Replying to myself.  Now, that's bad.  I was looking at Strum's section
on ADT and, OMG, here we go again.  It's more complicated that initial
diagnosis, and wasn't that a fun few hundred hours itself?

Good for you!

I am terribly sorry to see this, Laurel.  You're taking it extremely well.

I believe reservations regarding HT is that some believe that it is used too
soon for rising PSA subsequent to an initial treatment.  I don't think there
are reservations regarding HT for the treatment of metastasizes and high
PSA.

I think the initial post op PSA is going to tell you and yours which
direction to go.  If it goes down to something below 1.0, maybe you can hold
off for a little while.

As far as what to look for if HT is started, his testosterone will stop
production.  Whereas his RRP will have effected his ability for sex, the HT
will change his desire for it.  On the bright side, when he says you're
pretty, he means you're pretty.

Side effects may including hot flashes, weakness, reduced mental acuity, man
breasts and others.  These can range from a minor irritant to debilitating.

More importantly, for the next few days, he's going to be somewhere far, far
away.

I'm very sorry to hear this Laurel.  You and Steve are in my thoughts and
prayers.

-RonL

I feel your pain and I hope things start turning around for you.   I
was fortunate (?) enough that I did not go the RP route before finding
the beast had met to the bone.  I'll be seeing a medical oncologist on
Monday for his advice on my treatment.  Right now it looks like HT is
my future.  The treatment of choice in 2006 seems to be a month of
Casodex and then Lupron for as long as it works.

Lots of trials going on but nothing with any lasting, proven results
yet.  There are tons of information out here on the web as well as the
experiences from this ng.  Keep 'googling', keep us informed and I'll
try to do the same. Best of luck and my prayers are with you.

Especially given the extent of Steve's pathology, that implies to this
layman that Steve has an excellent surgeon.

Again IMO, I concur 100%. If Steve had gotten RT based on the 1/10, and
had thus gone on his merry way basing decisions on that initial G7
reading, you two and your doctors would be in for some unnecessarily
early, drastic surprises.

I hope that works out well. My local oncs didn't want to take over from
another doc even though my local docs had recommended I go elsewhere due
to my unusual dual surgery. That's OK in my case; my surgeons are just
three hours away (when the mountain pass isn't closed by snow, as it
often is), they are oncs and researchers, I like them, they have an
entire team of oncs involved in my case, I need to visit them in person
or over the phone only quarterly, and Seattle has great seafood and --
so far -- infinitely better weather than Phoenix.  If I need RT some
day, that'll be a different story; I'll get that done locally as long as
my oncs approve my local cancer RT center.

I have lots of reservations/complaints about ADT (aka HT) ... and BMWs,
surgery, George Bush, wine, big cities, broccoli, most of the "news"
media, the Hollywood glitterati, calm weather, and those dumbass knit
skullcaps kids wear these days. But each of those has far worse
alternatives and some advantages, so must be examined in light of their
whole picture. My post-op picture was benign in the sense that my
margins were negative: there was a decent chance they had removed all
the (prostate) cancer from my body. That makes my post-op ADT
therapeutic index (the ratio of expected benefit to expected harm)
significantly different from Steve's.

His G9 is measurably more threatening than my G8 was (and my post-op
pathology downgraded most of my G8 to G7), so his higher odds of
recurrence due to the positive margins are compounded by his more
aggressive cancer. That's hard to quantify even hypothetically because
most studies and nomograms lump us G8-G10 cases together, but it does
potentially increase the numerator -- the possible benefit -- of Steve's
ADT therapeutic index and may render RT a non-option for him if it leads
to mets.

My PSA was zero post-op and although it's creeping into the second
decimal place after a year of ultrasensitive zeros, it's still zero on
the old non-ultra scale. That doesn't give me a lot of incentive to
undergo RT or ADT. Marinara sauce and salsa, no sweat, but radiation
and/or chemical castration ... nnnnnnot so eager until I see indication
the surgeons missed something. Steve already has not only indications
but proof they couldn't get it all, so he already knows much more than
my docs do even 17 months post-op.

And last but by FAR from least, ADT is virtually certain, according to
the vast majority of professional sources and a poll of this forum's ADT
pts, to ruin my QOL on several accounts which explain my personal
reticence to undertake it:
1. My life is all about 16 hours a day of high levels of physical and
mental activity. Every source virtually guarantees the former is over
and the latter is highly likely to be compromised with ADT.
2. My time is MINE, ALL MINE (not some employer's, since I'm long since
retired). I'd be a lot more willing to sacrifice an employer's time to
the beast, but I'm not giving up MY time so willingly. And now that my
wife has retired, my time is also OUR time, and we don't want to
sacrifice it by grasping at straws with no indication of cancer.
3. Which brings up a corollary: I have yet to see any indication that
ADT would add any conscious time to my life in return for its highly
negative 24/7 QOL impact. Even our most ardent ADT supporter admits it
makes him spend half his life unconscious (aka sleeping), so --
literally -- what's gained but SEs (at least until it IMPROVES one's QOL)?
4. I've always been in my wife's face, despite the fact that she's never
deserved it. I want to tone that down rather than ramp it up, and most
sources agree ADT changes even Mr. Milquetoast into an ogre -- except
when he's bawling because his shirt button came undone.
5. Which reminds me: hot flashes. I *HA*T*E* the freaking heat!!! When
our bedroom temp rises into the 60s, I wake up miserable. I lost a lot
of sleep in just the few weeks I sampled ADT in midwinter. 56 degree air
temp plus even a mild warm flash = get out of bed, cool off, hope the
bed isn't sweat-soaked, and make up the sleep later.

And that's just the fairly certain tip of the ADT iceberg. The "lesser"
(i.e., 40-60% probable) SEs are a whole 'nuther suite of potential
hassles ranging from quite treatable to no way in hell. Fairly likely
example given my extensive osteoarthritis: chronic pain -- maybe even up
to broken-bone-level -- in my neck, my fingers and thumbs, R knee, L
hip, and L elbow.

I'll examine the picture when my cancer reaches the stage Steve's is at
right now -- known escaped aggro PC cells and maybe post-op PSA -- but
I'm guessing I won't accept ADT until it would IMPROVE my QOL. Right now
it wouldn't, and the numbers say RT isn't likely to help me, either.

Somebody PLEASE tell me where I'm wrong. I don't want to just give in to
 this thing, but so far I just don't see a viable alternative worth its
statistical downside picture as painted by Strum and virtually every
other body of research and every son of a buck in this forum, and thus
can't conscientiously recommend it to others without strong
reservations. I certainly don't advise against it, but it certainly
warrants close examination, especially for active people with a high QOL.

On the bright side, give it a shot. Unless Steve's old enough that his T
is unlikely to recover, there's little risk unless his docs fail to
prevent osteoporosis. He may find ADT has minimal SEs for him, some
people gain much more time than the average 6-8 months, one pair of docs
sez the medical world's 6-8 months' benefit could be pessimistic, and
most SEs are reversible when T returns.

I.P.

Hi Laurel...Sounds like you have the outline of a good plan already.
HT is confusing as you noted in your second post.  Getting an
oncologist who specializes in PCa is a key in my opinion.  You've seen
the names here before (Strum, "Snuffy" Myers [he has PCa himself], Don
Cooley's site lists more "artists"...I'll add Dr.Leibowitz's name too,
somewhat unconventional in terms of therapy, but his [somewhat limited]
results to date are striking.  Even if none of these docs are close by,
typically you can visit for an intial face-to-face consult and then
work remotely with him through a local oncologist or uro.  There is
little evidence to suggest that one flavor is better than another.
Here are a couple of things I've noticed from reading posts:
1.  Continuous vs. intermittent ADT - both camps claim their approach
is the best and both can provide small studies that seem to support
their positions.  I think the arguments in support of better outcomes
with IADT may be a bit stronger, but only time and more studies will
tell.  Certainly QOL is better with IADT.
2.  Back before LHRH agonists were available, oral estrogen therapy was
the hormonal therapy practiced.  It's primary drawback was the
increased incidence of thrombotic events (it is a heck of a lot
cheaper).  Over the intervening years, HT as applied to women has led
to an evolution in estrogen therapy and it is now available in patches.
Transdermal absorption, rather than oral, bypasses the liver and
significantly reduces the number of cardiovascular events.  Estrogen
therapy also produces a much better QOL with reduced SEs and actually
helps maintain / improve bone density.  There are a number of recent,
favorable published studies with estrogen therapy for PCa.  It seems
that more men are beginning to consider it as an option and go on to
practice it.  Jacquie Strax at PSA-Rising has recently written a nice
review that can be found at

http://psa-rising.com/med/hormonal/estradiolpatch5.html

3.  Another anecdotal observation (and it's only based on a few
observations) without any evidence to support it - men who rotate
therapies and drugs before they become unsuccesful, seem to be able to
maintain their androgen dependent state for considerable time.

I'd suggest that Steve get a baseline bone mineral density test if he
hasn't already done so.  Did you also get that PAP I mentioned sometime
back, that would be a nice baseline marker too.  Finally, there's a lot
of newly diagnosed traffic at this site.  If you haven't already, you
might want to take a look at a few sites for men with more advanced
PCa, where men who have "been there and done that' can offer some
guidance.  Some sites to consider include:
Don Cooley's advanced list (he also has a ladies only list)
http://groups.prostate-help.org/grsubsc.htm

The Prostate Problems Mailing List
http://ppml.acor.org/index.html

The Hormone Refractory PCa website
http://ppml.acor.org/index.html

I hope this is of some help.  We are all traveling the same road.  I
wish you and Steve all the best...Best wishes and good health, Ron