Bob has done what is necessary to join: he has posted his message.

I don't quite understand. The Gleason score is expressed as x+y=z. Frex,
4+3=7. The first number is the pathologist's opinion of the state of the
most common prostate cancer (PCa) cells; the second number is the state
of the second-most common. Nowadays, the more up-to-date pathologists
will report a tertiary number, especially if it is at the high end.

(snip)

It is not unheard-of for PCa to recur -- or to manifest itself again,
having never been gone.

Shameful treatment.

(snip)

That is exactly the right question, and the answer is an emphatic "yes."
They are called oncologists, genuine cancer specialists. There are two
subtypes, radiation and medical. Rad oncs mainly treat local
occurrences. Med oncs have a wider scope.

Some of those who specialize in tx of PCa are listed via this portal on
the authoritative website of the Prostate Cancer Research Institute:
http://prostate-cancer.org/resource/find-a-physician.html

So far as the SEs (side effects) of ADT (androgen deprivation therapy),
the nature and extent of SEs are entirely an individual matter. And they
can be treated. And, if the patient simply will not tolerate it, the tx
can simply be stopped. That would have a cost, though.

The SEs of ADT are known collectively as Androgen Deprivation Syndrome
(ADS). Here is a link to a thorough exploration of the subject and what
to do about it:
http://www.prostate-cancer.org/education/sidefx/Strum_ADS.html
and more at:
http://www.prostate-cancer.org/aboutus/acomplsh_research%20.html

Note well that loss of bone mineral density (aka osteopenia and
osteoporosis) is an inevitable SE of ADT. This, too, can be treated.

There is most certainly no need to apologize. The news is enough to
rattle anyone.

Regards,

Steve J

Tried fish oil yet? Lowered my total chol and LDL, knocked my
triglycerides from 175 to 50, and almost doubled my HDL. Statins
crippled me for a year.

Smartest move you've offered us yet, given your prior doc simply
pronounced you cured. We aren't "cured" until we die of something else
with an unmeasurable PSA.

Read the many PC books. Consult other reputable web sites (e.g., major
hospital and university sites, PCRI, etc.). Google the archives of this
forum (ask how if you need to) with key words such as ADT, HT, hormone
therapy, etc. Google androgen deprivation syndrome or find it at the
PCRI website.

Yep, hormone therapy (ADT) side effects (SEs) can be horrific, a
nuisance, or anything in between, and ADT is increasingly under attack
as a treatment. And for HT aka ADT you will consult a medical
oncologist; urologists are primarily surgeons.

I.P.

You seem to have found a primary care physician who is on top of these
things, and you would be well advised to get your information from hers.
 Don't relay on what you read here, including what I say.  But I wil
tell you what I know from my reading and my experience for what it is
worth.  Remember I am not a physician.

As Steve pointed out, Gleason scores are whole numbers.  Was it 6 or was
it 8?  Which it was would make a big difference.  Perhaps you mean that
your pre-surgical PSA was 6.8, which would have been a matter of some
concern in a 48 year old man but not a reason to panic.

If your Gleason was 6, the advice was reasonable.  In such cases, unless
there was some other factor you didn't mention, the overwhelming
majority of radical prostatectomies end in a cure.   If your
pre-surgical Gleason was 8, then the situation was not so clear.   I
don't know just what the odds of a cure would be for such a case for a
man of age 48, but they would have been considerably lower.  If that was
the case, it might still have been your best bet, since your chances of
a cure would have been less with other choices.  But your physicians
should have told you all that at the time.  The fact that they told you
it was "curative" suggests that probably the pre-surgical Gleason was 6
or at worst 7.   You should be able to find out by going back over your
medical records.

 Post operative biopsy Gleason was 8 (four month

The post surgical Gleason is determined shortly after surgery by a
pathologist.  The pathologist also reports a lot of other information
such as whether or not the tumor was confined to the prostate and if not
whether it had migrated to the seminal vesicles or lymph nodes.  It is
usual for a surgeon to discuss the pathology report with the patient,
and if the Gleason score had actually jumped to 8, he should have
carefully explained its meaning and how it affected your chances of
being cured.  Whether or not there would be a reason for additional
treatment at that point is not clear.   Almost always in such a
circumstance,  physicians would wait for a recurrence showing up as an
increase in PSA before recommending any additional treatment.

Given a Gleason of 8, some oncologists might recommend starting hormone
therapy immediately, but I don't think most would  Few oncologists argue
that hormone therapy can cure prostate cancer, and it may have serious
side effects.  There is no good research evidence that I've heard of
that supports beginning hormone therapy for a case like yours before
there is clear evidence of recurrence.  However, if your pathology
report had shown that the cancer had spread to the seminal vesicles or
lympth nodes the case for beginning HT at that point would have been
stronger.  Or followup radiation might have been suggested.

The fact that your PSA apparently remained stable for 5 years suggests
that beginning HT immediately after surgery was not warranted.  If you
are worried that had you done it at the time, you might have been cured,
all I can say is that there is no good evidence that such is the case.

Are you sure it was just less than 1.0.   Anything higher than 0.1 would
be considered a warning sign and if it got to 0.2 or 0.3, usually a
physician would recommend some follow-up.  I think it must have been
less than 0.1 since that is what you say it was in 2002.

If your PSA was staying below 0.1 or even if it had reached that level
and stayed there, following up with hormone therpy (Lupron) would not
have been indicated.   Your doctors apparently told you the truth.

I was told no, the surgery was curative. I had a yearly PSA test

That gets us to 2001.  To say you were home free is an exaggeration.
There is no period after which the risk of recurrence drops to zero.
Prostate cancer can and does recur many years after treatment.  When
doctors say you have been "cured"  they mean that the odds are very
highly in your favor.

 As I have elevated

This shows clear recurrence.  You should have been referred to an
appropriate specialist, either a urologist or oncologist.  Most likely,
the advice would have been secondary treatment with radiation, but they
might have recommended waiting a bit before doing anything to see just
how fast the PSA was rising.  It wasn't going up terribly fast at that
point.

Given the situation, that is really strange

This shows clear progression.  You should have been notified of the
results and your doctor should have been discussing things with you.

It is clear that someone screwed up.

There are several books you could read about prostate cancer.  I like
the one by Peter Scardino called The Prostate or Walsh's Guide to
surviving Prostate Cancer.  Steve Jordan will probably recommend the
book by Strum, who is an oncologist.

But you should realize that you are now in an area where scientific
research doesn't provide a clear guide.  Whereas the advice given to you
in 1996 and immediately after was pretty much boiler plate,  experts in
prostate cancer differ significantly about how effective HT is and when
to begin it.  Some believe it should be started at the first indication
of recurrence, and a few think it should be begun even before that in
high risk cases.   Others believe it has no effect on the ultimate
course of the disease and it should be started when needed to avoid
unpleasant effects of advancing cancer.  And there are people in
between.  In addition, different strategies may be appropriate for
different men.

My advice would be to learn as much as you can but not prejudge the
case.  See more than one oncologist to get additional opinions.  Above
all, try not to panic.   HT affects different men differently, and how
long it takes the cancer to grow and how long it will be effective are
uncertain.  You could easily live out a normal life span and not suffer
significantly from the cancer or side effects of treatment.  You might
also see if there are any clinical trials which you might be enrolled
in.   Sometimes those trial are for patients in the last stages of a
disease, but there are some designed to test treatments for patients,
like you, at a much earlier stage.

Not out of line at all.   You have come to the right place.  It is
understandable that you are rattled.  You face a serious disease, and
you appear to have been badly treated by some physicians along the way.

Good luck.

This is all you need to join.  Welcome!

It is a damned shame your doctor(s) lead you down the garden path.  Surgery
is "curative", but not necessarily a "cure".  A Gleason 8 almost is too high
for surgery and, at the very least, warrants very active surveillance of
your PSA.  You should have, at the least, quarterly PSAs starting in '96 and
then annual PSAs maybe by 2001.  As soon as it had risen three times, you
should have had other treatment.

That said, you are one lucky son of a gun!  You had a Gleason 8 and didn't
watch your PSA for 12 years and it's only a 2.1.  Damn!!

I think you have another curative alternative to hormone therapy.  You can
have your prostate bed radiated.  Admittedly, it's about four years too
late, but it is still worth a shot.  As slowly as your cancer is growing, it
could still be right there where they removed the prostate.

If that doesn't work, you can always consider hormone therapy.  I've been on
Lupron for almost 6 years with Casodex added for almost 3 years and I still
work full time, have an active life, and have very low PSAs.