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Medical Forum / Diseases and Disorders / Prostate BPH / November 2003

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PVP in the UK -- Please, EVERYONE!!

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Derry Argue - 17 Nov 2003 19:17 GMT
NICE is open to comments about PVP until the 25th November. Go
to http://www.nice.org.uk/article.asp?a=91073&c=76546&l=1.

Even if you have not had the procedure, please post why you have
chosen PVP. If you have had the procedure in the UK, please
post. If you have had the procedure outside of the UK, please
post your comments!This is important for others who have BPH.

Here is what I wrote: First, they ask who the poster represents,
so....

<<I represent myself! I am a BPH sufferer and have opted for KTP
Laser (PVP) as opposed to TURP because I have followed the
discussions and feed back from patients on the
sci.med.prostate.bph newsgroup on the Internet. I am a bachelor
farmer and do not have time for the long recovery normal after a
TURP, nor am I prepared to risk the side effects. Frankly, I pay
more attention to feedback from patients who have personal
experience of this procedure than the secondhand opinions of
urologists. As a result of these researches, my PVP is scheduled
for 3rd December by Mr Muir of King's College, London, to whom I
am referred by my local enlightened urologist, Mr Borgaonkar of
Raigmore Hospital, Inverness. I would be delighted to report
back on my progress but I fear that will be after 25th November.
I suggest you use the search engine (www.google.com, groups) to
research posts on the sci.med.prostate.bph newsgroup and do a
search on Laserscope and PVP to get first hand and unbiased
opinion from those who have had the procedure, i.e. the
patients. I understand that PVP's are now being done at a rate
of 1,000 a month world-wide so you should have no problem
finding patients who have had the procedure.>>

I am sure you guys can improve on that. This is such a cohesive
group I am confident that those of us fighting to get PVP here
in the UK will have your support.

Derry
admin - 20 Nov 2003 13:16 GMT
Greetings,

I have added my comments to the site.

> Even if you have not had the procedure, please post why you have
> chosen PVP. If you have had the procedure in the UK, please
> post. If you have had the procedure outside of the UK, please
> post your comments!This is important for others who have BPH.

"No organisation:

I have had problem with BPH for over 5 years, I was admitted to hospital
some time ago for a BNI/TUIP, I refused the operation because of its
inherent side effects.

I would now like the chance to have a PVP operation of which can be carried
out in the UK.

Unfortunately the consultant urologist will not refer me or allow me to have
one carried out, he is adamant that if I persist with this request he will
discharge me.

MY GP is unable to fund such an operation even though it is cheaper than a
comparable operation, however he has approached the local PCT to see if they
will fund it, but after some months, no reply yet.

I feel grieved that the operation is available but only if I pay privately
whilst other people are having this done on the NHS".
Derek F - 20 Nov 2003 21:20 GMT
> NICE is open to comments about PVP until the 25th November. Go
> to http://www.nice.org.uk/article.asp?a=91073&c=76546&l=1.
[quoted text clipped - 33 lines]
>
> Derry
I replied thus:-

I represent myself and all others with BPH who do not have faith in the
present Gold Standard TURP procedure.

I was diagnosed with BPH in 1994 and after a negative biopsy was advised to
have a TURP as a matter of urgency by Mr Fowler at Edinburgh's Western
General Hospital. The operation was scheduled for January 1995. In the six
months wait for the procedure I had time to read all the available
literature on the TURP and other newer procedures available in other
countries. I also had correspondence with H. Salcedo the American Urologist
and author of " The Prostate, Facts and Misconceptions"  Eventually I
decided not to have a TURP as it seemed to have to many contra indications

Over the years while I waited and searched for a better procedure my
prostate presumably continued to grow and my PSA at times went up to 9.0. I
also had another two negative biopsies. I say that my prostate presumably
continued to grow, as after turning down the TURP I was not given another
DRE or Ultrasound Scan only annual PSA tests at the Western General.
Eventually the Western decided that calling patients in for PSA testing was
a waste of consultant's time and they should now be done by GP's and
patients referred back for biopsies if the results deemed it necessary.

Over the last eighteen months I have been reading on the Internet and on
Prostate Newsgroups about Laserscope PVP. Over 99% of the hundreds of people
who reported on their Laserscope experience have been delighted by the
results and the speed of their recovery. The new "TURP" is now just Day
Surgery and less of a problem than many dental visits. It seems that many
patients with large prostates that would have needed open surgery can have
the Laserscope successfully.

I contacted Scottish Health Minister Malcolm Chisholm asking when the
procedure will be available in Edinburgh. He replied, "The Department of
Urology at the Western General Hospital has put forward a business case for
the introduction of such a service, and that a number of sources of funding
are being approached"

I would suggest that funding is not necessary as the procedure will be self
funding by reducing hospital stays for patients and it should certainly cut
the present six month waiting lists.
Derry Argue - 20 Nov 2003 22:43 GMT
> I replied thus:-
>
[quoted text clipped - 46 lines]
> for patients and it should certainly cut the present six
> month waiting lists.

Absolutely first class!!

We need MORE!

Hey, you in the USA, canada, etc. who have had a successful
PVPs, help out your Limey cousins, will you?<G>

Derry
Richard - 22 Nov 2003 14:36 GMT
I have today posted the following on the NICE website:

****************************************

Comments on provisional recommendations:
 
Do decision makers realise just how much BPH patients dislike TURP?

Your own document refers to 'relatively high morbidity from this
procedure'. The long recovery time also disrupts patients' lives. It
is not just an operation for inactive old men; many BPH patients still
work fulltime, and many retired men lead very active lives.

So, not surprisingly, patient interest in PVP is growing. The
newsgroup sci.med.prostate.bph is reporting many favourable results:
shorter operations, less bleeding, no postoperative saline washout,
shorter catheterisation, and faster recovery overall than with TURP. A
TURP-like cavity is created, so durability seems likely; and major
problems seem rare.

Barring late problems, I think you will see increasing patient demand
for PVP. To quote Gordon Muir of King's College Hospital: 'Although a
randomised trial against TURP would be the ideal to evaluate this new
technology,...[if] the apparent benefits of the Greenlight laser hold
out over the next 18 months I think it likely that patient pressure
will make such a trial difficult if not impossible to recruit to.'
(http://www.london-urology.co.uk/greenlight.html)

I expect to have a PVP soon.

Comments on the procedure:
 
The document's comments on the procedure seem oddly negative. For
example, it says, 'The Specialist Advisors noted the importance of
training in this procedure. They suggested that efficacy may be
related to the experience of the surgeon.' Surely that applies to any
procedure? Mr Muir comments on his website: 'One of the attractive
features of this laser is an intuitive technique for surgeons who are
already familiar with transurethral surgery'.

The document says complications include mild transient dysuria,
haematuria, retrograde (abnormal) ejaculation and soft bladder-neck
contracture, and that the specialist advisers 'listed potential
adverse events as inflammation, pain, urinary retention, retrograde
ejaculation, incontinence and infection'. However, most if not all
these features are at least as likely to occur with a traditional TURP
- in some cases markedly more so.

The advisers also 'noted that patients were likely to suffer
irritative bladder symptoms in the early postoperative period.' 'Mild
and transient' ones, probably, yes. But Mr Muir remarks: 'Post
operative bleeding *and discomfort* [my emphasis] has appeared less
than we would expect with standard TURP.'

*****************************************

I'd like to have said more in one or two places, but the length of
comments in each of the two sections ('provisional recommendations'
and 'procedure') is limited to 1200 characters.

Richard Slessor
gcrux - 22 Nov 2003 16:19 GMT
Here are my comments on the NICE KTP consultative document which I've just
sent to them - fairly standard stuff but at least it's another
contribution.  My impression is that NICE have already made up their mind
as the documant seems very negative to me.

'I represent myself as a patient/BPH sufferer.
My evidence is based on the experiences of many who have benefited from
the KTP procedure and others who have been subjected to TURP often with
dire/disappointing results.  I have read of their experiences in the 'bph'
newsgroup.  Other alternatives seem even less effective.

I favour KTP because:
    - it is less dangerous than TURP especially when the hospital involved is
number five in the national mortality league table.
    - it can be performed on larger prostates
    - it has less risk of undesirable side-effects such as impotence,
retro-ejaculation and incontinence
    - it can be done as day surgery, with shorter recovery time and much less
time in hospital, off-work and with restricted activity.
    Presumably this will save the NHS money as well.
    - the AUA and other results indicate a considerable success rate.'

> NICE is open to comments about PVP until the 25th November. Go
> to http://www.nice.org.uk/article.asp?a=91073&c=76546&l=1.

...............
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Chris - 24 Nov 2003 23:52 GMT
On 17 Nov 2003 19:17:41 GMT, Derry Argue
<derrynospam@adviegundogs.co.uk>
wrote:

> NICE is open to comments about PVP until the 25th November  

Just in time, my comments on the 2 sections:

If patients are informed about the safety and efficacy both of TURP
and of the KTP laser procedure, then they will probably come to the
same conclusion as me. Most patients now are only offered TURP, but
with the benefit of the internet I was able to compare the procedures
and opt for KTP.
I would hope clinicians are trained whatever the technique!

----------------------

A friend had TURP and needed a second procedure because of inadequate
prostate removal.In the same way, everything said about efficacy and
safety of KTP here can be applied also to TURP, with the addition of
the document's telling point about the ''relatively high morbidity''
of TURP.
It is unfortunate that some follow-up data on TURP could not be
included for comparison.... controlled studies are unlikely as
informed patients will probably not opt to be in the TURP group. With
a probable 11,000 procedures this year according to Laserscope,
results from the KTP technique should be plentiful. Considering when
the 80 Watt laser was introduced, commenting on "lack of long-term
data" is not constructive.
It is suggested in the pdf document that burns may occur with the high
energy used. But the green laser light is selectively absorbed by the
target material. I had a KTP operation lasting over 2 hours with a
prostate that, despite NHS urologists' opinion, turned out to be far
too large for TURP .... no evidence of burns.
Cost: a patient in their 50's like me would likely need a second TURP.
My KTP should last 40 years in my urologist's opinion.
This document over-emphasises the need for training, as though the
procedure were especially difficult. Having tried all techniques, my
urologist  does not find it so.

Although retired, living on a pension, the evidence led me to pay
thousands of pounds for KTP surgery. I am delighted with the result,
and hope it may soon be more readily available.
-------------------------

..Chris.
 
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