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Medical Forum / Diseases and Disorders / Prostate Cancer / January 2006

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About to get treatment - probably.

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rosbif - 26 Jan 2006 10:50 GMT
Greetings to all

In April 2004, with my late father's PCa in mind, I saw a urologist re
a creeping but not too serious peeing difficulty. PSA test was found
to be 5.5 and I had a biopsy which proved "inconclusive" in one core
of 10. I was urged to go for a second biopsy which I had about 2 weeks
later and this showed what my man described as 'small quantity of
non-aggressive tumour in one core - no figures, no gleason score were
offered and, at that stage, I was content to know no
more...'non-aggressive' was comforting enough for me.    At a further
consultation the 3 courses of action outlined to me were surgery,
radiotherapy (good chance of 'complete cure' he said) or active
surveillance (AS?) - periodic PSA testing and maybe follow-up biopsy.
Being always an ostrich about these things, I was content at the time
to opt for AS and did so.
Not far short of 2 years later, now 61 yrs, I've had interim PSAs of
4.8 4.6 5.5 and most recently 6 (two months ago).  That prompted a
biopsy three weeks ago showing 3 cores out of 10 with gleason 3+4 -
apparently 5%, 5% and 30% by volume. I'm about to consult with a
surgeon and oncologist to discuss the next move - probably treatment.

At this stage it will be obvious, I'm sure, that I'm under-educated,
and from the few posts I've read here over the last week I can see
that the chances of getting a complete low-down from the medical
professionals is slim given the time they'll have to talk to me.  Also
one question answered will surely beget 2 further questions so at this
stage I wonder if people here could point me in the direction of some
sources on the internet acknowledged by consensus as definitive and
reliable.  Over the last 18 months quite a bit of adverse publicity in
the UK suggesting a tendency for the establishment to invoke treatment
too impatiently has persuaded me to allow the ostrich to think for me
but now I need to remove my head and get up to speed. I have quite a
bit of free time over the next couple of weeks and will obviously be
focusing sharply.  

comments much appreciated.
Leonard Evens - 26 Jan 2006 15:25 GMT
> Greetings to all
>
[quoted text clipped - 32 lines]
>
> comments much appreciated.

I recomend two books.  One is Patrick Walsh's Guide to Surviving
Prostate Cancer and the other is Peter Scardino's Prostate Book.  The
latter is a bit more up-to-date and easier to read.   A good web site is
www.phoenix5.org.

I would recommend against relying too strongly on the internet.  It is
easy to get misled by particular points of view and come away without a
balanced idea of what is what.  In the end you will have to be guided by
what your physicians tell you.  If after some investigation you find
your doctors's explanations inadequate, you should change doctors.

Your history is a bit inconsistent.   The PSAs don't seem to have
changed all that much during the last couple of years and seems quite
consistent with benign prostatic hypertropy (BPH) which is relatively
common in men as they age.  It is also consistent with  your difficulty
urinating.  On the other hand the change from "non-aggressive" to
Gleason 7=3+4 seems rather dramatic.   One possible explanation is that
the previous biopsy just missed most of the prostate cancer by chance.
Perhaps the newer biopsy sampled better.

In any case, I think that even many skeptics about aggressive treatment
for prostate cancer would take a Gleason 7 seriously, particularly for a
man your age.   It is at the top end of what is is considered moderate.
 The likelihood of developing advanced metastatic cancer in your
lifetime is too high, I think, for a reasonable man to chance it, and
the prospects for a cure relatively good.  I speak personally because my
cancer was also 7=3+4 with PSA values similar to yours.  In my opinion,
"active surveillance" is no longer a reasonable choice for you.   In the
US, most urologists would suggest surgery, but radiation done by the
most modern methods may be just as good an option.  The important thing
is that radiation doses have to be quite high to be effective, risking
damage to surrounding tissues if not focused properly.  Either treatment
may have side effects such as urinary problems, incontinence, impotence,
or bowel problems.  To avoid impotence a surgeon should be skilled in
the so-called nerve sparing technique pioneered by Patric Walsh.   But
don't be deterred too much by the possiblity of side effects.  Many men
avoid them entirely, and the younger you are the better the chance you
will.  Also, side effects, including imptence can be treated.  In my
opinion, one treatment you should not consider at present is the use of
hormone suppresing drugs, except possibly as a temporary adjunct to
radiation.   They are more appropriate for treating advanced metastatic
prostate cancer, and despite some claims you may find to the contrary on
the web or elsewhere the great majority of experts don't believe they
can cure early prostate cancer like yours.

You do have time to educate yourself and make your decisions, so don't
panic.  Prostate cancer, even when aggressive, is slow growing compared
to most other cancers. But act within months rather than years.

Good luck.
rosbif - 26 Jan 2006 16:56 GMT
>I recomend two books.  One is Patrick Walsh's Guide to Surviving
>Prostate Cancer and the other is Peter Scardino's Prostate Book.  The
>latter is a bit more up-to-date and easier to read.   A good web site is
>www.phoenix5.org.

Ok, on the amazon.uk site I see 3 Scardino books, but I'm assuming you
mean this one

http://www.amazon.co.uk/exec/obidos/ASIN/1583332200/qid=1138293963/sr=1-8/ref=sr
_1_1_8/026-4902782-6870002


>I would recommend against relying too strongly on the internet.  It is
>easy to get misled by particular points of view and come away without a
>balanced idea of what is what.  In the end you will have to be guided by
>what your physicians tell you.  If after some investigation you find
>your doctors's explanations inadequate, you should change doctors.

I think in the uk we're a bit reticent about complaining, and there
are occasions when I feel it's my own penny which hasn't quite dropped
rather than a poor explanation.  Still, there's obvious virtue in
becoming more exacting.

>Your history is a bit inconsistent.   The PSAs don't seem to have
>changed all that much during the last couple of years and seems quite
[quoted text clipped - 4 lines]
>the previous biopsy just missed most of the prostate cancer by chance.
>Perhaps the newer biopsy sampled better.

Yes, that must surely be it.  In fact I moved house and 120 miles east
to a new center soon after the first pair of biopsies so this last has
been under different auspices.  I'm interested in the probability
aspect of this - does anyone have a ref for the reliability of biopsy
as a sampling procedure?  10 cores seems to me like precious few,
though I'm not voting for the discomfort of more.

>In any case, I think that even many skeptics about aggressive treatment
>for prostate cancer would take a Gleason 7 seriously, particularly for a
[quoted text clipped - 26 lines]
>
>Good luck.

thanks for all this.  I shall be reading and enquiring....no doubt
more questions later if anyone has the patience for them.
RonL - 26 Jan 2006 18:56 GMT
>>I recomend two books.  One is Patrick Walsh's Guide to Surviving
>>Prostate Cancer and the other is Peter Scardino's Prostate Book.  The
[quoted text clipped - 5 lines]
>
> http://www.amazon.co.uk/exec/obidos/ASIN/1583332200/qid=1138293963/sr=1-8/ref=sr
_1_1_8/026-4902782-6870002

That's the latest, and I think it's excellent.  The Walsh book, which I also
have, describes the RRP procedure in perhaps greater detail, but Scardino is
published later, as Leonard says, and I agree it's a bit smoother to read.
Both are very good resources for me.

Good luck and improved health to you.  -RonL
rosbif - 26 Jan 2006 20:22 GMT
>> http://www.amazon.co.uk/exec/obidos/ASIN/1583332200/qid=1138293963/sr=1-8/ref=sr
_1_1_8/026-4902782-6870002

>
[quoted text clipped - 4 lines]
>
>Good luck and improved health to you.  -RonL

appreciated RonL - and to you also.
Leonard Evens - 26 Jan 2006 21:11 GMT
>>I recomend two books.  One is Patrick Walsh's Guide to Surviving
>>Prostate Cancer and the other is Peter Scardino's Prostate Book.  The
[quoted text clipped - 5 lines]
>
> http://www.amazon.co.uk/exec/obidos/ASIN/1583332200/qid=1138293963/sr=1-8/ref=sr
_1_1_8/026-4902782-6870002

Yes.  That is the one.

>>I would recommend against relying too strongly on the internet.  It is
>>easy to get misled by particular points of view and come away without a
[quoted text clipped - 22 lines]
> as a sampling procedure?  10 cores seems to me like precious few,
> though I'm not voting for the discomfort of more.

12 is a common choice, but some go as high as 18.  But, it is no only a
matter of the number of probes.  Where they are placed can also be
important.

>>In any case, I think that even many skeptics about aggressive treatment
>>for prostate cancer would take a Gleason 7 seriously, particularly for a
[quoted text clipped - 29 lines]
> thanks for all this.  I shall be reading and enquiring....no doubt
> more questions later if anyone has the patience for them.
Steve Jordan - 26 Jan 2006 16:47 GMT
On January 26, rosbif inquired, in pertinent part:

(snip)
> .... I wonder if people here could point me in the direction of some
> sources on the internet acknowledged by consensus as definitive and
> reliable.  
>  
Very little definite information has been supplied beyond the Gleason
score. Therefore, any attempt to advise rosbif about treatment would be
doing him a disservice.

A direct answer to his question is: for comprehensive and objective
information online, see the website of the Prostate Cancer Research
Institute at: http://prostate-cancer.org/index.html

A good place to start would be the "Resources" link, then on the page
that appears, the "Newly Diagnosed" link.

Good luck.

Steve J

"We must tailor the treatment to the nature of the disease. We must
listen to the biology."
-- Stephen B. Strum, MD
rosbif - 26 Jan 2006 17:06 GMT
>On January 26, rosbif inquired, in pertinent part:
>
[quoted text clipped - 13 lines]
>A good place to start would be the "Resources" link, then on the page
>that appears, the "Newly Diagnosed" link.

Ok, thanks for that. I take 'Newly Diagnosed' to mean not yet treated.
That's me.

>Good luck.
>
[quoted text clipped - 3 lines]
>listen to the biology."
>-- Stephen B. Strum, MD
Mary Fisher - 26 Jan 2006 16:48 GMT
...

> At this stage it will be obvious, I'm sure, that I'm under-educated,
> and from the few posts I've read here over the last week I can see
> that the chances of getting a complete low-down from the medical
> professionals is slim given the time they'll have to talk to me.

That wasn't Spouse's experience this morning, the only constraint was that
he didn't think to ask some questions. He had everything explained to him at
such length that he's forgotten a lot. It's your right to have all your
questions answered. They always have been for me.

> Over the last 18 months quite a bit of adverse publicity in
> the UK suggesting a tendency for the establishment to invoke treatment
> too impatiently

I haven't seen such publicity - but we don't get newspapers and have no tv.

The medics he saw this morning weren't in a hurry at all - although they did
say that a PSA of 15 was high for a man of his age (66) and that if it
suddenly soared they'd call him for treatment sooner rather than later.

I suspect that as with all conditions and in all countries the treatment at
all levels is patchy. His experiences this morning have been very different
from those ten years ago in another hospital - but ten years is a long time
in medicine. He has no complaints, he's confident that he's in good hands
and that things are progressing. I just wish he'd taken notice of me and
sought advice before now - but that's men, innit!

We're in Leeds, Yorkshire, by the way.

Mary
rosbif - 26 Jan 2006 17:04 GMT
>...
>
[quoted text clipped - 5 lines]
>That wasn't Spouse's experience this morning, the only constraint was that
>he didn't think to ask some questions.

Sure, it's worth keeping a list isn't it?  But I find too that as I
ask, so the answer opens up more queries and I start to lose track.

> He had everything explained to him at
>such length that he's forgotten a lot. It's your right to have all your
[quoted text clipped - 5 lines]
>
>I haven't seen such publicity - but we don't get newspapers and have no tv.

A deliberate effort to eschew the modern world?  Admirable!  There has
been a fair bit of it actually - even an epidemic I would say up until
a year or so ago.  Snag is, that journalism like so much is driven by
sensationalism; hard to give it a credibility rating.

>The medics he saw this morning weren't in a hurry at all - although they did
>say that a PSA of 15 was high for a man of his age (66) and that if it
>suddenly soared they'd call him for treatment sooner rather than later.

He's been biopsied?  I'm new here.

>I suspect that as with all conditions and in all countries the treatment at
>all levels is patchy. His experiences this morning have been very different
>from those ten years ago in another hospital - but ten years is a long time
>in medicine. He has no complaints, he's confident that he's in good hands
>and that things are progressing. I just wish he'd taken notice of me and
>sought advice before now - but that's men, innit!

It would seem so!  Best of luck - no doubt you'll be posting again.

>We're in Leeds, Yorkshire, by the way.
>
>Mary
Mary Fisher - 26 Jan 2006 22:06 GMT
>>> Over the last 18 months quite a bit of adverse publicity in
>>> the UK suggesting a tendency for the establishment to invoke treatment
[quoted text clipped - 4 lines]
>
> A deliberate effort to eschew the modern world?

Oh not at all, there are two reasons.

The first is time, we simply don't have the time to spend on ink and
shadows. We used to buy newspapers, many years ago, then realised that they
were piling up in heaps, unopened. There's nothing more stale than
yesterday's news. We realised that we hadn't watched our television (we'd
had it for three years) for months when the licence fee was due. The last
time we saw it was at the opening - or closing (can't remember) ceremony of
the Alabama Olympics. No idea when that was.

The second, and more important (and which you hinted at) is that we simply
don't believe what is broadcast in papers and tv.We've been involved with
our own stories too often. They've been distorted, selectively edited,
embellished and the rest. When we've been on tv the programmes have been
driven by what the team wanted, we were simply lumps of flesh. Knowing how
tv programmes are made, even the most reputable nature and wildlife
programmes which you'd think couldn't be faked, is a real eye-opener.

I'm sure that there are some interesting and even reliable programmes but
you'd have to sit through a lot of dross to find them - and how would you
know?

It's a sham.

So is radio, by the way, although we do have wall to wall Radio 4 on all the
time. It provides an entertaining background to whatever we're doing but I
certainly don't believe everything I hear even on that most respected of
national stations. Sometimes you hear a politician making a speech or being
interviewed. . What's reported, even immediately afterwards, is not what
s/he said. It's distorted towards the sensational.

And opinions are made of such things. Even national characters ...

End of rant.

> Admirable!  There has
> been a fair bit of it actually - even an epidemic I would say up until
> a year or so ago.  Snag is, that journalism like so much is driven by
> sensationalism; hard to give it a credibility rating.

I couldn't have said it better.

>>The medics he saw this morning weren't in a hurry at all - although they
>>did
>>say that a PSA of 15 was high for a man of his age (66) and that if it
>>suddenly soared they'd call him for treatment sooner rather than later.
>
> He's been biopsied?
Not for ten years, which is another story.

> I'm new here.

So amI.

Thanks for reading and replying,

Mary
I.P. Freely - 26 Jan 2006 17:44 GMT
"Mary Fisher" wrote -- and Rosbit should learn from it --
>  [My husband] had everything explained to him at such length that he's
> forgotten a lot.

That's why my questions were on a clipboard  and spaced widely with room to
write down all the answers -- and why my wife was there with an extra set of
ears. (A clipboard or a loose-leaf binder is far more practical than a
fixed-leaf notebook because the questions come from your computer printer.)

> It's your right to have all your questions answered.

> the only constraint was that he didn't think to ask some questions.

That's precisely why we recommend homework ... i.e., reading books and
websites and forums on one's own. THAT'S where many of the questions
originate.

> The medics say that a PSA of 15 was high for a man of his age (66) and
> that if it suddenly soared they'd call him for treatment sooner rather
> than later.

> he's confident that he's in good hands

Are those two statements compatible, guys? Is there any reason to wait two
more weeks for tx with a double-digit PSA and a proven cancer (I forget his
Gleason grade)?

I.P.
Mary Fisher - 26 Jan 2006 21:12 GMT
> "Mary Fisher" wrote -- and Rosbit should learn from it --
>>  [My husband] had everything explained to him at such length that he's
[quoted text clipped - 5 lines]
> than a fixed-leaf notebook because the questions come from your computer
> printer.)

Indeed. I didn't want to push him on this first occasion because he easily
feels undermined. Next time though ... softly softly ... :-)

And I couldn't accompany him because car parking is next to impossible so he
went on the scooter. One of my feet is very vulnerable because of recent
surgery so two wheeled transport is not advised.

But I did tell him that I'd go with him next time, there wouldn't be any
problems.

>> It's your right to have all your questions answered.
>
[quoted text clipped - 3 lines]
> websites and forums on one's own. THAT'S where many of the questions
> originate.

I know that, I'm doing as much homework as I can, and I did tell him what
questions to ask but he didn't remember them all. One problem was that he
was kept waiting around for ages filling his bladder for the scan and then
the flow test. He was told to empty it between those procedures. Situations
like that aren't good aids to memory..

>> The medics say that a PSA of 15 was high for a man of his age (66) and
>> that if it suddenly soared they'd call him for treatment sooner rather
[quoted text clipped - 5 lines]
> more weeks for tx with a double-digit PSA and a proven cancer (I forget
> his Gleason grade)?

er -what proven cancer? I've never mentioned a Gleason grade. Perhaps you're
confusing English Spouse with English Rosbif?

Or perhaps you're thinking of MY cancer, which I have mentioned. It's not
catching ...

:-)

Mary

> I.P.
 
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