Hennenfent's "Surviving Prostate Cancer Without Surgery"

If I could, I'd like to solicit the opinions of the folks here on the
book in my subject line. I have to admit, after exploration, I am
confused as ever as to what is the right thing to do.

Currently, my opinion is that surgery is the best treatment for
eradicating the cancer but it also comes with the highest percentage
of risk for incontinence and impotence. Of the surgical methods, the
RLRP seems to be the best option. Radiation leaves the chance of
damaging surrounding tissue and does not appear to be as thorough at
treating the cancer over the long term but has far less risk
associated with I&I

At 45 years of age, I am most interested in staying alive to be a
father and husband but obviously am fearful of the I&I that may come
from surgery, not to mention microscopic cancer not taken care of
during the procedure.

Also, I am starting out by going to see Dr. Tewari at NYPH Cornell in
the near future for a consult. Has anyone here had any experience with
Dr. Tewari? He came highly recommended.

Please feel free to not sugar coat responses (not that some of you
would) as I am humbled by my ignorance and make no bones about it, and
as always all responses are valued and appreciated.

<Paul> wrote in message newsm2m035rrtcls928ad07ktp93e0gp3kik3@4ax.com...
> If I could, I'd like to solicit the opinions of the folks here on the
> book in my subject line. I have to admit, after exploration, I am
> confused as ever as to what is the right thing to do.
>
> Currently, my opinion is that surgery is the best treatment for
> eradicating the cancer but it also comes with the highest percentage
> of risk for incontinence and impotence. Of the surgical methods, the
> RLRP seems to be the best option. Radiation leaves the chance of
> damaging surrounding tissue and does not appear to be as thorough at
> treating the cancer over the long term but has far less risk
> associated with I&I
>
> At 45 years of age, I am most interested in staying alive to be a
> father and husband but obviously am fearful of the I&I that may come
> from surgery, not to mention microscopic cancer not taken care of
> during the procedure.
>
> Also, I am starting out by going to see Dr. Tewari at NYPH Cornell in
> the near future for a consult. Has anyone here had any experience with
> Dr. Tewari? He came highly recommended.
>
> Please feel free to not sugar coat responses (not that some of you
> would) as I am humbled by my ignorance and make no bones about it, and
> as always all responses are valued and appreciated.

I'm one of the few guys in this NG who has, for the moment, chosen "active
surveillance" rather than surgery, radiation, etc. I was initially planning
on surgery, then read Dr. Bradley Hennenfent's book, which is pretty much a
tirade against most conventional forms of treatment. I'm glad it made me
hesistate, because I then did a LOT more research. An early discovery was
that the surgeon I first saw, who I had assumed would do my operation, was a
nice guy but not a particular expert. I found my way to a team of prostate
oncology specialists who don't discourage active forms of treatment, but who
also are supportive if patients want to move slowly.

So I guess I owe Hennenfent a debt of gratitude. That said, much of the data
used in the book is fairly old, in terms of the rapid pace of research in
prostate cancer, and I think most specialists, regardless of their approach,
would say he is pretty extreme in his views.

At 45 you are nearly 20 years younger than I am. I cannot imagine being in
your position and NOT electing some form of active treatment. I don't know
your stats (PSA, Gleason, etc.) but the fact that you have been diagnosed at
your young age, and your family history, suggests that you do want to move
aggressively to give yourself the best chance of a long life with your
family.

Certainly there are risks of side effects, including incontinence and
impotence. My brother, some years older than I, has wrestled with both
following his surgery. But he has managed to live a very good, full life
regardless.

From what I understand, it is NOT true that radiation has a low risk of
incontinence and impotence. It's just that such side effects, if they occur,
tned show up later (as may rectal damage.) Since you are so young, there's a
chance that such side effects could show up in your 50s, while you are still
younger than most of the guys in this group.

Another consideration to discuss with your doctor is what happens if the
treatment you select doesn't do the job. If you have surgery, you can later
radiate the pelvic area if rising PSA suggests that some cancerous tissue
was left behind. If your initial treatment method is radiation, you
typically won't have the option of surgery later.

You are on the right track, doing research and exploring your options.
Continue to do so until you are comfortable in your choice, recognizing that
members of our club never get certainty, just probabilities. But interpret
all of what you read, and the advice you may see here, in light of your
relatively young age -- meaning you may want to focus much more on lifespan
than on quality of life. My recollection is that Hennenfent puts a lot of
emphasis on QOL issues.

Good luck, and good health.

Alex

Paul wrote:
> If I could, I'd like to solicit the opinions of the folks here on the
> book in my subject line. I have to admit, after exploration, I am
> confused as ever as to what is the right thing to do.
>
> Currently, my opinion is that surgery is the best treatment for
> eradicating the cancer but it also comes with the highest percentage
> of risk for incontinence and impotence. Of the surgical methods, the
> RLRP seems to be the best option. Radiation leaves the chance of
> damaging surrounding tissue and does not appear to be as thorough at
> treating the cancer over the long term but has far less risk
> associated with I&I

Hennenfent has been discussed here before; I've forgotten the details,
but you can Google the forum archives on his name. (If you don't know
how, ask. It's simple.)

Don't forget you're lumping urinary incontinence with bowel incontinence
in particular, broader bowel risks in general. The odds of long-term
bowel incontinence aren't high, but the odds of long-term bowel problems
are quoted as high as 47% in some books. Your youth and potence are
certainly factors, and if you go into RP with no bowel problems, you're
more likely to come out with few or none. OTOH, RP sometimes appears to
precipitate bowel cancer a decade or two down the road. And although you
can father children after an RP even if completely impotent, it's not as
much fun as the usual method. If any of that surprises you, sounds like
your research needs to expand in that direction, because that comes from
2-year-old memory and only scratches the surface.

The only person capable of making a decision you can accept 15 years
from now is you, and I strongly suspect the only way to make it is to
keep digging -- reading and asking about cancer and its treatments and
defining your priorities -- until you awake one morning with a clear
choice in your head and a grim, convinced smile of relief on your face.

May we assume you will consult specialists in the various treatments
you're considering?

I.P.

> OTOH, RP sometimes appears to precipitate bowel cancer a decade or
> two down the road.


Don't you mean RT?

<Paul> wrote in message newsm2m035rrtcls928ad07ktp93e0gp3kik3@4ax.com...

> If I could, I'd like to solicit the opinions of the folks here on the
> book in my subject line. I have to admit, after exploration, I am
> confused as ever as to what is the right thing to do.

I am not a doctor. My sole experience is my own. I entered this fracas
with numbers close to yours, except PSA. My only expertise is my own
research, my own experience, and seeing how 739 other soldiers (this is for
the metaphor idiot) have fought and are fighting this bastard.

Based on my exprience, I can tell you that was advsied that at Age 46 with a
Gleason of 7, my only choice in 2000 was surgery; specifically, RRP. Since
then, LRP and RLRP have become more commonplace. My opinion is your only
choice is surgery: RRP, LRP, or RLRP.

Based on my research, your only reasonable choice is surgery.

Based on the 739 people who have come across this newsgroup, 30 reported
their age at 45 or less when diagnosed. Of those 30:

One with a PSA of 9.6 and a Gleason of 4+3=7 (keep in mind that's slightly
worse than 3+4=7) in 2000, I think. He had HT and 3DAIMRT, but that might
have been after a recurrence. That was Dwight Fitzhugh
(dwightfitz@attbi.com).

One chose HT, but he had a Gleason of 9.

One chose RRP and RT, but he had a Gleason of 8 and was dx'd at Stage T3.

One chose HT, but his PSA was 865.

I do not know the treatment that four chose. The rest chose surgery.


> Currently, my opinion is that surgery is the best treatment for
> eradicating the cancer but it also comes with the highest percentage
> of risk for incontinence and impotence. Of the surgical methods, the
> RLRP seems to be the best option. Radiation leaves the chance of
> damaging surrounding tissue and does not appear to be as thorough at
> treating the cancer over the long term but has far less risk
> associated with I&I

Your problem (and my problem) is that you're just too damned young to have
cancer. Surgery has a slightly better chance of saving your life, but
radiation has a good chance of screwing things up 20 years from now. Most
prostate cancer patients don't have to worry about what happens in 20 years.

> Please feel free to not sugar coat responses (not that some of you
> would) as I am humbled by my ignorance and make no bones about it, and
> as always all responses are valued and appreciated.

Now you tell me!!!

Okay, how about this? Rather than admit your ignorance, find out what you
need to know. I will humbly tell you that when it was my turn in the
barrel, I let my wife do the research until I snapped out of whatever zone I
was in. If you can control it, I advise you snap out of it at your earliest
chance. Your decision may affect the quantity and quality of your life.

Paul,

I agree with others that, assuming that you have a definitive
diagnosis of cancer, you are very young to engage in watchful
waiting. The problem is that cancer is most treatable when it is
caught early. Waiting a few months while you research options
probably has little effect on treatment outcomes, but waiting for
years may have a negative effect. If the cancer grows to the
point where you absolutely know that you will die without
treatment, you may have already given up some positive odds that
you have now.

Radiation is thought to be riskier for young men like yourself
than surgery, and has no better an outcome. So surgery is
probably the choice that most specialists would recommend.

As for side effects, the main thing you can do to minimize them
is to find the most experienced, competent, committed surgeon
that you can find. A surgeon that does hundreds of
prostatectomies per year is ideal. Guys like that have seen
almost everything and have developed great skill in doing their
jobs.

Side effects are also less likely to be severe in a young man.
Both potency and continence are more easily recovered by a young
man than an old one.

Furthermore, the side effects are not as debilitating as you
might imagine they are. Impotence does not mean that sex is
impossible. What it means is that you cannot achieve a usable
erection without aids (Viagra, pump, or perhaps injections.)
With the help of those aids, most impotent men can achieve a
usable erection.

Impotence also doesn't mean that sex is no longer enjoyable.
Even without an erection, orgasm is still possible and still
pleasurable. And don't think for one minute that you cannot be a
good husband. You can certainly bring your wife to orgasm
without an erection and you can have a joint sex life as good as
anyone on the planet. It may be a little different, but
everyone's sex life is a little different. You are no less of a
man for that.

Incontinence sounds awful, but there are many men here who are
incontinent and, once they get used to it, find that it doesn't
keep them from leading the same life they led before. Maybe you
have to wear diapers and pads. I'm guessing that's more trouble
than wearing glasses, but less trouble than, say, walking with a
cane or having a chronic itch. In other words, its manageable.
It only drives you crazy if you let it do that. And if it's
really a burden, there are other techniques besides diapers and
pads to control it.

I suggest first that you find the best doctor you can. I've
heard of Tewari and believe he's well known but I don't know
anything more about him.

Secondly, I suggest that you resolve that, although you may
become impotent and you may become incontinent, you will NOT
allow it interfere with your self image and you will NOT consider
it any more than a minor and manageable problem in your life.
The odds are better than you think that you will recover both
potency and continence. Most men do, and especially most young
men with good surgeons. But if not, then you'll just deal with
it and not get bent out of shape.

Best of luck.

Alan

Bob Anthony wrote:
>> OTOH, RP sometimes appears to precipitate bowel cancer a decade or
>> two down the road.
>
>
> Don't you mean RT?

Absolutely. Glad you caught that typo.

I.P.

Paul wrote:
> If I could, I'd like to solicit the opinions of the folks here on the
> book in my subject line. I have to admit, after exploration, I am
> confused as ever as to what is the right thing to do.

You shouldn't consider watchful waiting at your age.

>
> Currently, my opinion is that surgery is the best treatment for
> eradicating the cancer but it also comes with the highest percentage
> of risk for incontinence and impotence.


If you have a competent surgeon, and you aren't currently experiencing
urinary problems, the chances of serious long term incontinence is
pretty small. For a man your age, a skilled surgeon should be able to
avoid long term impotence in over 80 percent of the cases. Again, for
someone your age, you aren't going to do much better with radiation
therapy in that regard. Keep in mind also that impotence can be
treated, and even if you are one of the unlucky ones, it doesn't mean
the end of an active sex life.


> Of the surgical methods, the
> RLRP seems to be the best option.

Perhaps, and perhaps not. You should do well with conventional RRP also.

> Radiation leaves the chance of
> damaging surrounding tissue and does not appear to be as thorough at
> treating the cancer over the long term but has far less risk
> associated with I&I

I don't think there is any significant evidence that for a man your age,
with a skilled surgeon, radiation has any significant advantages in that
regard.

>
> At 45 years of age, I am most interested in staying alive to be a
> father and husband but obviously am fearful of the I&I that may come
> from surgery, not to mention microscopic cancer not taken care of
> during the procedure.

You are talking as though incontinence and impotence are inevitable if
you have surgery. Let me repeat. Serious long term incontinence is
highly unlikely and long term impotence is unlikely if your surgeon is
skilled.

Your main concern should be getting a surgeon who has good results in
curing the cancer and secondarily avoiding side effects.

>
> Also, I am starting out by going to see Dr. Tewari at NYPH Cornell in
> the near future for a consult. Has anyone here had any experience with
> Dr. Tewari? He came highly recommended.

I don't know anything about his from personal experience. From the
Cornell Urology website, it appears that he is pretty experienced with
RLRP. You should ask him what the likelihoods are of (a) recurrence,
(b) incontinence, and (c) impotence, for a patient with your
characteristics if he does the surgery.

I am a bit concerned about his prostate recurrence calculator. It
predicts a much higher rate of recurrence than the methods published by
Scardino, et. al. at Sloan Kettering and Walsh, et. al. at Hopkins.
For example, in a case like mine, both of the latter predict the
likelihood of non-reucrrence for 7 years is well over 90 percent.
Tewari's calculator predicts only 58 percent. That, of course, doesn't
mean that he predicts high rates of recurrence for his own patients, but
you should ask him about it.

>
> Please feel free to not sugar coat responses (not that some of you
> would) as I am humbled by my ignorance and make no bones about it, and
> as always all responses are valued and appreciated.

I think you are jumping to conclusions, and you need to understand the
disease better. Prostate cancer is a complex disease, and results can
be very different depedning on age and the details of the diagnosis.
There are no certainties, but you need to get some idea of what the odds
are for a case like yours. You can't get reliable information by
comparing yourself to other men, who may differ from you in importatn
regards.
>