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Medical Forum / Diseases and Disorders / Prostate Cancer / May 2004

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Effects of prostate cancer treatment downplayed

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c palmer - 12 May 2004 00:06 GMT
this was on tonight's news.  i know this will not come as a surprise to
anyone in the newsgroup.

~ curtis
_______________________

Dennis Gibson believes that when he was treated for prostate cancer his
doctor did not give him an honest assessment of the risk of side
effects.
"I can be brave. I can grit my teeth. I would have liked to not be
surprised," says Gibson.
Stan Klein is also a prostate-cancer survivor, who runs support groups
for others. He says side effects, such as impotence and urinary
incontinence, are far more common than most doctors admit. A new study
of 1,000 men conducted over eight years backs this assessment up.
"It a terrible thing to watch a man come into a support group with a
beautiful young lady by his side and tears in his eyes because he finds
out that he is impotent and he cannot go to functions because he is
incontinent," says Klein.
According to Dr. Simon Hall, chairman of the urology department at Mt.
Sinai Medical Center in New York, "Part of it is that the side effects
are not fully explained to a patient in detail."   
Another problem is the ongoing debate about whether surgery is better
than radiation treatment. "I think certainly - traditionally -- there
has been a lot of competition between surgeons and radiation oncologists
between who's treatment is better," says Hall.  And when asked if
doctors minimize the side effects as part of the sales pitch, Hall says
"yes."
Another problem is that not all doctors are equally skilled.
"There is a huge difference between surgeons," adds Hall. When
questioned whether that means you could have completely different
outcomes from two different doctors at the same hospital, Hall replies,
"Yes. ... I think that certainly this is one of the issues, that if we
look at the Medicare database and look at those patients, that ...
impotence is almost 90 percent of patients."
That number may be slightly high, he says, but there is no question that
prostate-cancer treatment is taking a bigger toll than many men realize.
© 2004 MSNBC Interactive

knowledge is power - growing old is mandatory - growing wise is optional    
"Many more men die with prostate cancer than of it. Growing old is
invariably fatal. Prostate cancer is only sometimes so."
Alan Meyer - 12 May 2004 01:26 GMT
> this was on tonight's news.  i know this will not come as a surprise to
> anyone in the newsgroup.
...
> Stan Klein is also a prostate-cancer survivor, who runs support groups
> for others. He says side effects, such as impotence and urinary
> incontinence, are far more common than most doctors admit.
...

I just did some lookups on Pubmed and found some interesting
data.

The conclusions of these studies were worse than I expected.  My
urologist told me, for example, that impotence occurred in about
30% of men after modern RP.  I think Stan Klein may be right.

---------
From a French study of 205 RP patients at one year after surgery.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstra
ct&list_uids=14644116


Results:
  85% had PSA < 0.2
  65.8% were continent
  32.7% still had erections

---------
A Belgian study of 46 patients, 18 months or more after
"unilateral nerve sparing prostate surgery".

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstra
ct&list_uids=12664068


Results:
  30.4% regained "full potency"
  84.8% "reported the ability to achieve orgasm"

It wasn't clear to me whether the 84.8% was among the
whole group, or only among the 30.4%.

"Age is the single most important factor in the recuperation of
potency after unilateral nerve sparing surgery."

---------
A study of 372 men in the U.S., one year after RP.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstra
ct&list_uids=14713791


Results:
   63% returned to baseline continence
   20% returned to baseline potency

Age was a significant factor, but other factors included
household income (!) and general health.

---------
A study of 417 men in the U.S., up to 24 months after radiation
or RP.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstra
ct&list_uids=14581420


Results:

   "Urinary incontinence increased sharply after RP, while bowel
   problems and urinary irritation/obstruction rose after EBRT
   and BT. Sexual dysfunction increased in all patients,
   particularly after radical prostatectomy, and nerve-sparing
   surgical technique had little apparent benefit."  [! - Alan]

Alan
Leonard Evens - 12 May 2004 03:28 GMT
>>this was on tonight's news.  i know this will not come as a surprise to
>>anyone in the newsgroup.
[quoted text clipped - 67 lines]
>
> Alan

Statistics like this are meaningless.  Permanent impotence following RP
is highly dependent on factos such as age and the skill of the surgeon.
  Younger men are less likely to end up impotent.  A man in his 50s who
has nerver sparing surgery done by a skilled surgeon has a very good
chance of avoiding impotence.  On the other hand, even Patrick Walsh
would have a hard time preserving potency in a man over 70.
Alan Meyer - 12 May 2004 19:04 GMT
> ...
> Statistics like this are meaningless.  Permanent impotence following RP
> is highly dependent on factos such as age and the skill of the surgeon.
> ...

Perhaps "meaningless" is too strong a word.

All we have on Pubmed are the abstracts and not the
full reports.  In many cases the researchers did break
down results into age categories.  Skill of the surgeon
is tougher.

Nevertheless, what I think the statistics do show is
that overall picture is bleaker than many doctors
indicate.  Some of us can escape the averages by
finding top doctors and optimal conditions for our
treatment - whether surgery or radiation.  But by the
very definition of "average" most of us do not
escape.

Psychologically, I think a patient may be best off if
he prepares himself for a rocky recovery.  S--t does
happen, and it happens a lot.

   Alan
Beverley - 13 May 2004 04:19 GMT
My sediments exactly. I keep saying there is Chocolate or Vanilla but in
truth they are all Rocky Roads.
Bev

> > ...
> > Statistics like this are meaningless.  Permanent impotence
[quoted text clipped - 23 lines]
>
>     Alan
John Loomis - 12 May 2004 04:32 GMT
I have to say, that the day the catheter was removed, I only pissed myself
once.  (and not much) It took 2 years for erectile funcion....
So, after Radical Prostatectomy, I am fine, and have 0.01 or less Blood
test.
I can have regular erection, but with viagra, it is most gracious!!!!
A survivor........Rp 1999  age 49, T-23  7 on the richter schale,  wow....I
am lean and mean, and challenge the damn cancer in my body.
Wow, that sounded tuff.   I am a kind and gentle soul.
John Loomis
this was on tonight's news.  i know this will not come as a surprise to
anyone in the newsgroup.

~ curtis
_______________________

Dennis Gibson believes that when he was treated for prostate cancer his
doctor did not give him an honest assessment of the risk of side
effects.
"I can be brave. I can grit my teeth. I would have liked to not be
surprised," says Gibson.
Stan Klein is also a prostate-cancer survivor, who runs support groups
for others. He says side effects, such as impotence and urinary
incontinence, are far more common than most doctors admit. A new study
of 1,000 men conducted over eight years backs this assessment up.
"It a terrible thing to watch a man come into a support group with a
beautiful young lady by his side and tears in his eyes because he finds
out that he is impotent and he cannot go to functions because he is
incontinent," says Klein.
According to Dr. Simon Hall, chairman of the urology department at Mt.
Sinai Medical Center in New York, "Part of it is that the side effects
are not fully explained to a patient in detail."
Another problem is the ongoing debate about whether surgery is better
than radiation treatment. "I think certainly - traditionally -- there
has been a lot of competition between surgeons and radiation oncologists
between who's treatment is better," says Hall. And when asked if
doctors minimize the side effects as part of the sales pitch, Hall says
"yes."
Another problem is that not all doctors are equally skilled.
"There is a huge difference between surgeons," adds Hall. When
questioned whether that means you could have completely different
outcomes from two different doctors at the same hospital, Hall replies,
"Yes. ... I think that certainly this is one of the issues, that if we
look at the Medicare database and look at those patients, that ...
impotence is almost 90 percent of patients."
That number may be slightly high, he says, but there is no question that
prostate-cancer treatment is taking a bigger toll than many men realize.
? 2004 MSNBC Interactive

knowledge is power - growing old is mandatory - growing wise is optional
"Many more men die with prostate cancer than of it. Growing old is
invariably fatal. Prostate cancer is only sometimes so."
MH - 12 May 2004 10:03 GMT
> I have to say, that the day the catheter was removed, I only pissed myself
> once.  (and not much) It took 2 years for erectile funcion....
[quoted text clipped - 5 lines]
> Wow, that sounded tuff.   I am a kind and gentle soul.
> John Loomis

And that kind and gentle soul has been very supportive, John.  It shines
through all your posts, both to the group and privately.

Take care,
MikeH
MrBill - 12 May 2004 14:26 GMT
Thanks John, I needed that!

I had robotic LRP 12/15/2003, so I guess I am still healing.  Early on
before the surgery, during the news breaking meeting and all the
possible treatments, I asked the Dr. about nerve sparing and said if I
were to make the decision right then and there it would be robotic
surgery with nerve sparing.  When meeting with the robotic surgeon we
asked about the nerve sparing treatment and his response was, it is
still experimental and insurance will not pay.  The results are still
inconclusive and what he has seen is there is little advantage and
most of the problems are from the ankle area where they harvest the
nerve tissue from.  He said with robotics he can be more careful at
picking through the tissue and save as much nerve tissue as possible
and the results of not being impotent are in my favor concidering my
age and PSA 1.4.  Provided the cancer has remained in the organ, I
sould recover.  He said 8 months to 18 months is generally where he
sees the erection recovery happen.  Now at 5 months, the erections are
still a memory, but I am hopeful because the orgasims are still there.
Incontenance, I am pretty good but with an occassional dribble I
still do not feel comfortable being without a pad.  But not too bad at
all since a pad will last a couple days.
I do not regret the surgery, because I am now cured and at 49 still
have a long life ahead.  However, I still miss Woody.

MrBill
age at diagnosis 48
PSA 1.4
Gleason 3+3=6
T2a
robotic RRP 12/15/03
PSA 4/2 = <.1
age 49

> I have to say, that the day the catheter was removed, I only pissed myself
> once.  (and not much) It took 2 years for erectile funcion....
[quoted text clipped - 47 lines]
> "Many more men die with prostate cancer than of it. Growing old is
> invariably fatal. Prostate cancer is only sometimes so."
Alan Meyer - 12 May 2004 18:58 GMT
> ...  When meeting with the robotic surgeon we
> asked about the nerve sparing treatment and his response was, ...

That's great.  Every time I've tried asking the robot
anything all I hear is: 001101100011001110110101001.
ButtercupsDad@dog.net - 12 May 2004 13:11 GMT
I think I read somewhere that Hopkins considers a man "continent" if
he only needs one pad a day to catch the occasional drips.  Harvard
considers a man incontinent if he needs a pad at all.  Thus the
difference in the statistics that I read prior to my surgery last
year.  Hopkins = only 3% of men incontinent one year post RRP; Harvard
= 50%.   When I asked my uro about the stat's he just brushed it off
and said something about "who cares about a few little drips".  He, no
surprise here, trained at Hopkins.

On ED, I had problems there coming in, so I cannot really blame the
RRP.  Besides, tomorrow morning I get my first Caverjet injection, and
with four hour erections I should no longer have to worry about that
(ha).

Thank you.
David S.

>this was on tonight's news.  i know this will not come as a surprise to
>anyone in the newsgroup.
[quoted text clipped - 39 lines]
>"Many more men die with prostate cancer than of it. Growing old is
>invariably fatal. Prostate cancer is only sometimes so."
Danny McCarty - 13 May 2004 00:43 GMT
>Subject: Re: Effects of prostate cancer treatment downplayed
>From: ButtercupsDad@dog.net
[quoted text clipped - 3 lines]
>I think I read somewhere that Hopkins considers a man "continent" if
>he only needs one pad a day to catch the occasional drips.

By the Hopkins' criteria, I was continent last fall before I began
chemotherapy, two years after surgery.  After chemo, I go through four or five
pads a day, and they are literally dripping when I change them, because I don't
feel anything...

> Harvard
>considers a man incontinent if he needs a pad at all.  Thus the
[quoted text clipped - 50 lines]
>>prostate-cancer treatment is taking a bigger toll than many men realize.
>>=A9 2004 MSNBC Interactive
Bill Denton - 12 May 2004 17:01 GMT
"Dennis Gibson believes that when he was treated for prostate cancer
his
doctor did not give him an honest assessment of the risk of side
effects."

As I just posted in a reply to Ron/Peter, the problem is one of
definition. When the doctor tells us what the incidence of
incontinence and impotence are, he's not talking our language. To them
continence may mean not having to get up more than once a night and
not having to wear a pad 24/7. And potency means the ability after 2
years to get a transient, penetration-worthy erection w/ some type of
aid. So when the doctor says it is unlikely you will be incontinent or
impotent you sigh a sigh of relief and sign the form. Only to find out
later . . .

On a similar note, how many of you were told that you would not be
able to father children and that you should consider banking some
sperm if you want to retain that possibility? I guess I assumed
infertility to be the case but, if the doc had mentioned banking sperm
I might have done so; I did not think of that. I was a single, 51 year
old guy w/o children. My only brother has 2 girls so when he and I
die, that's it for our family. I'd have liked the possibility of
having a biological son to maintain the family name.

Bill Denton
RP 2/12/02
Memphis
ButtercupsDad@dog.net - 12 May 2004 17:53 GMT
    Good point on the ability to father a child.  I assume that
the testes are still manufacturing sperm after RRP.  With moderm
artifical fertilization methods are they able to harvest sperm to
impregnate a woman, meaning that, in theory at least, we still could
father a child?  And, if anyone knows, what about cost?  I had a
neighbor that had some type of artificial insemination procedure and
the cost was over fifteen thousand dollars for the procedure.  I doubt
that health insurance would cover any of that.
    Thank you.
David S.

>On a similar note, how many of you were told that you would not be
>able to father children and that you should consider banking some
[quoted text clipped - 8 lines]
>RP 2/12/02
>Memphis
Alan Meyer - 12 May 2004 19:19 GMT
> ...
> On a similar note, how many of you were told that you would not be
> able to father children and that you should consider banking some
> sperm if you want to retain that possibility? I guess I assumed
> infertility to be the case but, if the doc had mentioned banking sperm
> I might have done so ...

Well, here's another way to think about all this.

More than 99.9% of all DNA in all people is the same.
The differences between us based on heredity are
less than 0.1% of our DNA.

So when you think about it scientifically, we truly are
all members of the same human family.  Whether we
individually father children or not, we can be sure that
our genes really are being passed down to millions of
new babies every year.

To see the same point a different way.  Any peculiarities
in your genes, on average, only appear in 50% of your
children, 25% of your grandchildren, 12.5% of your
great-grandchildren and so on.  In 10 generations, less
than one-thousandth of your "uniqueness" still survives.

Our real genetic inheritance, the 99.9% inheritance, is
flowing in a broad stream independently of our own
particular circumstance.

   Alan
Danny McCarty - 13 May 2004 00:39 GMT
>Subject: Re: Effects of prostate cancer treatment downplayed
>From: "Alan Meyer" ameyer2@yahoo.com
[quoted text clipped - 14 lines]
>The differences between us based on heredity are
>less than 0.1% of our DNA.

And the difference between us and the great apes is in only about 1% of the
DNA.

>So when you think about it scientifically, we truly are
>all members of the same human family.  Whether we
[quoted text clipped - 13 lines]
>
>    Alan
ButtercupsDad@dog.net - 13 May 2004 12:51 GMT
I knew some guys in high school who were only .5% different from the
apes....

>And the difference between us and the great apes is in only about 1% of the
>DNA.
>
>>    Alan
Beverley - 13 May 2004 04:37 GMT
I don't know how but there is something about the uniqueness that carries
from one generation to another. Although I will admit my children do not
resemble me in any way - they are their father's girls! I was just the
incubator. Yet, I definitely resemble my ancestors!

But no one ever said anything about banking sperm - guess our doctors
figured we were well beyond such thoughts. Which honestly we were! But that
also bring up another thought - would you knowingly bring a child into the
world whose chance of having cancer is probably greater than 50%?   Just a
thought to ponder.
Bev

.

> > ...
> > On a similar note, how many of you were told that you would not be
[quoted text clipped - 27 lines]
>
>     Alan
al1096@loud.bellsouth.net> - 13 May 2004 12:38 GMT
But that
*also bring up another thought - would you knowingly bring a child
into the
*world whose chance of having cancer is probably greater than 50%?
Just a
*thought to ponder.

If that's what was discussed and truly planned for, I'd say yes. It'd
be no difference than questioning whether the child would become
involved in delinquent acts if one parent or a relative has had
problems with poor decision making skills.
I hope I that came out right.

Al
Please be quiet if replying via email,
flames will be deleted promptly.
I won't even read the whole message...
Lee - 12 May 2004 19:37 GMT
>this was on tonight's news.  i know this will not come as a surprise to
>anyone in the newsgroup.

No surprise, I agree that you aren't told everything but - had you
known everything you know NOW, what would you have done differently?

Lee
c palmer - 13 May 2004 07:50 GMT

On Tue, 11 May 2004 18:06:27 -0500, PALMER_ENT@webtv.net (c palmer)
wrote:
this was on tonight's news. i know this will not come as a surprise to
anyone in the newsgroup.

No surprise, I agree that you aren't told everything but - had you known
everything you know NOW, what would you have done differently?
Lee
--------------

hi lee - in answer to your question and another one about fathering
children.  i would have to say that my surgeon was 100% above board on
everything about the surgery.  he just didn't say anything about orgasms
and the sensations or lack of sensations after surgery until i nailed
him on them.  so, it goes back to the old saying about the question that
is never asked.

my surgeon told me that i could not ejaculate afterwards, and therefore
not father any children.  he did tell me that i may or may not have a
problem with continence.  he did tell me that erections was on an
individual basis and that it won't be better when you come out of
surgery.  he made it quite clear that if you had problems before you
went into surgery that that would be the best you would get back to,
after surgery.   he did tell me that i had a 15% chance on complications
from surgery due to scarring and that surgery is not risk free, and that
there was a possibility that i could die on the operating table and that
it does happen.  so i would say i have most of the facts before surgery
and they came from his mouth.

on the flip side, i would have to say that he is not trying to compete
for my business since was in the military and was a high ranking officer
and didn't have to do the surgeries since he was in charge of the
urology dept.

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional    
"Many more men die with prostate cancer than of it. Growing old is
invariably fatal. Prostate cancer is only sometimes so."
Lee - 13 May 2004 16:31 GMT
>On Tue, 11 May 2004 18:06:27 -0500, PALMER_ENT@webtv.net (c palmer)
>wrote:
[quoted text clipped - 12 lines]
>him on them.  so, it goes back to the old saying about the question that
>is never asked.

I know :(  My husband laments about this a lot. He didn't ask
specifics about quality of orgasm, erection, and so on, and of course
he wasn't told. I think, with the horror of coping with the big C
word. he was looking to hold onto anything, something, and not feel
any worse. I don't really know how he would have reacted had he been
told the truth... but I like to think he had a better 2 weeks pre-op
than he would have if he HAD been told, because of how important his
sex life was.  I do believe he would have gone ahead, regardless.

But I think it was better that the truth kind of unfolded over the
following year, ------ given his personality and ability to deal with
conflict.  But hey - maybe I'm just thinking in a protective way.  

All we can do is look ahead, I guess. But it's hard not to look back
and remember, and wish, although if nothing else, it makes us truly
appreciate all we had.  

Damn. He loves cheese. And now he looks at it with hatred and
resentment, LOL, because he wonders if he ate less cheese... if he
weighed 20 lbs less.... if he hadn't taken a testosterone
supplement,,, if he hadn't had so much sex... if, if, if,

I feel so sad when I see him look at cheese...

Okay. Time to go check my seedlings :)

Lee
Alan Meyer - 14 May 2004 18:02 GMT
> On Thu, 13 May 2004 01:50:31 -0500, PALMER_ENT@webtv.net (c palmer)
>
> supplement,,, if he hadn't had so much sex... if, if, if,

I don't know about cheese, but there was a study recently
that said that men who have had a lot of sex had --less--
likelihood of prostate cancer, not more.

The theory was that frequent ejaculation caused some
of the irritating chemicals in the prostate to be expelled,
rather than to sit there and do damage leading to cancer.

So now, instead of lamenting that he had so much sex,
he might have to lament that he didn't have still more!

Personally, I suspect that diet, exercise, sex, environment
and other factors we control play a role in determining
whether or not we will get cancer, but the major role is
probably played by heredity - something we can't do
anything about.

   Alan
al1096@loud.bellsouth.net> - 15 May 2004 06:01 GMT
*Personally, I suspect that diet, exercise, sex, environment
*and other factors we control play a role in determining
*whether or not we will get cancer, but the major role is
*probably played by heredity - something we can't do
*anything about.

I'm hoping heredity is, but i'm not too sure, at least in my case. I'm
the youngest known family member to have gotten procan, and am the
oldest son of 2 (little bro is 35). My father, well in his 60's hasn't
had it (or hasn't mentioned it), now, my great uncle and other uncle
have it but one's in his 80's or more, the other in 70's I think. I'm
hoping genetic research will one day be able to predict the occupance
of disease and even prevent it. One can hope...

Al

Please be quiet if replying via email,
flames will be deleted promptly.
I won't even read the whole message...
al1096@loud.bellsouth.net> - 15 May 2004 06:04 GMT
*Personally, I suspect that diet, exercise, sex, environment
*and other factors we control play a role in determining
*whether or not we will get cancer, but the major role is
*probably played by heredity - something we can't do
*anything about.

I'm hoping heredity is, but i'm not too sure, at least in my case. I'm
the youngest known family member to have gotten procan, and am the
oldest son of 2 (little bro is 35). My father, well in his 60's hasn't
had it (or hasn't mentioned it), now, my great uncle and other uncle
have it but one's in his 80's or more, the other in 70's I think. I'm
hoping genetic research will one day be able to predict the occurrence
of disease and even prevent it. One can hope...

Al

Please be quiet if replying via email,
flames will be deleted promptly.
I won't even read the whole message...
Steve Kramer - 15 May 2004 16:05 GMT
Science has pretty much ruled out simple heredity as being a causative
factor.  However, heredity does seem to be a factor when the victim is
unusually young for the disease.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA  .1  .1  .1  .27  .37  .75
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA  .07 .05
Lupron 7/03, 8/03, 12/03, 4/04

> *Personally, I suspect that diet, exercise, sex, environment
> *and other factors we control play a role in determining
[quoted text clipped - 15 lines]
> flames will be deleted promptly.
> I won't even read the whole message...
Alan Meyer - 15 May 2004 16:47 GMT
> Science has pretty much ruled out simple heredity as being a causative
> factor.  However, heredity does seem to be a factor when the victim is
> unusually young for the disease.

Have you got more information about this Steve, any
citations perhaps?

What age is considered young enough that heredity
is a factor?

   Alan
Steve Kramer - 16 May 2004 02:22 GMT
No citation, per se.  I've never been into citations except when doing a
staff study or something like that.

I can tell you that she is a prostate cancer researcher heading a team that
is looking into why HT goes refractive.  She did a talk at Bob Young's
Prostate Cancer Networking Group.

Basically, she went through all the myths and facts about what causes and
doesnt' cause it.  In the end there was heredity, if the your father and/or
brother got it young and there was a possibiliity that a link may some day
be found to diet.  And, of course, race.  Otherwise, smoking was not, lots
of sex and too little sex were not....

She talked about it a lot more than just cause and effect and if you Google
you might find a full report I did on it (about a year ago) and I might have
mentioned her name.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA  .1  .1  .1  .27  .37  .75
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA  .07 .05
Lupron 7/03, 8/03, 12/03, 4/04

> > Science has pretty much ruled out simple heredity as being a
> causative
[quoted text clipped - 9 lines]
>
>     Alan
ron - 15 May 2004 22:51 GMT
> Science has pretty much ruled out simple heredity as being a causative
> factor.  However, heredity does seem to be a factor when the victim is
> unusually young for the disease.

Steve..Maybe I'm missing your point, but I thought that heredity did
play a role in PCa as evidenced by:
1. families with BCa have increased risk for PCa
2. if your relatives have PCa, your odds are increased
...best wishes and good health, ron
Steve Kramer - 16 May 2004 02:26 GMT
According to the researcher, they have pretty much ruled out heredity except
in about 10% of the patients that were linked to those who caught it young.

For example, my father got it young.  I got it young.  Mine was probably
caused in part or in whole by genetics.  Curtis's father got it when he was
older.  Curtis caught it at 57 I believe.  It was probably not genetic.

I do not know what "young" is, but I assume it's <52 or 50.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA  .1  .1  .1  .27  .37  .75
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA  .07 .05
Lupron 7/03, 8/03, 12/03, 4/04

> > Science has pretty much ruled out simple heredity as being a causative
> > factor.  However, heredity does seem to be a factor when the victim is
[quoted text clipped - 5 lines]
> 2. if your relatives have PCa, your odds are increased
> ...best wishes and good health, ron
Alan Meyer - 17 May 2004 16:29 GMT
> According to the researcher, they have pretty much ruled out heredity except
> in about 10% of the patients that were linked to those who caught it young.
[quoted text clipped - 4 lines]
>
> I do not know what "young" is, but I assume it's <52 or 50.

Steve,

Your informant may have known the full story.

Here are a couple of recent studies I found by searching Pubmed.  They
claim that "gene expression", together with other factors, is a very good
predictor of recurrent vs. non-recurrent disease.  Thus even though it
may be true that statistical associations between father and son are not
strong unless the father was young at the time of diagnosis, there may be
underlying genetic factors that are only now coming to light.
----------------------------------------------------------------

J Clin Invest. 2004 Mar;113(6):806-8.

Gene expression profiling predicts clinical outcome of prostate
cancer.

Glinsky GV, Glinskii AB, Stephenson AJ, Hoffman RM, Gerald WL.

Sidney Kimmel Cancer Center, San Diego, California 92121, USA.
gglinsky@skcc.org

One of the major problems in management of prostate cancer is the
lack of reliable genetic markers predicting the clinical course
of the disease. We analyzed expression profiles of 12,625
transcripts in prostate tumors from patients with distinct
clinical outcomes after therapy as well as metastatic human
prostate cancer xenografts in nude mice. We identified small
clusters of genes discriminating recurrent versus nonrecurrent
disease with 90% and 75% accuracy in two independent cohorts of
patients. We examined one group of samples (21 tumors) to
discover the recurrence predictor genes and then validated the
predictive power of these genes in a different set (79 tumors).
Kaplan-Meier analysis demonstrated that recurrence predictor
signatures are highly informative (P < 0.0001) in stratification
of patients into subgroups with distinct relapse-free survival
after therapy. A gene expression-based recurrence predictor
algorithm was informative in predicting the outcome in patients
with early-stage disease, with either high or low preoperative
prostate-specific antigen levels and provided additional value to
the outcome prediction based on Gleason sum or multiparameter
nomogram. Overall, 88% of patients with recurrence of prostate
cancer within 1 year after therapy were correctly classified into
the poor-prognosis group. The identified algorithm provides
additional predictive value over conventional markers of outcome
and appears suitable for stratification of prostate cancer
patients at the time of diagnosis into subgroups with distinct
survival probability after therapy.

----------

Cancer Res. 2003 Jul 1;63(13):3469-72.  Related Articles, Links

Successful prediction of prostate cancer recurrence by gene
profiling in combination with clinical data: a 5-year follow-up
study.

Bettuzzi S, Scaltriti M, Caporali A, Brausi M, D'Arca D,
   Astancolle S, Davalli P, Corti A.

Dipartimento di Medicina Sperimentale, Plesso Biotecnologico
Integrato, Universita di Parma, Via Volturno 39-43100 Parma,
   Italy. saverio.bettuzzi@unipr.it

We show here that gene expression profiling, performed with
conventional techniques and focused on a selected group of genes,
when used in combination with standard clinical information,
provides reliable prognostic prediction of prostate cancer (CaP).
We showed previously that changes in the expression of
metabolically related genes are involved in CaP progression.  We
then proceeded to search further for correlations between
patients' gene profiling and recurrence with a 5-year follow-up
study conducted on the same cohort of patients in which the
molecular data were obtained. CaP prognosis was first assessed on
the basis of gene expression profiling alone; then the result was
compared with the prediction obtained using clinical and
pathological information (Gleason score, Tumor-Node-Metastasis
staging, prostate volume, or prostate-specific antigen levels at
the time of diagnosis). The best result was obtained with a
selected combination of gene profiling and clinical/pathological
parameters, which resulted in prediction of recurrence in 95.7%
of patients.
Alan Meyer - 17 May 2004 16:30 GMT
> Steve,
>
> Your informant may have known the full story.

I meant to say "may NOT have known the full story".
Steve Kramer - 17 May 2004 17:13 GMT
That's how I read it.  Funny how paradigms cause you to see that which not
there.  Or, in this case to see "not" which is not there.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA  .1  .1  .1  .27  .37  .75
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA  .07 .05
Lupron 7/03, 8/03, 12/03, 4/04

> > Steve,
> >
> > Your informant may have known the full story.
>
> I meant to say "may NOT have known the full story".
Steve Kramer - 17 May 2004 17:10 GMT
My 'informant' is, as I stated, is a full-time researcher at the DNA level
who is "comitted to finding out what causes PCa before my 14-month-old son
has to deal with the possibility (paraphrased)."  She therefore has
opportunity and motive to know as much as she can about Prostate Cancer at
the DNA level and it's predictors.  Either the facts are, her findings are,
or her opinion is that Prostate Cancer in older men is not a very good
predictor of Prostate Cancer in their sonse or male siblings.

The studies you cite below do not refute that.  Nor do they address the
issue.  They discuss predictive capabilities with regard to post-treatment
relapse.  And, having read the summaries, I will in the future lean towards
gene profiling and clinical/pathological
parameters as being the better predictor of post-diagnosis morbidity, but I
shall hereby contend that Gleason score, Tumor-Node-Metastasis staging,
prostate volume, or prostate-specific antigen levels at the time of
diagnosis is all that is normally, reasonably available to us in the NG.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA  .1  .1  .1  .27  .37  .75
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA  .07 .05
Lupron 7/03, 8/03, 12/03, 4/04

> > According to the researcher, they have pretty much ruled out heredity
> except
[quoted text clipped - 90 lines]
> parameters, which resulted in prediction of recurrence in 95.7%
> of patients.
ron - 15 May 2004 23:07 GMT
Hi Alan...Just to add a bit to the "increased ejaculation is
beneficial" study, it has also been reported that men who had 25 or
more sexual partners were 2.5 times more likely to be diagnosed with
PCa than men who had 5 or fewer partners.  Further, there have been
published reports showing a high incidence of sexually transmitted
viruses in tumors and serum taken from individual with PCa.  The tumor
study was 22 out of 22!..Best wishes and good health, Ron

> > On Thu, 13 May 2004 01:50:31 -0500, PALMER_ENT@webtv.net (c
>  palmer)
[quoted text clipped - 19 lines]
>
>     Alan
ron - 12 May 2004 21:35 GMT
90% impotence, give me a break; maybe the week after surgery or maybe
when compared against 19-year olds!  The following report suggests
that about 60%(39/63) of the men who were satisfied with sex prior to
surgery are satisfied after surgery (about the same for XBRT,
something less for SI).  This is consistent with the Scardino report
that I posted yesterday showing that about 62% of men are both fully
continent and potent 30 months post-RP...Ron

American Urological Association Annual Meeting
May 8-13, 2004
San Francisco, California, USA  

Program#/Poster#: 1185
Presentation Title: LONG-TERM OUTCOMES AMONG LOCALIZED PROSTATE CANCER
SURVIVORS: HRQOL CHANGES 4 TO 8 YEARS FOLLOWING BRACHYTHERAPY,
EXTERNAL RADIATION AND RADICAL PROSTATECTOMY
Presentation Time: 5/10/2004 2:10:00 PM
Author Block: David C. Miller, Martin G. Sanda, Rodney L. Dunn, Hector
Pimentel, Howard M. Sandler, William P. MacLaughlin, John T. Wei.
University of Michigan, Ann Arbor, MI, University of Michigan, Ann
Arbor, MI

Introduction and Objective: Long-term, patient-report HRQOL, as well
as HRQOL changes more than 2 years after brachytherapy (BT), 3-D
conformal radiation (3-D CRT) and radical prostatectomy (RP) have not
been characterized with validated QOL instruments. We sought to
evaluate long-term HRQOL changes and outcomes during the transition
from early to late survivorship after localized prostate cancer (CaP)
therapy.
Methods: In 1999, we had used a validated instrument (EPIC) to measure
HRQOL in a cohort of 1008 CaP patients (and age-matched control men)
at a median follow-up of 2.6 years after BT, 3-D CRT or RP. In the
current follow-up study, HRQOL for this cohort was re-assessed at a
median follow-up 6.3 years (range 4-8 years). Generalized linear
models were used to evaluate differences in HRQOL outcomes between
each of the 3 treatment groups and age-matched controls.
Results: The overall response rate was 73%. EPIC domain summary scores
are summarized in the table.

Age-adjusted, Long-term (median 6.3 years) EPIC Domain Summary Scores

HRQOL Domain            BT      3-DCRT  RP      Age-matched Control
Men
Urinary Irritative      81&#8224;*    84      91      89
Urinary Incontinence    78&#8224;*    86&#8224;    80*    92
Sexual                  28*     35&#8224;*    39*     63
Bowel                   86&#8224;*    84&#8224;*    94      96&#8224;
Hormonal                87*     89      91      93
&#8224; Denotes significant change in HRQOL domain score from 2 to 6
years of median f/u (p=0.05)
* Denotes significant difference in HRQOL domain score at 6 yrs of
median f/u vs. controls (p=0.05)


During the follow-up interval, the greatest improvement in HRQOL was
for urinary irritative symptoms among BT patients (p<0.001).
Nevertheless, long-term urinary irritative summary scores remained
better for RP compared with BT (p<0.01) and 3-D CRT (p<0.01).
Coincident with an interval decrease in bowel HRQOL among 3-D CRT
patients (p<0.01), long-term differences in bowel HRQOL were observed
for RP versus 3-D CRT and BT (p<0.01).
Conclusions: Long-term HRQOL outcomes vary based on type of therapy.
Late changes in urinary, bowel and sexual HRQOL may be anticipated
following BT and 3-D CRT, with improvements in some domains (e.g.
urinary irritation and bowel (BT)) and deterioration in others (e.g.
urinary incontinence (BT and 3-D CRT), sexual (3-D CRT) and bowel (3-D
CRT)). In contrast to these late changes in post-BT and 3-D CRT
outcomes, post-prostatectomy HRQOL was relatively stable after at
least 4 years of follow-up.
                   
> if we
> look at the Medicare database and look at those patients, that ...
> impotence is almost 90 percent of patients."
> That number may be slightly high, he says
Louis V. Spielman - 18 May 2004 05:19 GMT
The real question should be: What is the cost of NOT getting prostate cancer
treated, by risk group or Gleason score?
this was on tonight's news.  i know this will not come as a surprise to
anyone in the newsgroup.

~ curtis
_______________________

Dennis Gibson believes that when he was treated for prostate cancer his
doctor did not give him an honest assessment of the risk of side
effects.
"I can be brave. I can grit my teeth. I would have liked to not be
surprised," says Gibson.
Stan Klein is also a prostate-cancer survivor, who runs support groups
for others. He says side effects, such as impotence and urinary
incontinence, are far more common than most doctors admit. A new study
of 1,000 men conducted over eight years backs this assessment up.
"It a terrible thing to watch a man come into a support group with a
beautiful young lady by his side and tears in his eyes because he finds
out that he is impotent and he cannot go to functions because he is
incontinent," says Klein.
According to Dr. Simon Hall, chairman of the urology department at Mt.
Sinai Medical Center in New York, "Part of it is that the side effects
are not fully explained to a patient in detail."
Another problem is the ongoing debate about whether surgery is better
than radiation treatment. "I think certainly - traditionally -- there
has been a lot of competition between surgeons and radiation oncologists
between who's treatment is better," says Hall. And when asked if
doctors minimize the side effects as part of the sales pitch, Hall says
"yes."
Another problem is that not all doctors are equally skilled.
"There is a huge difference between surgeons," adds Hall. When
questioned whether that means you could have completely different
outcomes from two different doctors at the same hospital, Hall replies,
"Yes. ... I think that certainly this is one of the issues, that if we
look at the Medicare database and look at those patients, that ...
impotence is almost 90 percent of patients."
That number may be slightly high, he says, but there is no question that
prostate-cancer treatment is taking a bigger toll than many men realize.
? 2004 MSNBC Interactive

knowledge is power - growing old is mandatory - growing wise is optional
"Many more men die with prostate cancer than of it. Growing old is
invariably fatal. Prostate cancer is only sometimes so."
Rose - 18 May 2004 23:53 GMT
> this was on tonight's news.  i know this will not come as a surprise to
> anyone in the newsgroup.
[quoted text clipped - 39 lines]
> "Many more men die with prostate cancer than of it. Growing old is
> invariably fatal. Prostate cancer is only sometimes so."

I think that this is a very honest assessment of the situation.  I was
present for every consultation that my husband had before his surgery,
and only issues that we specifically asked about were addressed by the
doctor. And we didn't know enough at that point to shoulder that
responsibility.

On the issue of impotence, we were told 50% chance.  I said, "That
does not sound very good."  However, after researching impotence after
rp surgery on the net, I think that an honest answer should have been
90%. Recent studies reveal impotence to be as high as 79-88 percent.
The October 2000 Journal of the National Cancer Institute reported
impotence of 79.6% two years after surgery in a diverse group of
patients age 55-74 years.  The Journal of Urology, March 2000,
reported that 88.4% of 1,069 patients reported by survey that they
were impotent at least 6 months following rp.

Immediately after telling my husband that his chance of being impotent
would be 50% following surgery the doctor said, "But we have
treatments such as Viagra for the impotence."  Well, that sounded
good, and we took that to mean that Viagra would work should my
husband be in that unlucky 50%. Unfortunately, 7 months after surgery
nothing(including Viagra, Levitra, Cialis, and Caverject) has worked.

The doctor never mentioned that shrinkage of the penis length is
almost certain after surgery and can amount to several inches.

We believed that my husband would be 'cured' after the surgery.  His
doctor did not say that he might not be 'cured' after the surgery. He
never mentioned that in 20-40% of patients the cancer comes back.  My
husband (on his lunch break) heard a urologist on the tv say that.

I believe that it is an understatement to say that "side effects are
far more common than doctors admit."  Quoting a 50% chance of
impotence does allow one more room for hope, but after our experience
I'm thinking that it is a false hope and it would be a kindness to
tell the truth.
Ron - 19 May 2004 03:48 GMT
> The doctor never mentioned that shrinkage of the penis length is
> almost certain after surgery and can amount to several inches.

Neither did mine.  I had no inkling that that was going to happen.

I hate having to sit down to go especially in public restrooms.  If I don't
I almost always end up with wet pants and/or a wet floor.
al1096@loud.bellsouth.net> - 19 May 2004 04:10 GMT
<snip>

*Neither did mine.  I had no inkling that was going to happen.
*
*I hate having to sit down to go especially in public restrooms.  If I
don't
*I almost always end up with wet pants and/or a wet floor.
*

Nor mine, however, I read that it occurred, but I can't see a
noticeable decrease in my size, except flaccid. I'm curious to know
why this happens. Maybe a decrease in normal blood flow within the
penis? Or since nerves may have been damaged in operation, the organ
doesn't respond to everyday stimulus like before? May call my uro
tomorrow and ask. And that brings up another question, has anyone's
doctor told them that they removed some lymph nodes during procedure
and found that the cancer did not escape the "capsule"? Does this
indicate a much greater chance of non-return of PSA and cancer?

Al
btw, I can't remember the initial numbers but I remember <.1 and am
happy with that one!

Please be quiet if replying via email,
flames will be deleted promptly.
I won't even read the whole message...
MH - 19 May 2004 04:13 GMT
And that brings up another question, has anyone's
> doctor told them that they removed some lymph nodes during procedure
> and found that the cancer did not escape the "capsule"? Does this
> indicate a much greater chance of non-return of PSA and cancer?

You bet it does, Al!  :-)

MikeH
VSLARRY@weizmann.weizmann.ac.il - 20 May 2004 12:40 GMT
Both my urologist and the urological oncologist to whom he sent me thought that
a prostatectomy would almost certainly lead to incontinence in my case. We did
not discuss impotence. They both thought that external radiation or watchful
waiting was best, my urologist leaned to radiation; the oncologist to waiting.

We went to radiation. It is too soon to tell. My PSA is down, but it never
was above 2 anyway. The Gleason score was 6. The problem was discovered by
biopsay after the urologist did not like the feel of a manual rectal prostate
examination.

Both did warn me after the decision was made of possible urinary and sexyal
dysfunction.
 
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