<snip a lot of stuff>

Mike

You realise you're the Pioneer of HIFU in this ng. We should all be
interested in your outcome and any Side Effects you may encounter.

I am one of the few here that's had HDR Temporary Brachytherapy with
additional EBRT and Hormones over 18 months.

My PCA is undetectable 4 mths out from end of Hormones, but expected
to bounce a tad within another 6-8 mths.

I DO have quite a number of "collateral damage" SEs, which I'm working
on with my GP (PCP)

As far as I know, HDR Brachytherapy is also relatively new, there
hasn't been enough time to produce any cyclic datasets such as the
Sloan Kettering Nomograms used in conjunction with the "Gold Standard"
RP histories.

So we are guinea pigs.


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Had Hifu -2
Re my HIFU (Sonablate 500) op - under Mark Emberton's team at UCH
London
please see my previous personal details.  If you need summarised info.
about HIFU it's simple and clear at:
http://www.drmarc.co.uk/Prostate%20cancer/HIFU.htm  and more detailed
at
http://www.prostate-cancer.org/education/novelthr/Chinn_TransrectalHIFU.html

I was admitted UCHL April 9th for pre-op procedures and 'done' on the
10th.   The hospital's notes described their HIFU procedure as: " …..a
treatment for prostate cancer using highly focused ultrasound
delivered from a probe which is positioned rectally. It currently
takes between 3-4 hours to perform due to the high degree of accuracy
needed to focus the ultrasound waves. You will be asleep under
anaesthetic during this time."

My pre-ops Sunday were simple - no further TRUS thankfully, just the
routine blood, blood-pressure checks, saturation and ECG etc stuff.

Have waited a week to see how things first pan out, but here are the
more detailed notes as required and promised to the ng.  As I'm the
first detailed poster for this new treatment please bear in mind a few
points.

My age is 78; I have one or two other charming medical conditions
which for all I know may effect the treatment; and although the UCH
team have performed more than one hundred HIFUs, I was the first in
the UK to be treated above Gleason 7 - I'm a 9.  So am I typical? Will
my experience apply to everybody else? -your guess. But I rather hope
lots of lovely positive aspects will emerge.

Also understand I was admitted as a patient under the UK NHS which is
free but with large open wards stuffed full and where the medical
staff are always overworked.  Comms systems between specialists and
wards must therefore be good. I have to note that in UCH - a top and
almost brand new teaching hospital, they aren't. There's some
convoluted computer shake-up going on which may one day work.
Meanwhile the admin makes the docs -and nurses - tear their hair. I
can guarantee this, because my anaesthetist came in fuming early
morning on the day of the op. "You've been hiding" he bawled at me,
having had to barge about the hospital about half an hour looking for
me. Nobody could tell him where I was. (Same when my kids phoned).
(And see FOOTNOTE below).  

This admin cock-up did affect my treatment. I'd had a wake-up call via
enema at 6 o'clock (easy - no nasty scouring|) ready for the op due at
8.30 am. But these guys don't have time to laugh at their good fortune
and sit around having coffee if the patient doesn't turn up. The Ford
production line has it easier. Somebody else got wheeled in.

Ready for the 8.30 am "off" Monday  I'd had nothing to eat since
Sunday supper, (officially was nil by mouth from midnight) and water
at 3 am. But I was not wheeled away, with my nails bitten a little
lower, until 4.30 p.m

Before that I had been seen by Mr Calleury. He said his finger would
be on the HIFU mouse. I don't know much about him except he's a nice
guy, but he's part of  the  Emberton team so I'm happy.  

At 4.30 I said hello again to the anaesthetist and he was better than
Houdini because a second later everybody was yelling at me from afar,
"The HIFU is over Michael, it's over".

In the Recovery room I was rather a long time coming properly around,
and breathing properly. It happened to me once before years ago from
too much anaesthetic. I was quite a long time "under" after all. And
maybe my age. I count it in a compartment separate from the HIFU but
it's part of my experience so report it here. I stayed in an extra day
- saturation a bit low, said nurse. Son Jeremy and my two lovely
grandkids picked me up Wednesday. I'm a bit tired but quite OK now.

I knew it would all go well because I was on the seventh floor with a
great view of London -including St Pauls, and my old college across
the road -and arching beautifully over it all, the night before the
op, was a spectacular rainbow; clearly, a good omen.

The good news is that everything has remained stable in the week since
the op. No pain - and flow remaining clear and steady. The catheter
-which has a simple flat plastic on/off tap, instead of those awful
bottles, has worked fine. Well tailored too, no sign of a leak, unlike
previous experiences.  I could connect up to a bottle at night but
have been advised not to.  I think it brings a greater chance of
infection. I have to drink at least two litres of water a day. So I've
been up three and sometimes four times a night. It's quite tiring. But
I go back to hospital to have it out in only ten days time, so that's
tolerable.

The sharp pinch to the end of my penis when the catheter flow stops,
which I reported in the first days, has stopped - or I've got used to
it.

I've been shown how to use a bladder wash, if there's any blockage -
I wasn't looking forward to this - but I found out it couldn't be
simpler and easier. Haven't had to use it yet.  I have a spare
"nozzle" and shown how to change it (easy) after a week.

After the catheter is out, the hospital writes: "Once the catheter has
been removed (at two weeks), patients often find that their urine flow
is reduced (again due to the accumulation of prostate debris). This
usually resolves over a period of 2-3 months; however there is a
chance that you may not be able to pass urine at all. In order to
prepare you for this possibility you will need to be taught how to
pass a temporary catheter yourself to relieve the blockage. This is a
very straightforward technique to learn and is relatively simple to
perform."   Arrgh, as they say. But after my unjustified fears of
self-wash, am now more prepared to believe hospital may be right!

Other facts. I mustn't pick up anything heavier than a kettle of water
for two weeks. (My wife points out that doesn't need to include the
washing-up.)

Do I know much more? Not a lot. The NHS is great for (eventually)
getting the treatment but contact with your specialist team (even if
they can find you) is minimal. I saw my surgeon five/ ten minutes
before having the op and five/ten minutes after when he thought he'd
done some good targeting of the nasty bits. Have to wait three months
for PSA tests to come to a conclusion -and be sure he didn't also hit
any nice bits.

My next contact will be with Mark Emberton's out-patient clinic two
months after  the op.

Will post again if something changes, or at next steps -will keep ng
informed.

FOOTNOTE: Excerpt from The Times April 11 2006.   

"Leading academics called yesterday for a formal audit of the National
Health Service's £6.2 billion IT scheme over fears that it is behind
schedule, over budget and not secure. In a letter to the Commons
Health Select Committee, 23 professors raised questions about the
system, its progress and whether it will work.

The concerns were brushed aside by the Department of Health….."