been all over TV and in all of the newspapers -
incessantly. But not a peep. Nothing. Nada. (This is written with the
greatest respect to women patients, with whose suffering we closely
relate, as with all cancer sufferers). It is a function of the
overbearing importance of women's matters in the media.

In the UK, Pca's "annual death toll … is the equivalent to the
crashing of a fully laden jumbo jet every fortnight." (Prof Roger
Kirby - chair of the charity Prostate UK). Yet compared with breast
cancer, it is tucked away out of sight, substantially less funded,
rarely mentioned in the media.

As a result it's safe to hit Pca patients in the UK. No political
comeback.