18 June 2006

Hi all
Continued report post HIFU operation.
T2b NO MO
Gleason 4+5

HIFU operation was April 10 . Saw my surgeon, John Calleary of Univ.
Coll. Hospital London  June 7th. Can now bring you up to date with two
months' experiences post-op.

RECAPPING:

Detailed explanatory and many links see my post (as "Mike") 15th March
Hi Ho I'm for HIFU.

Links to the specialists with whom I've had personal experience:
For a description and practitioner of HIFU treatment and all things
prostate:  http://www.drmarc.co.uk/.  He specialises in non-invasive
techniques, is involved with the HIFU teams and after earlier
treatment referred me for the HIFU op. I've found him very caring.

Detailed description and diagrams of HIFU on:
http://www.prostate-cancer.org/education/novelthr/Chinn_TransrectalHIFU.html

Leader of team which operated: Mark Emberton, Senior Lecturer in
Oncological Urology at Univ. Coll. Hosp. London
http://www.ucl.ac.uk/uroneph/review99/m_emberton.htm. It's the team
with most experience in the UK of the Sonablate 500 version of HIFU.

Previously reported: The temporary catheter came out 26th April.  I
had no dramas the time the catheter was permanent. The "flexi-valve"
catheter (turn tap on/off - no bag) was excellent. You get the same
feeling "you want to go" as though you didn't have a catheter. You
just go to the loo and turn the tap on. No leaks.

Two months' POST -OP experiences:

Preamble (skip it if you're in a hurry. But for me this anecdote was
reassuring about the effects of the op.)

They say it's an ill wind that blows nobody any good, and the one that
nearly blew me off course had its positive side. I've noted before
that the high skills of the medical teams at UCH are in inverse ratio
to the admin.  I was itching to see my surgeon nearly two months after
the op. As an NHS patient it was my first chance to ask  questions. I
arrived after a longish train journey (which incidentally also costs
more than a few bob in the high-cost low-quality Brit railway system
which everybody is forced to put up with) to be told the clinic had
been cancelled. ('Oh, dear. Didn't you get the cancellation letter?'
'When did you send it out,' I asked. 'Two weeks ago,' I was told .
'Ah,' I said, 'your system takes six weeks to send out a letter'.).
Although I think I conducted the ensuing conversation in a reasonably
low tone of voice I apparently managed to convey the clear impression
that I would, if necessary, sleep in the hospital, but I wanted to see
a (preferably 'my') surgeon before I left. I had a lot of questions
and for my wife and family and I this was 'Der Tag', when we got some
answers. Besides, as I also explained, I had urge incontinence (see
further below) and while I could keep a bottle in a car, by train I
had to measure the sprinting distance between possible train/station
loos (UK-ese for 'toilets' -which I suppose is USA for 'bathrooms').
(Shouldn't there be a bath in a bathroom??) (I won the race).

The positive side of all this was there was another patient there
who'd also come a long way for nothing. He'd not only had the HIFU
too, but on the same day as me. So while waiting for something to
happen, we had plenty of time to exchange experiences. His was not an
exact comparison with my case. He had had radiation earlier and his
HIFU op. was sorting out some post-radiation problems. Nevertheless,
as he was a same-day-as-me patient, what he told me was reassuring. We
were both suffering almost exactly the same series of side effects.
In other words, the odds were that they were indeed short-term, and
not, as I feared might be possible, long-term.

Side Effects

The side effects are mostly associated with the need to clear the
prostate 'debris' left by the HIFU blasting of the prostate bit we
don't want.

The reassurance I felt from my conversation was generally confirmed by
John Calleary, my surgeon. Poor chap was pulled out of a conference.
He must have been delighted. Wasn't his fault, and I greatly
appreciated his effort. Especially he's a very laid-back quietly
spoken Irish surgeon (from UCH's sister college over there) and got
down to answering my questions without any fuss, and in great detail.

'TURP' question. HIFU can be used for non-malignant uses -such as a
TURP equivalent (cutting a bit of a benign prostate to clear it for
peeing). I had also needed this aspect of the op. The HIFU procedure
in fact had done it as a matter of course.

Urge Incontinence: This was the side-effect I most wanted to hear was
also that of my fellow patient - and from John, i.e. it is short-term.
It means getting only about two/three minutes between the 'urge' to
pee -and look, it's going. This has been a feature only in the past
two or three weeks. It can be dealt with. First, I always pee before I
go out. If I'm walking I work out where are the pubs or shop toilets
-and I wear a pad against emergencies. In the car I always take a
bottle. In fact I haven't yet been caught out when away from home. So
it is not an effect, even short-term, of as much concern as I might
have thought.

Cathetering Pain. We are shown how to self-catheter if the debris
causes a temporary block. Happy not to do it, but it's no big problem.
I've had to do it about half a dozen times. The last few inches of
self cathetering however I have to really shove hard, and it gives me
sharp pains around the nether regions. This happens to me -not the
other bloke. So it appears not to be typical.

I'm told the cause is partly the prostate still being swollen,
pressing down to narrow the neck where the catheter enters the
bladder. Plus, I have picked up a bladder infection. I'm taking
antibiotics for it - and haven't had to self-catheter for a week or
more.

Urine stream  Has generally been fairly weak and sometimes spasmodic.
This worried me - and led to my 'Turp' question, above. But after
about ten days antibiotics I notice (cheers, please) the stream is
getting stronger and even sometimes seems good and normal. Praise be!
when all you want out of  life is to be able to have a good pee!!
Might be coming.

Impotence?  We all know that the erection nerves are very close to the
prostate. John drew me a diagram. One advantage of being a grumpy old
man is that the one thing you realise you don't need to keep
complaining about, is not getting enough.  Even so, this was my other
big worry. Just to know it's there. Don't want to climb Everest any
more but it's nice to know it's there, should I want to venture a few
steps up it.  I know this will be a big factor for most guys -who
haven't yet got to the grumpy stage. I need to wait until I'm beyond
side-effects time. Even so, at this stage I can say I don't believe I
am impotent, and Cialis I am advised can also help.

Frequency & Extreme fatigue: I associate the two. I can go anything
from four to six times at night. So my sleep is shot. My memory has
suffered -and my physical abilities. Sometimes can't drag myself
around. Some will be due to post-op (four hours) effect; but much must
be due to little sleep. Stop press: - I think I'm getting down to
four, with six as an exception.

Regular Pain:  I get regular pain in my side and back. But I've had
back pain for years -although the side pain at waist level, is new. I
think Partin gives more than a 90% probability I've
micro-metastasised.

Remember, and be aware,I may not be typical.  I  was the first
"high-risk" Pca patient  to be done with HIFU.  My pre-op hospital
report read: "He has been made aware that he has extremely high-risk
of having extra- prostatic disease and there is a 50% chance of
long-term progression". Mark Emberton describes the op. as "salvage".
I'm content to date.

I'll keep in touch.

My very best wishes to all.
MikeHi