<snip>
Steve K ... it's the same here d/under re the docs.

I have been seeing both a Radiation Oncologist for the Clinical Trial,
plus a Urologist for the ensuing TURP.

Under the State operated Public Health System, we have (in pecking
order) a Consultant, a Registrar and a Resident.

When I started follow-up visits, I always saw the Consultant in each
field.

Now, as I'm a pain in the butt, like all others, the Patient files are
placed in a heap, in line with your appointment time and whoever gets
free first, grabs the top file.

The best I've had so far was a Pakistani Urology Registrar grab my
file, study it behind closed doors for 20 mins then call me in. With a
big smile and say, "Well Mr Xyz, how're you faring after your
Prostatectomy?"
I said "Were you reading MY file? I had a TURP, post HDRB!"
That sent him into a spin, so he had to go grab the Consultant to come
see me for a couple of minutes.

Last week another very young Rad Onc Registrar was looking to possibly
give me a Bone Scan instead of a Bone Mineral Density Test, due to
some 20% Spinal compression showing in a recent X-Ray.
He, too had to dash off to the Consultant and then returned, telling
me to go home!

And they let these guys do Surgery! kinda spooky aint it?

   
-Please reply to group as my email addr is fake!

-Regards CC

STEVE KRAMER

Thanks for usual much appreciated support.

You write: "And you're worrying about best wishes for us."

I think everybody reading and contributing on this ng understands it
must be outstanding for the support it provides. We are all going
through the same difficult mental processes some certainly more
troubling than my own. It is not difficult to feel the deepest
sympathy for our brothers contributing and to want them to know it.

" If they are mets, normally, you would have about two years. "

Thanks Steve. Note rider - ("and your treatment is unlike any
other.."). But I suspect it now won't be relevant. And this is the
kind of simple knowledge I need at this time. (while, yes, knowing it
might be three months or maybe three years). What I have made it clear
to my doctors is that I am quite fatalistic -especially at my age -
about what may happen. I don't think they believe me. What makes me
break up, and goes deep, is the feeling that I can never get
prognostication from where I am - with all the ifs and buts. What I
have been met with more than once is 'I'm not in the business of
forecasting.'  So you learn not to ask. And the consultants - all over
the NHS can get on with their overburdened waiting lists and meeting
politically-set sound-good targets which by medical standards are
often spurious. I feel sympathy for them. They hate it. Patients and
consultants alike are trapped together in the bureaucratic web.

Steve's later comment: "What's scary is, while watching what's going
on worldwide with national health care, we still have seemingly
otherwise intelligent politicians trying to force it down our
throats."

As to the future? We now have a man over here who in ten years of
power in charge of the public's purse strings was known for underhand,
hidden introductions of 'stealth' taxes, and has been described, from
his own side, as a control freak with Stalinist tendencies. He's now
the Prime Minister. He's had his teeth capped, learned to smile on
camera, gets himself always on camera (it backfired when he turned up
for a world Rugby cup which England lost and of course, no smile
allowed, could look only his old, glowering self), and has
successfully reinvented himself as a caring, open, loving politician.
Expletive deleted. Or rather, Steve, plûs ça change plûs it's gonna
get even worse. (And when you're in the jungle, look out for that cat
in the tree with the inviting smile. It could be a leopard which has
found a pot of brown paint to cover its spots. There are millions born
every minute. )

CLARENCE CROW.

PLEASE!.. everybody who cares about health and how it should be run
read Clarence's wonderful post. No more succinct description of the
NHS cock-up system could be found. In a nutshell especially:

"Now, as I'm a pain in the butt, like all others, the Patient files
are placed in a heap, in line with your appointment time and whoever
gets free first, grabs the top file."

Exactly!  But Clarence then goes on to describe his extraordinary
experiences with the docs who grabbed his file.  I must admit it gave
me some wonderful out-loud laughing. It would make a great soap, or
old-style French farce. Hilarious. One has to laugh. But it's black
humour. Clarence has severe problems and has had for years. In that
case his experiences are nothing less than grotesque and disgraceful.
Especially Clarence's last one when the solution to having the wrong
consultation was, after some dashing about by his doc, to be told to
'go home'. Only a minor problem after all,  20% spinal compression.

Almost every word of Clarence's report chimes with my own. I have
posted some of these experiences before. Clarence, I think the worst
of it, is the feeling when you enter the Clinic that you *are* going
to be messed about in this way. Which makes it worse when you are. I
think this is what had built up when I had my recent bout with the
system, and made the comment aimed at me difficult to take. Clarence
has had it much worse.

Clarence: a doc told me on this last visit if you want to see your
proper consultant, you tell the person getting out your file, who
marks it for him.??

ALAN MEYER

Many thanks. You note:

"I suspect that a PSA of 5.0 could be caused by metastases that are
too small to show up in scanning.  There might be something completely
contained in the seminal vesicles, but it might also be in bone, lung,
or who knows where, in which case more HIFU wouldn't help."

I understood this - and it's why I am getting another scan due in
three months to see if anything has grown. As I understand it if it's
in the seminal vesicle it can be a subject for HIFU. Otherwise I shall
obviously have to start concentrating on alternative therapies such as
you suggest and you have greatly helped in discussing before.

Thanks too for the comments on my wife. (Apologies to the group - this
is OT, I'll keep off it in future. Skip on) You have helped me with
this before too. I go round and round. But I've got to the point I
have to experience her being home with me, so that I am not thinking
about it every moment of the day -and at night. I see her in my mind
sitting there desperately wondering when I will appear and support her
in her hour of need. If it works taking her home, we'll both be happy.
If not, I'll understand better what is beyond me, and not a help to
her. I have visited Alzheimer meetings locally where the
impracticality is always confirmed. We'll see. If she gets
significantly worse mentally at least then I may have the comfort that
she really doesn't understand she's in an environment alien to her.
Thanks.

ROSBIF

Hello again.

You wrote:

"I could be wrong about this, but I understood only the technician
would be able to interpret the detail on the MRI, the surgeon doing no
better than reading the report - though understandably you're at home
with Emberton and there will always be the feeling of being palmed off
if you don't see him. A victim of his own success maybe?"

Very good points and very fair. There is no question the treatment I
have had is outstanding. Mark Emberton I have always had the highest
regard for - especially compared with other doctors I may never have
seen before. And so, yes, the victim as you say of his own success. I
am sure he is making a clear mark in the history of development of
successful cancer treatments. I hope I have made this clear in all my
posts, including my last summary. The fact that an MRI is planned for
three months, when, metastases might begin to show up, is further
evidence that the treatment has never been lacking. My complaints -
exposed painfully in Clarence's post - have been only in patient-
handling in a hectic overloaded bureaucratic system.

I assume your first point too about the technician  is correct. In
which case I must confirm that I have never understood this before. If
I had it would certainly have made me somewhat happier having it read
by an alternative doc. I say "somewhat" because does the MRI leave no
room for some interpretation?  If so, might a surgeon who is a
specialist in a tiny segment of cancer treatment, not see something in
the MRI report than one who knows little about it?  That's a question.
I don't know. It is because the specialisation is not just in
"cancer", but in HIFU, where I believe nobody understands more than
Emberton,  that I feel 'palmed off' when I can't see him when I've got
questions.

But I've never been palmed off with the final treatment, and for that
I know I shall be always thankful to the UCHL team, not least on
behalf of my wife, and kids.  And it's why Rosbif, I'm not even
worried about the snitches, long may they prosper. Even if the whisper
gets through to the Boss, I'm sure the hit won't be on me, directing
the next ultra sound of Beethoven's Seventh or whatever they use up
the wrong channel. 'H'm we've never seen this M.O. before,' muses
Columbo. Boss Soprano was delighted with himself when he got Uncle to
take the rap. And there are always radiologists lurking out there.

My best wishes to all you great guys.

MikeHi