I give some links at the end.

First. Some apologies. I have gained much from reading some pointed
and caring information here from the best source about PCa - those who
have been there, done that for years. When I first posted about my
coming HIFU in 2006 it was to add to the information. But I haven't
yet followed up with experiences as I promised to do. I do have a
reason. My wife of 55 years had Alzheimers and I was looking after her
24/24. When she went for a spell in hospital for an infection, she
fell and fractured her thigh and was flat on her back. Her mental
state went downhill. She was then admitted to a nursing home. After
three weeks there she fell and broke her left hip. All repaired, but
can't walk and  mental health, unsurprisingly, worse. I visit her
every day. It is very distressing. She was incredibly energetic, and
bright; we met as fellow undergrads.  My own brain cells have also got
a lot flabbier; concentrating and writing harder. But now I need to
keep my promise as I am up for a new HIFU in less than a week's time.

Briefly (which didn't use to be my style), for new readers: In 2005 I
was diagnosed with a prostate Gleason 4+5. HIFU (High Intensity
Focussed Ultrasound) was, and is, a new technique for destroying
cancer cells. UK trials were being led from University College
Hospital London.  "The benefit of Hifu is that it is non-invasive -
there are no cuts and no radiation. It can also be done as a day-case
procedure," wrote Mark Emberton, the consultant urologist leading the
trial. (Honest, for the usual sceptics, I'm not on a percentage - I'm
giving strict info from where I got it - and needless to say endlessly
checked elsewhere). Trials were limited to below Gleason 7 patients.
And no old geezers included.

I was the awkward squad. I was age 78, my Gleason 9. But Mark Emberton
agreed to take me on, outside the trials, the first above G7 and
getting on a bit.  So, as the tabloids might have put it, but didn't,
"I Was a HIFU Guinea-Pig".

Subsequently: a) I am still here - HIFU did a great job on the
prostate - it was, you might say, if you were Tony Soprano, whacked,
or as my consultant noted happily, ablated.

b) I am due to have a second HIFU within a week (HIFU is repeatable
if needed) -on the Seminal Vesicle (SV).

At last, we get to: My HIFU Experiences:

Monday April 10th 2006 I was operated on for four hours. I was out on
Wednesday - a day later than due as I was very woozy after the
anaesthetic (other guys -same day). I had absolutely no pain following
the procedure. A catheter insertion was part of the op. It was no
problem -especially with a tap on the end -just open it when you want
to go, like ordinary peeing. It was taken out April 26th.

The only side effects have been urinal.  The rest of the year I
developed some urge incontinence (you get about a minute between
feeling you gotta go and getting there) and also some stress
incontinence (yawning, bending down, coughing), and general difficulty
peeing. This is caused by scarring in the urethra. I had to
self-catheter from time to time. For the nervous like me, the thought
may be awful. But it then becomes really no big deal. Takes only a
minute or two.

I developed a problem with it however - caused by a feature of the UK
Health Service. At the end of the day you get action by some skilled
surgeons. Costs nothing except years of taxes. But in between times
it's a minimum three months between consultations. And after waiting
an hour and more for your appointment in a massive queue of
outpatients, half of whom seem not to be able to speak English, and
some  clearly  will never have paid any UK taxes as I have all my
life, (racist remark? I'm too old, and grumpy, to care about
politically correct epithets drowning a simple truth) - it's a quick
five-ten minutes and then "Next" -even with the brightest consultant.

For a few monthsI had difficulty and pain, self-cathetering. I was
gripping and pushing the catheter in like an all-in wrestler and it
was bouncing out. Replies to my email questions were that I try a
different catheter. Same result. In October I'd had enough and paid
for immediate private treatment with my original urologist, who is
local and really bright - he'd got me into the HIFU programme in
London. After cystoscopy he told me he didn't know how I'd cathetered
at all, as the entry to the bladder was closed. Dilation followed
-also back in London which was followed up by a five-minute op. to
make a larger incision in the bladder. After that much less
cathetering and no problem when I did. As of today sixteen months
after the op, it all seems to have settled down with no further
cathetering.

My upcoming HIFU
At the time of my firt HIFU a biopsy revealed no problem in the
Seminal Vesicles. An MRI scan this year indicated Pca had spread to
the left Seminal Vesicle. The subsequent biopsy was Gleason 3+4  (T3B
No Mo) better than my long departed prostate 4+5. Recently  My problem
in dealing with the SV is described as "complicated". At one time Mark
met the Radiology and Drug treatment specialists in the hospital to
discuss what was best.

This is my layman's understanding of my situation. The seminal vesicle
is stuck on the bladder; also the bottom of the Ureter, a tube from
the kidney for urine flow, nearly meets the SV. The MRI scan suggested
a possible cancer spot at that point (dilation) but it may also have
been due to a full bladder. The distance between knocking off the SVca
and the dilated spot is tiny. In my case the affected SV is on the
left side; as the dice would have it that's also the side of my much-
treasured one-and-only (congenital) kidney. So, proceed with care
please - and, if you'd be so kind, with supreme accuracy! The
Sonablate 500 HIFU system used at UCH works in computer-controlled
real time, and this, I am advised gives greater opportunities for such
tiny calculations. Hopefully, this will be proved correct next week!
HIFU is in any case very new. But, one way or the other, in dealing
with all the combinations of my precise condition, including I suppose
that I'm 80 shortly, there is almost no experience with HIFU. The side
effects are the usual urinary problems, or a fistula (rectum getting
involved, definitely don't want) - the same as if I had had radiology.
But it seems they can be fixed, would be only temporary. (Still don't
want the F word.!)

For all the reasons I asked for the boss to do the op. The team it
seems share my desire. That's reassuring. Mark has probably got more
experience than anybody in the UK in this process.. I have every
confidence in him.

I had been seriously considering whether or not I wanted to undergo
more treatment. A recent MRI scan showed I have developed no
metastase, which considering the aggressiveness of my Pca is
excellent. I asked if it would definitely spread if I don't deal with
the SV. Yes. This seems backed up by my PSA readings.:

PSA             14.11 October 25 2005
(HIFU op, April 2006)
PSA Post HIFU 2006
June 30          0.681
July 25         0.812  
October 23         2.6
November 21      3.0
2007  
26th February     4.9  
5th July                 6.0

My PSAV (velocity - see http://pcngcincinnati.org/psa/calculator.html
for a brilliant easy calculator) is a trifle over the top.

I don't have any fears except for F even short term. As to the outcome
I am most concerned about my wife. She knows when I am I am with her.
I have arranged to go into her nursing home the first days I am back.
This will give me a rest - and my wife is sure to be able to see me,
as normally I have to drive, otherwise over a week or more she is
likely to worry.

Sorry this is, after all,  long again. Sure to have missed things. May
be a little time before I contact again. But I would most welcome all
the usual valuable comments.

These are HIFU links I gave in my first post, and still are as good as
any.
Mark Emberton is Senior Lecturer in Oncological
Urology,(http://www.ucl.ac.uk/uroneph/review99/m_emberton.htm) UCLH
London

For a good introduction to HIFU, and all aspects of prostate
treatment, especially non-invasive, Marc Laniado is at
http://www.drmarc.co.uk/ and I can vouch that he's top class.

You can read excellent detail about HIFU on:
http://www.prostate-cancer.org/education/novelthr/Chinn_TransrectalHIFU.html.