Hi, I was dx'ed  a few months ago and will be starting my RT in the
next couple of weeks. I've done a lot research for RP, RT and its
flavors, HIFU, CRYO, and even Tookad and have talked to several of
these reserachers.  I finally decided last month to go ahead wth the
high dose RT ( SBRT protocol). This is a new version of IMRT/IGRT that
has much less fractions but much higher dose and beam precision, so I
am quite certain that it will work as well as the current RT standard.
I suggest that you talked to several surgeons and radiation oncologist
before deciding on anything. And of course weight the SEs and decide
which one is more acceptable to you.

Hello Surf Dog,
I was 49 when DX;d. I have 2 sons...one a graduate from Stanford.
I had similiar diagnosis.....I veered from radiation.
radiation causes damage to other parts.
I did get Lupron, shot, waiting for Radiation...
I decided to find other Dr.s, get some ideas.
I ended, with Dr. James D Brooks.
I had RP 1999.....
I am totally functional, work hard, and do use 1/3 of  a 100mgs pill for
erection.
Other than that, I do not pee myself...
I lost 1 set of nerves......
I am ED functional.....with or without help.
The decision is yours....
I prefer RP
Radiation does affect other aspects....really.
Good wishes.....
Sorry for the diagnosis.....
I was dx'd 1999
I have had PSA test and 0.01 or less for 7 years.
Just my two peanuts...all I have.

While I can't answer your questions, I would like to welcome you to
the group.

Mike

Diagnosed with PCa 11/2006 at age 55
PSA 13.8  Gleason 6 (3+3) T1c
da Vinci RLRP planned for Feb 2007

Surfdog, sorry you have joined our club. But fellows like you (and me) with
moderate Gleason and PSA scores have to remember:  YOU HAVE TIME! Prostate
cancer generally progresses very slowly. Yes, there are exceptions, and you
need to be on top of it with PSA tests every three months, color doppler
ultrasounds a couple of times each year, etc. But you can take at least a
few months to educate yourself about the options -- surgery of several
types, radiation of several types, heat, cold, even doing no active
treatment (watchful waiting or active surveillance) for some time. You
probably should talk to several doctors who specialize in the different
treatment approaches, so you can get an informed opinion about each. You
also want to find out who the "artists" are in the treatment option you
eventually select. Nature cleverly buried the prostate in a godawful
inconvenient location, and doing the best job of cutting it out or frying it
with radiation takes a very skilled hand. Find yourself a "center of
excellence" in prostate cancer care in your area.
Keep hanging out here. You'll get a lot of help from an amazing group of
guys (and gals!)

Alex

low numbers.  Good.

If you're leaning toward radiation, also look into seeds and the
Trilogy.   I was diagnosed "too early" for the Trilogy but it's the
next generation IMRT.  This is the machine that tracks your movement
and breathing and adjusts the beam to compensate.

This lets them amp up the dose while reducing the side effects even
more.

-kh

Welcome to the club, Jeff.  Based on your post, that you have already
researched the disease, you know that these numbers are pretty good and that
your age leaves open the whole gamut of treatment.

It looks like you have been taking care of the most important step in taking
out this bastard -- research.  Most of us here have a very high regard for
our doctors, but then a few have been less served to the point of eventual
death.  It is great to have a doctor you trust and research will give you a
basis for that trust.

There are only two people that I have seen pass through this newsgroup that
have tried Proton therapy.  I have not seen the Dennison here in years.  I
last saw Keith about a year ago, I think.  I don't know if their addresses
are still good.  Keith's PSA numbers were on a downward trek until he
stopped reporting them.  I don't know about the Dennison.

     wborglum@sbcglobaldot.net Desert Denizen
     keith340@webtv.net Keith Lundy

Hi surfdog,

We're also in Houston and spent three months researching and talking to
doctors about Larry's options.  Proton therapy was definitely one that we
were interested in.  We went to MD Anderson and had a very long meeting with
Dr. Deborah Kuban, Professor of Radiology Oncology, Program Director and
Section Chief.  She was very thorough in her tests and Larry reported that
she had long fingers and could reach everything.  After about an hour
chatting with her she basically steered us away from radiation.  Larry was
59 when he was diagnosed and she thought the better choice for him was RRP.
The one reason that stuck out in our minds the most was that once you have
radiation, that's it.  You can't have it again.  So if the cancer returns
you have to have surgery and at that point, everything the radiation has
touched has turned to a 'gel like' substance and is very difficult to get
out.  She also said that if that happened, being incontinent forever would
be guaranteed.

We decided to not take that chance and went back to Dr. Brian Miles in the
Scurlock Tower -- he operates out of St. Luke's and Methodist and is
attached to the Baylor system -- and Larry had RRP this past Sept.  Dr.
Miles was instrumental in developing the bladder suspension for men and also
very involved in different studies.  The man is good!  Larry is 100%
continent and has been since the day the catheter was removed, and with a
little help from viagra, is back to normal in the erection department.  (And
he had 30% of the nerves on the right side removed and re-built.)

Continue with your research and you'll come to the best decision for you,
and that's all that matters.

Jean & Larry

Thank you all for your responses!  In fact I have to say that I am
really overwhelmed by the kindness and sensitivity of all your
responses. Not feeling alone is a great comfort.

I will continue to collect data and will share this with the group as I
can. Thanks again!

surfdog wrote...

Take a look at the following paper;
"Proton therapy for prostate cancer: the initial Loma Linda University
experience"; Int J Radiat Oncol Biol Phys. 2004 Jun 1;59(2):348-52;
Slater JD, Rossi CJ Jr, Yonemoto LT, Bush DA, Jabola BR, Levy RP, Grove
RI, Preston W, Slater JM.

It will give you some idea of how proton therapy has performed over an
extended period of time.  The data is stratified by disease
characteristics, check the outcomes for men with your characteristics
and compare the results to those obtained using other forms of
radiation therapy (RT).  Comparison to surgical outcomes is a bit less
straightforward.  External RT treatments (XBRT) as well as seeds
(brachytherapy) use the ASTRO defintion of failure (DOF) to identify
those men who fail biochemically post-treatment.  Surgery and [seeds +
XBRT] usually use PSA>0.2 ng/ml as the DOF.  Using other studies one
can compare ASTRO results with PSA>0.2 results, but as I said, it's
less straightforward.  More meaningful than biochemical failure studies
are PCa--specific mortality studies.  Several of these mortality
studies have now appeared.  Ask your doc about these studies and how
the various treatment modalities compare.  I haven't seen proton
specific data, but places that practice proton, must have this
information compiled; ask to see it.

A few other points to be aware of, most proton patients (at least at
Loma Linda) were actually treated with protons and photons, you might
want to see what your treatment would actually consist of.  Second, you
are a relatively young man, this means that, with a successful outcome,
you could have 30 years or motre in front of you.  Secondary cancers
from RT are something to be aware of.  They occur at the 1-3% level 10
years post-treatment.  Based on bomb-blast survivors the number may
increase further and should peak in the 10-20 year post-exposure time
frame.  Just another factor for younger men to keep in mind and discuss
with their doc...Best wishes and good health, ron

Surfdoc,

Sorry to hear of your diagnosis.

I personally chose radiation (HDR brachytherapy with additional
external beam) for my Gleason 7 cancer and, so far, three years
later, I'm still happy with the outcome.  However there are many
people, including many doctors, who believe that men our age
should have surgery rather than radiation, possibly out of fear
of secondary cancers, desire for a second shot at treatment if
surgery fails, or a belief that if you remove the prostate
(assuming the surgeon really gets all of it and there is no
cancer beyond it) you don't have to worry about whether any
cancer cells in the prostate remain viable.

But I knew that when I chose radiation.  There are arguments on
both sides.  Personally, I was very disturbed by the idea of a guy
with a knife mucking about in my innards, and worried about what
could go wrong if he was having a bad day.

If radiation appeals to you, one thing that you might want to do is
get a second opinion on your biopsy slides.  The reason for that is
that the kind of radiation prescribed for Gleason 7 or 8 may be
different from what is prescribed for Gleason 6.  It is very common
for one of the really expert labs to evaluate slides differently from
the standard, low bidder labs that most doctor's offices use, and
to find more aggressive cancer than was initially thought.  That
happened to me, going from 3+3 at the first reading to 4+3 for the
very same slides by a more expert lab.

For more aggressive cancers, the radiation oncologist may also
want to use hormone therapy applied for a couple of months
before, during, and after radiation.

I don't know if any of what I just said applies to surgery or not.
I would think that if a surgeon removes the prostate, he will do
it the same way whatever the Gleason score.  But that's a question
to ask.  Hormone therapy, which I found to be rather nasty, is
not generally used with surgery.

As to side effects and rates of success, my non-expert opinion
is that both of those have a great deal to do with the experience,
skill, and commitment of the doctors.  I think I'd rather be
treated by a really good surgeon than a so-so radiation
oncologist, and vice versa for a really good rad onc.

When I did the evaluation, I came to the conclusion that
radiation was a better choice.  Looking back on it however,
I now believe that both techniques can work very well and
either can leave you in good shape vis a vis side effects,
if they are done well.

However, I am suspicious of proton beam therapy.  I don't
know that it has a long enough track record.  I also don't know
if any of the practitioners have had time to build up the skills
that experts have with the other therapies, or have had enough
feedback from years of followup to have a good sense of what
worked and what didn't work in their practices.

In theory, it sounds good.  Protons carry lots of energy and
deliver more of it without passing all the way through the
patient.  In practice I don't know if that energy does the same
kind of damage to cancer DNA that xrays do, and if it's not
the same, whether it has an equivalent anti-cancer effect.

Good luck.

   Alan

Greetings back at you, surfdog, and I, too, am sorry that you've got
PCa.

When you talk to the folks at M.D. Anderson, consider asking them for
references -- former patients who have been through the proton beam
treatment.  Some doctors do that. Now, they'll of course ask their best
patients for references, but you'd expect that anyway.

It looks like MD Anderson has some support group stuff for PCa
patients; the links are on their pages. In particular, it looks like
Man to Man meets at the campus.  Us Too meets at Memorial Hermann.
Probably you could find patients who have been through the proton beam
treatment as well as the other treatment options you're considering.
And most important, they could tell you what they think of the doctors
who treated them.

And please let us know what you decide, and how it all goes.  Good
luck!

--charlie

Your numbers are on the low side; you are "young" statistically; you
have an active lifestyle.  That describes me 4 years ago, age 52.

I opted for IMRT.  As another patient mentioned above, this treatment
(which was the cutting edge for RT then) has been further refined in
recent years, known as IGRT (Image Guided Radiation Therapy)

I felt that surgery with the low numbers was like killing a squirrel
with an elephant gun.  The new radiation protocols have substantially
similar cure rates to RP, and substantially superior negative SE rates
(zero incontinence, easily treatable ED).

You will have to consider the odds of recurrence and questions of long
term radiation damage to surrounding tissue.

But if quality of life is an important consideration, I recommend
IGRT.