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Medical Forum / Diseases and Disorders / Prostate Cancer / May 2007

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Treatment option queries

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RAY - 09 May 2007 19:08 GMT
First, I want to say that I've been reading the posts on this list for
several weeks now and the information shared here has been
invaluable.

My story to date:
I'm currently 55 years old.  In the spring of 2006, my PCP saw a bump
in my PSA from 2.7 in 6/05 to 3.3 in 4/06.  A re-test in 10/06 showed
a PSA of 4.3 and a free-PSA of 9%.  At that point, he sent me to a
urologist.  Shortly before the scheduled biopsy, I noticed a some
blood in my urine over a day or so.  My PCP sent me to have a CT scan,
which turned nothing up, and then a cystoscopy, which revealed a small
growth that the urologist identified as malignant.  I had surgery in
January to have the growth removed.  I then had my postponed biopsy in
mid-February; toward the end of that month I got the diagnosis of
prostate cancer (Gleason = 4 + 3 / staging = T2a).

By the way, if you'd have asked me 6 months ago about my risk of PC, I
would've said "about average."  I now know that as an African
American, I have a greater PC risk based on that alone.  And I
discovered after my biopsy that my father had his prostate removed
when he was about 70-I have no idea why; and since he passed away last
year, I can't ask him directly.  Also, around that time I found out
that my maternal grandfather died of prostate cancer.  Apparently,
some research indicates that the genetic vulnerability is carried by
the mother.  In any case, had I known all this 5 years ago, I would've
alerted my PCP to be extra vigilant re: PSA variations.

Since my diagnosis, I've met with a medical oncologist and a radiation
oncologist at UCLA (my HMO); the latter recommends IMRT, though he's a
bit concerned by my having been treated so recently for bladder
cancer.  On a trip east, I set up a consultation with Dr. Partin at
Johns Hopkins.  He recommended surgery (of course) but admitted that
current data suggests that RP and IMRT success rates are comparable in
terms of effectiveness.  (Partin also read my staging as T1a, a slight
distinction that my urologist disputes.)  My partner & I have been
digging through mountains of information on seeds (stand-alone), seeds
+ high-dose RT, proton RT, laparoscopic surgery, etc.  I currently
plan to get an endorectal MRI done at UCSF within the next week or so,
but both my urologist and the radiation oncologist I saw suggest that
the results from that test may not be conclusive.  I might consult
with the PRT folks at Loma Linda (I live in LA) but the waiting list
is pretty long.  In the meantime, I'm also seeing an alt-med doctor
(for acupuncture, core-heating, and nutritional supplements of various
kinds)--our primary goal is to strengthen my immune system and to slow
the tumor growth.

Over the next couple of weeks, I may go meet with a radiation
oncologist who works with seeds + external beam, but I'm most
interested in identifying some surgeons.  I feel that the doctor who
operated on my bladder did a good job;  however, I'd like to cast a
wide net in terms of identifying the best possible PC surgeon, should
I go that route.  Does anyone have any recommendations for surgeons in
the SoCal area (at UCLA or elsewhere)?  Also, are there folks I should
avoid?

Thanks for your advice.
Richard
Burney Huff - 09 May 2007 22:24 GMT
I'm sorry to hear that you had to join this group, Richard.  But, now
that you're here, "welcome".

You asked for advice.  I don't give advice, expecially on this group.
I will share my experiences in hopes that the knowledge may help
others.  I would like to offer a couple of observations, though.

First, you seem to be absolutely on the right track.  You have done,
and are continuing to do, whatever research is possible to learn about
the disease and how it affects you and what you might be able to do
about it.  We all have to make out own decisions based on whatever
knowledge we can acquire.  You're well along in that.  Keep it up.

Second, you have access to facilities that are far more renowned than
most of us in this group.   I don't know if an individual actually
gets better care; but, they are certainly better known.   So, there is
not much more you can do in that regard.

So, stay the course and satisfy yourself that you are making the best
decisions that you can make as you go through the process.  

Hopefully you can get this thing wiped out quickly and leave this
group forever.  I wish you the best.  

Burney

>First, I want to say that I've been reading the posts on this list for
>several weeks now and the information shared here has been
[quoted text clipped - 53 lines]
>Thanks for your advice.
>Richard
Alan Meyer - 10 May 2007 01:16 GMT
Richard,

Sorry to hear about your diagnosis, but it looks like you're
doing the right kind of research to maximize your chances
for successful treatment.

Here is one source of information about doctors:

http://www.cancer.gov/cancertopics/factsheet/Therapy/doctor-facility

It will direct you to other resources.  I don't know if they
are any good.

I have been told that surgery, like anything else, can be
greatly improved by practice.  The most successful
surgeons, all other things being equal (which they aren't
always) will be the ones who do the most number of
prostate surgeries.

There are surgeons out there who are do nothing else
but prostatectomies - as many as 200 per year.  Those
are the guys who have seen every imaginable prostate
and cancer combination and can often do the operations
with the best success rates for both cancer control and
control of side effects.

Personally, I would also want a doctor about whom I
have a positive gut feeling - someone who listens
carefully to my questions, takes time to answer, and
indicates that he is both careful and committed to his
patients.  But some would argue that that's just bedside
manner and it has nothing to do with outcomes.

As for the choice of surgery vs. radiation, it's a tough
one.  I chose radiation myself, but I can't say it was
a better choice, only one that better met my specific
individual circumstances and outlook at the time.

Best of luck to you.

   Alan
Paul - 10 May 2007 11:30 GMT
>First, I want to say that I've been reading the posts on this list for
>several weeks now and the information shared here has been
>invaluable.

With out a doubt, it has been for me as well. Good luck to you
Richard.
Steve Kramer - 10 May 2007 13:38 GMT
> I'm currently 55 years old.
> a PSA of 4.3
> Gleason = 4 + 3 / staging = T2a.

I applaud your efforts to date, Richard.  With PCa, so much rides on one's
initiative, ability, and tenacity with regard to research.  You are leaving
no stone unturned and, I suspect from your post, you have considerable
intelligence and education which should serve you well in the next month or
two.

As such, you have already discerned, no doubt, that your numbers are
definitely in the 'possibly cureable' range and your age allows you to try
almost any alternative available.  I am sure that you will come to a
considered conclusion that best fits you.

> By the way, if you'd have asked me 6 months ago about my risk of PC, I
> would've said "about average."  I now know that as an African
[quoted text clipped - 6 lines]
> the mother.  In any case, had I known all this 5 years ago, I would've
> alerted my PCP to be extra vigilant re: PSA variations.

I would not kick myself about it, were I you.  It sounds like  your PCP was
right on top of this one.  Blacks do have a greater chance of 'catching'
PCa, but once diagnosed, I don't believe any corelation to color has been
indicated.

If your father had PCa (and it could have been something else) at 70 years,
as I understand it, there is no corelation to PCa in you.  If the father is
young - mine was 42 years old - when diagnosed, then there seems to be a
corelation for a young son - I was 46 - getting PCa.

I don't think there is a corelation discovered between maternal
grandparents.  It is true that one strand of DNA that can cause PCa does
come from the mother.  So, who knows?

The salient point to be made is that you have 4.3 PSA, 7 Gleason, and T2a
(maybe) PCa at 55 years in the U.S. during 2007 and those are the only
criteria you have to deal with.

> Since my diagnosis, I've ...  [considerable research redacted]

Just an amazing account, Richard.  God willing, you'll do well.

Signature

PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA  <.1  <.1  <.1  .27  .37  .75            PSAD 0.19 years
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32                       PSAD .056 years
Lupron 07/03 (1 mo) 8/03 and every 4 months there after
PSA  .07 .05 .06 .09 .08 .132 .145       PSAD 1.4 years
Casodex added daily 07/06
PSA <0.04, <0.05
Non Illegitimi Carborundum

CW89134 - 10 May 2007 15:43 GMT
> Does anyone have any recommendations for surgeons in
> the SoCal area (at UCLA or elsewhere)?  Also, are there folks I should
> avoid?

Richard:

Have you checked out the City of Hope?

http://www.cityofhope.org/prostate

My husband was diagnosed in February 2007 but we chose not to go the
surgery route. Had we chosen surgery, however, we definitely would
have checked them out.

He is currently undergoing proton treatment at Loma Linda. I'm not
sure what the waiting list for consult is currently, but back a few
months ago it was about a month (or thereabouts) to get a consult
appointment and then another 2-3 weeks after the consult to start
treatment. My husband was fortunate in that they had a cancellation
for the consult appointment and he was able to get in almost a month
early. He started treatment on April 2.

Good luck.
chasjac too - 12 May 2007 00:12 GMT
Hello, Richard:

Like the others, I am sorry that you've had to join the group.  You are
certainly doing your research, and you'll choose the best treatment for
you.  
 
I had my surgery done at Johns Hopkins last November, and I've been happy
with the outcome.  It sounds as though you're going to choose someone on
the West Coast, but you had mentioned Partin, so I thought I'd mention it
just in case Baltimore was an option.  

As far feeling that you're catching this late ... I'm guessing you've been
making good choices about your health for awhile now, based on the best
information you had.  Given that you have the disease, those sorts of
choices are going to serve you well, now.  

Please keep us posted on your progress.  We'll keep you in our thoughts and
prayers.

All the best,

charlie

Signature

6/2006 PSA 5.2
          DRE suspicious
7/2006 Biopsy
          2 of 10 positive
          Gleason 7(3+4)
11/2006 LRP
           Clear margins
1/2007 PSA < 0.01
3/2007 PSA < 0.01
so far, so good

 
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