On December 20, Mike wrote:

(snip)

This is unlikely to be the end, or even the beginning of the end, though
without the test results it is impossible to say for certain.

I have three recommendations:

1. See the authoritative website of the Prostate Cancer Research
Institute (PCRI) at
http://prostate-cancer.org/index.html
...and start with the section “Newly Diagnosed.” There is much excellent
and objective information.

2. Meet the members of the local chapter of the support group UsToo!
International. There are four Hawaii chapters listed on the website at
http://www.ustoo.com/Default.asp
It’s a wonder how helpful face to face discussion with others —
including wives — who have been there can be.

3. Buy and study the best book (IMO) on the subject, _A Primer on
Prostate Cancer_ 2nd ed., by medical oncologist and PCa specialist
Stephen B. Strum, MD, and PCa warrior Donna Pogliano. It is available
anywhere books are sold and on the UsToo! and PCRI sites.

The better educated the patient, the more likely an optimum outcome.

Good luck. Keep us informed.

Regards,

Steve J

"Empowerment: taking responsibility for and authority over one's own
outcomes based on education and knowledge of the consequences  and
contingencies involved in one's own decisions. This focus provides the
uplifting energy that can sustain in the face of crisis."
--Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled
"The Empowered Patient's Guide."

Mike,

Welcome to the club for which no one petitioned membership.

I was in your shoes six years ago (10/17/2000) at Age 46.  I was married 25
years and had children.  As a matter of fact, if you look back through the
archives of this newsgroup, you will find that almost everyone was
devastated with their diagnosis, they were all scared to die, and most were
first concerned for their wives and or families.  In other words, you
dropped into a group of men just like you.

If you doc is telling you that the cancer has not spread, then you likely
have low numbers, like PSA <4.0, Stage of T1 or T2, and Gleason of 6 or 7.
We would like to know these numbers so we can best address your concerns.
Some may then tell you of the wonders of surgery and others will steer you
to radiation.  But none will do so without knowing the numbers.

In the end, we will all agree that you need to research, research, research.
This is a mind-boggling disease and you need to know the pros and cons of
each treatment and compare them to your priorities and realities.
Unfortunately, you will find that impotence, at least temporarily, is a very
good possibility.  So is incontinence.  But, for most, these are temporary.

Two things are certain:

1.    Your life just changed.
2.    You just made a whole bunch of new friends.

Hello Mike:
  You will get a lot of good advice here, part of which will be to
research all you can because once you make the decision there is no
turning back.  I had the surgery, and part of my reasoning was that if
there were to be a reoccurance I would have a second swing at the beast
with salvage radiation.  I have seen a lot of guys say that here.  But
you will also find a lot in the ng that had radiation and are doing
fine.
  In my case I somehow came out of the surgery incontinent and
impotent.  Now I had ED problems going in, so I cannot blame the RRP
for that.  I did have nerve sparing surgery btw.  I am 59 now and had
the surgery three years ago.  I was 55 when diagnosed.  Not
particularly happy about being impotent, but given the alternative I
would say I am satisfied.
  Good luck to you.  I hope it turns out so you can have a very Happy
New Year!
David S.

Mike, so sorry to hear this news. You're feeling the same thing I am
going through, DXed in Sep2006. I've done lots of studies/research and
contacted several doctors, and finally (I almost sure) that I will go
with SBRT at a local teaching medical center here. Like everyone says,
look up everything, decide which side effect bothers YOU most, and go
from there.

Be aware, of course, that you may suffer the side-effects of treatment, at
least to some extent.  Be aware, also, that you may come out of it pretty
good.  It is very important, as Steve and others have said, to do the
objective research, apply it to yourself, and then make the difficult
decision.  Make sure you discuss all this with your wife.  Always remind
yourself of the priorities, however.  Don't forget---corpses can't have
erections and have no concern for incontinence.  For most of us, destroying
the cancer through removal or radiation was primary.

Try to stay positive.  I, for one, had a good result, despite positive
margins.  I had an RP at age 64, one nerve spared.  I was basically
continent within 48 hours.  I don't have the same holding power that I did
before, but I can accomodate to that.  My erections returned within 6
months.  Suitable for a 69 year old, I believe, without Viagra, and a bit
better with.  Despite the positive margins, my PSA is still undetectable.
But don't put too much weight on any one person's experience.  Most people
who have been treated for prostate cancer are not in this forum.  You need
objective information and then application of that to your own emotional
base.

I suggest that you get Peter Scardino's book "The Prostate" and read
that.  You may also find Patrick Walsh's "Guide to Surviving Prostate
Cancer" useful.  Both these books describe the advantages and
disadvantages of the choices before you, surgery and radiation.  They
were written by recognized authorities in prostate cancer.  Both are
surgeons, but they give a balanced presentation of other alternatives,
including radiation.  Either treatment method is a possible choice in
your case.  But in the end you will have to rely on the medical advice
from your doctors since each case is different.  Also, keep in mind that
generalities about things like how likely impotence might be may not be
very useful.  The important thing is how likely particular outcomes are
with the treatments that are available for a man like you with the
practitioners you have available.  Ask your doctors about those
likelihoods if they treat you.

Some people like to recommend Strum's book and the prostate-cancer.og
website.  My feeling is that the information there might be more useful
if you were a candidate for medical oncology treatment, which appears
not to be the case.  In my opinion, Strum is an outlier, even among
medical oncologists.

I should also

That is understandable.  In fact, the risk of death in your case is very
small in the foreseeable future.  That would be true even if you did
nothing.  So try to calm down and understand the alternatives as
objectively as possible.

Keep in mind that even if you end up permanently impotent by virtue of
treating the prostate cancer, there is no reason why you shouldn't be
able to resume your sex life.  After you recover from the treatment, you
will still have normal desire and still be able to experience orgasm.
Impotence refers only to the ability to maintain an erection, but there
are a variety of mechanisms for dealing with that.

I was 67 when I had my radical prostatectomy, and the odds of my
regaining erections were at best 50 percent.  For 18 months following
surgery, I was impotent.  During this time I used a pump (vacuum
erection device) and my wife and I had intercourse at about the same
frequency as before surgery.  My wife was happy with the experience.
Many men find injecting medication in the penis, which is much easier
than it sounds, works very well.  And there are other alternatives.
After 18 months, my erections started to return, and now I can sometimes
manage with nothing, but I usually use Viagra.

In your case, if your doctors are skilled, your chances of not being
permanently impotent are a lot better at 55 than mine were at 67.   So
don't assume you will necessarily remain impotent, and remember what I
said above.   Where there is a will there will be a way.  So don't let
the possibility of impotence deter you from treatment.

Your feelings are quite natural under the circumstances, but objectively
speaking, the situation is not nearly so dire.  I don't know the details
of your diagnosis, but typically a man like you has an excellent chance
of a cure and the side effects of treatment are manageable.

Good luck in whatever you decide.

Hi Mike,
Welcome to the club that no one wants to belong. I'm so sorry you are now
facing prostate cancer. (PC or PaC We use lots of acronyms so don't be
afraid to ask if you don't know what something is) First of all this is a
treatable cancer!

At age 55 you are a fence sitter as most older men have a slower growing
cancer and younger men tend to have fast growing cancers. There is no way to
determine which you have right away.

If you have any numbers it would help to post them. If you don't have the
numbers than call your doctor and ask for them. You will probably have a PSA
number, possibly a fPSA or free PSA and that normally is a % and a Gleason
score which is three numbers such as 6 (3+3) or 7(3+4) the order of those
numbers in the brackets is important.

There is something called brachytherapy or seeds or radioactive seeds. The
seeds can be implanted directly into the prostate. It has fewer side effects
with virtually no time lost from work. If done correctly it will destroy the
cancer and the prostate. But not every man is a candidate for this
procedure.

As for impotence it can happen with any procedure including brachytherapy.
It happens less often with brachy, in fact it is considered to be rare. My
husband fell into the rare category and has fought with impotence.

No matter which method you chose you are apt to be dealing with it (ED) but
you must realize that it is also treatable. The most common method is to use
Viagra, Cialis or Levitra. There is a pump (VED) and then there are things
such as Muse or injections. And when all else fails there is an implant.

You have one thing in your favor going into this situation. You obviously
have a good sex life with a loving partner. You will get through this. You
might have to work at it a bit more (or a whole lot more) but sex will
continue. No matter which treatment (Tx) you choose you are apt to face
problems and you will lose your ejaculate. You will have what is known as
dry orgasms. Some of the guys don't like it, some have no problems with it,
some will say it is less intense and some will say it is more intense but
they will all tell you it is different. The other thing is, you don't have
to have an erection to have an orgasm. That can be a real shock for some.

Take some time and explore your options. I'm not saying to take a year to do
this but several weeks is not going to make a big difference. Be certain
before you choose. You need to choose a treatment and a doctor. For instance
brachytherapy needs to be done by a specialist that has a good track record.
(Ours has never had a failure and has been doing them since 1989)

You need to see at least two doctors - a  urologist (uro) (RP) as they do
surgery and a radiation-oncologist (rad-onc) as they do radiation (RT) and
brachytherapy (brachy). These two groups are filled with subspecialties. If
I try to name them all I will skip something . There is a radical
prostatectomy (RP) that's where they rip the prostate out and hopefully all
the cancer with it. That gets divided into several ways of doing it such as
the RRP , the LRP and now the new robotic procedure. Radiation is also
divided by the type of equipment used and there is a dozen or so procedures
such as basic RT to proton beam and in between there are several more but
mostly they fall under IMRT. And then there is brachy under the RT.

Do your research. If you have questions there's usually someone around here
who can say they've been there and done that.

As for the stress of the situation. I think I cried for a couple of weeks. I
was scared of losing my husband. I'd look at him and start to cry. He'd kiss
me and I'd start to cry. (And I'm not a crier!) But the thought of losing
him was too much.

We did do something that I will recommend. Once you have all your
information and you are at the point of making a decision - get out of
Dodge! Do not go to the in-laws! Get and B&B or a motel/hotel. Go camping.
Go to the mainland . Go someplace!!! Talk and talk some more and make a few
memories - pretend you are 22 again and mate like bunnies. It's your body so
it is your decision but it is important to know that your wife is 100%
behind you decision.
Bev (wife of 4 1/2 year PC survivor: brachytherapy with RT on IMRT, May
2002)

Hello, Mike:

I know just how you feel.  I was diagnosed in August, and it was all
pretty overwhelming.  I did the research I needed to make a decision,
including asking for some help on this newsgroup.  I've stayed on,
lurking for the most part, as I learn a lot from reading the thoughts
of the other posters.

I had a laparoscopic radical prostatectomy at Johns Hopkins in
November. I was in the hospital for two nights, and on a catheter for a
week after.  It is not a time I'll remember with fondness, but I got
through it.

I am both impotent and incontinent at the moment, but it has been only
five weeks, and I am noticing that I am slowly regaining some bladder
control.  I expect that erectile function will take longer; at least
that's what my docs tell me.  But my wife and I have already resumed a
sex life that includes orgasms for both of us.  It's very therapeutic.

I chose surgery because my numbers were right for it, the potential
side effects of radiation (seeds or beam) were scarier to me than the
side effects of surgery, and I wanted to know as soon as possible if
there was any spread.  But I almost chose to go with seeds, and see the
sense of it for those who go that route.

I've heard good stories and bad about both surgery and radiation.
Stories are shaped as much by a man's expectations as they are by the
actual outcomes.  If I don't get any better than I am right now, I'll
be fine with it, but another man might find it intolerable.  All we can
do is to make the most informed decision possible, hope for the best,
and accept what comes.

My wife has been an absolute rock for me the last few months.  She has
been involved in my visits to urologists, surgeons, and radiological
oncologists; she has been supportive of my decisions; and she has been
a willing participant in helping me deal with the recovery and the side
effects.  As traumatic as all of this has been, it has convinced me
that I made the best choice of my life 18 years ago when I married her.

Mike, I hope this is helpful to you.  You and your wife will get
through this together.  Please let the newsgroup know how it turns out.

--charlie

Thank you so much to everyone who replied with advice and
encouragement. I will try to reach my Dr. today to obtain the
specifics of my pathology report and I will post them here. I am new
to newsgroups so I am not sure if I always return to this thread with
my posts or if I start another thread. Either way, I look forward to
participating in this group. Again, thank you. It means so much to me
to have others to talk to who understand what I am going through.

Mike

Hey mike, Aloha-nui, brah!

Well, the bad news is that you ARE going to die.   That's guaranteed.

What isn't guaranteed, in fact it's unlikely that prostate cancer will
kill you if you receive quality treatment.   Depending on the stage of
your disease and other factors, it's better than 90% that the prostate
cancer won't kill you.

If you go RP, get the best surgeon you can find.  I'm sure  there are
great ones in Hawai'i.

If you go rad, check out TRILOGY and seeds.  The TRILOGY is a
next-generation IMRT and is an amazing toy.

She won't.

Either RP or rad, if you are potent now, you have a good chance of
being potent after treatment and a healing period (perhaps a year or
two).

Most likely, you'll come through with some impairment.   Don't let
anyone kid you about that.  Most guys lose something, some loss of
libido, feeling, orgasms aren't as good, many need help from Vitamin-V
to, er, catch-the-bone, some have to use injectable drugs like MUSE.

Some guys are an inch or two shorter after surgery.  If you're like the
typical Hawai'ian, your 9 inch penis may end up only 7 inches long.
The good news is that you won't have to tie a knot in it to keep the
tip from hanging out of your trunks.

Just about everyone has dry orgasms, that means no semen.   The stick
twitches, it feels good but nothing squirts out.   There's variation
here.  I squirt-dribble.  It's not so bad.

There's a real temptation to avoid or delay treatment.  I don't think
that's a good idea because as the disease advances and evolves, it can
become untreatable.   At that point you're fighting a losing war.

Look up Lamar Hunt, a billionaire who died of prostate cancer.  I think
he avoided treatment until it was too late.

For now, have as much sex as you can.  Not just once or twice a day,
Hemmo-skin, 3, 4 times a day.

-kh

For those that asked, here is a brief medical history:

10/26/01  PSA 4.7  Biopsy Negative
3/1/02  PSA 5.1 Biopsy Negative
8/1/02  PSA 6.9
3/4/03  PSA 9.1 Biopsy Negative
9/5/03  PSA 8.1
3/19/04  PSA 6.3
9/28/04  PSA 5.8
11/20/05  PSA 6.0
5/16/06  PSA 6.6
11/15/06  PSA 13.8  Biopsy Positive  Stage T1-C  Gleason Score 6

Out of the 30 punches taken during the last biopsy, Cancer was
detected in 40% of one punch. I have since had a CT Scan, Bone Scan
and full blood work but nothing appears to be out of the ordinary.

I continue to be sexually active and have absolutely no problems with
ED at this time. The thought of pumps or pills in the future does not
bother me, but I may have to draw the line when it comes to sticking a
needle in my penis.

Thank you all for sharing, and for caring. Happy Holidays.

Mike

Mike,

I haven't been on this site for a long time.  I had my rp over two
years ago.  I can't say it was fun, but I was up and about in a few
days.  No reoccurrance of cancer.  No problems with incontinence after
a short time.  And no problems with ED.  I sometimes take Cialis, but
sometimes don't.

I am probably one of the luckier ones.  But I think there has been a
lot of progress in this area.  I would be willing to discuss on the
phone with you if it would help.  Please e-mail me if you would like to
talk.  I'm not on this site regularly.

Regards

Phil
monsterbassgroove@yahoo.com