My fingers slipped and I sent the subject matter only first time. This
post might be more informative!

T2b-T3b NO MO
Gleason 4+5
1 of  9 cores positive, left side
Maximum cancer core length 70%;
PSA 17ugs/ml
78 years, still vertical, of mostly sound mind.

In brief:I'm going to be HIFU'd - High Intensity Focused Ultrasound -
(=powerful sound waves to melt away the nasty bit).  I'll be 'done' in
May at the latest, in the UK. First trials here have just concluded on
"low-risk" patients. I'm not eligible for those but will be the first
"high risk" Pca patient to have this treatment. The treatment is best
where the ca is contained within the prostate -and  I qualify there.
Microscopic metastase may well have occurred -and may well not. If
it's 60/40 or whatever why decide it's not  the 40?  You never let the
buggers get you down. Should I eventually metastase, I'll still be
saved probable urethral complications. I am meanwhile on Casodex.

My objective: A cancer free prostate, and hopefully cancer free, with
minimal treatment and minimal side effects.

Why I'm posting : Recent posts asked for HIFU patient info. It seems
no members of this ng have had HIFU.  At the same time the posts have
in general been negative or even cynical. (See the thread "HIFU" 8th
March started by 'rosbif'). This is quite understandable. Snake oil
salesmen are as old as illness itself.   Doubt is a valuable strategy.
And we must pay attention here as some of the ng doubters are
obviously well qualified researchers and statisticians.  

But I'm a very willing volunteer. So apologies for a long post
especially to veteran ng battlers who might be yawning even now.  But,
just now, my own belief is that HIFU is likely to be an important step
forward for Pca sufferers.

So in case it helps, here's an idea of my thinking for deciding to go
ahead, with URL sources for details.  And I'll be here later of course
with the proof of the pudding: I'll be clicking away merrily to report
to this ng after the event.  
Thinking:  It is little understood, outside our band of ailing
brothers, that we have to gamble on treatment more than most - or
maybe any - groups with a potentially terminal illness. Probably no
other patients' group is offered such a wonderfully multifarious
combination of treatments, none of which are guaranteed to work. The
specialists simply do not have a solution. ( See one specialist's
rather careful summing up, on Marc Laniado's website [URL below] where
he writes: "The situation is often difficult and experts frequently
disagree. A careful decision needs to be made usually in conjunction
with consultants in radiotherapy and urology.")
Our specialists are skilled at analysing the odds. They present us
with the odds - multiple anti-androgen, radiation, and surgery
treatments, and any combination thereof -not to forget 'watchful
waiting'. (That says it all about possible side effects. Is ww
'treatment' recognised in any other illness than Pca?) They advise us
which gambling strategies might be best for us. But we are asked to
throw our own dice. It is for us to consider which side effects may be
unacceptable in a procedure which may fail to cure. The gambling odds
are laid out for us notably in the Partin Tables (see URL below).

Now here comes yet another throw of the dice (groan, groan), HIFU.
Aye, and there's the rub, for the dubious. It's too new for any
comparable statistical evidence.

I was recommended for it by my urologist Marc Laniado.  I had a pretty
good recommendation when I was first in hospital for a TURP and was by
sheer chance put on his list. Another doc said "you're very lucky to
have him". I was mightily cheered. (I'm an NHS proletarian non-paying
[and too old and too nasty to insure] patient. It's free. But we
oftimes have to accept what we're given).  Marc's website (see below)
reads: "In my consultations, I aim to bring empathy, warmth, and
compassion. I allow enough time to listen and respond to the
individual circumstances of every patient I see."  That is correct,
and wow how important that is.

He was into Pca research, his speciality "minimally invasive
techniques for the treatment of urological conditions".  I pricked up
my ears. We get invaded enough in the exams; for treatment, less of
that sounds good. Then found he was into HIFU.

A few UK hospitals recently started trials of HIFU. Marc recommended
me for treatment with a  team at University College Hospital, London
who he also works with. For USA readers, this is a leading London
teaching hospital.

There's not a lot of evidence, we all agree. But with more than 100
HIFU procedures completed in trials they have the most UK experience.
And their HIFU team leader, Mark Emberton, was the first to use the
procedure in the UK. His advice was there for as long as I wanted to
ask him questions - and frank. No guarantees; there could be some
damage. So what's new? I have a close neighbour with PCA well
metastased  -now that's what you call damage.  UCHL use the Sonablate
500 system equipment (An alternative system uses 'Ablatherm' see the
HIFU links below).

How I weighed it all up:
PRO MY DECISION:
Going with an enthusiastic and - allowing that the procedures are very
new - an experienced team (see above) unlikely to be influenced by
blather. (Mark Emberton is also the Clinical Director of the Clinical
Effectiveness Unit, Royal College of Surgeons. I put another tick on
my sheet!)

Non-invasive treatment - for that relief, much thanks.

Treatment - one day. The alternative - seven weeks daily with external
beam radiation. HIFU is short of evidence; ebr is well established. So
the gambling odds are maybe lifted - but consider the savings in
weariness alone.

Recovery Times: Quicker than radiation or surgery.  

Side effects: HIFU must score high. I hated being cathetered for weeks
prior to a TURP. What I most fear from surgery, or radiation is
incontinence - of either exit -rectal even more unthinkable! My
understanding is that the accuracy of HIFU (despite one ng comment) is
such that the cancer can be destroyed while leaving adjacent tissue
and nerves untouched. No clearcut stats as usual on that,(though look
at the 'Rectal Wall' URL reference below) - but I'll go with the team.

Repeatable, if necessary. (I've seen this put as an argument against
the treatment -i.e. those involved wouldn't announce it can be
repeated if they knew it worked. This logic assumes presumably that
all treatments are perfect - which they are not anywhere in medicine.
It's nice to know that if our team doesn't win the first round of the
European Champions Cup (sorry, bewildered USA sports readers will have
to Google) they can get it right in the return match. (Further info
note for US sports fans: Arsenal, against the odds, will win the Euro
Champions Cup).

CON MY DECISION:
Side effects Long-term. Lack of stats means I may be the one to find
out! That's a risk. No new treatment can reliably answer this
question. At least, if it returns, they are able to try again.

Short-term I'm gonna be cathetered for a few weeks.Ugh but two weeks
is nowt in this business.

I'm told I may have to be treated from time to time to remove
resultant débris. Against all the other penile and transurethral
experiences I've had, I can live with that prospect (So long as nobody
kinks the bloody catheter, as somebody did TURPing me. Taking it out
was.. ….AAAARRRGGHH!)

Erectile D. That's the likeliest I understand of the possible side
effects. I'd very much like to do without it, but I think I heard
somebody mumble when I was being TRUS'd that the chances were 40%. (I
am going to check that. It is possible in all treatments - not sure of
the ratios). Readers might be thinking, "what's this old codger
worrying about that for?" Hmmm. But yes, it would now be easier to
accept - though I'm as always looking at the 60% in the ratio! Younger
guys might wish to look at this more closely.
.
Conclusion
When I've read all the websites, listened to skilled specialists, and
read all the informed, caring and conflicting comments I do find
somehow it spins round and around, and wearily I fall back on Omar
Khayyam:

        Myself when young did eagerly frequent
Doctor and Saint and heard great Argument
About it and about, but evermore
Came out by the same Door as in I went.

And then Hi Ho, HIFU. One day I discover I could take my chances on
what might be a simple, rather than a tiresome and difficult solution.
It might not be. But these odds, in good hands, seem worth a roll to
me.

My best wishes to all.


LINKS

Mark Emberton is Senior Lecturer in Oncological
Urology,(http://www.ucl.ac.uk/uroneph/review99/m_emberton.htm).

For a good introduction to HIFU, and all aspects of prostate
treatment, especially non-invasive, marc laniado is at
http://www.drmarc.co.uk/

You can read excellent detail about HIFU on:
http://www.prostate-cancer.org/education/novelthr/Chinn_TransrectalHIFU.html.
With plentiful pictures and diagrams. There you will read: "The
control and precision of HIFU allow the accomplished surgeon to
accurately target the tissue to be destroyed without injuring adjacent
tissue. HIFU destroys tissue by heat, rather than by cavitation or
mechanical shearing forces."  That sounds worth a roll of the dice to
me.

Partin tables:. (http://urology.jhu.edu/prostate/partintables.php).

For Pca patients in he Uk look at: http://www.ukhifu.co.uk/  a short
summary and other contacts for UK Pca  patients.

The manufacturer's site is
http://www.edap-hifu.com/eng/physicians/news/index.asp?offset=5

See a few patient HIFU experiences (v. difficult to find) at:
http://www.cancercompass.com/messageboard/message/single,1508,17.htm

A University of Calgary site is very useful -it is technical, and read
the heading Efficacy comparison and update for a  summary of outcomes.
And for me the Rectal Wall Monitoring" chapter was important.
http://www.hifu.ca/pdf/Rewcastle%202006%20HIFU%20Update.pdf 

END