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Medical Forum / Diseases and Disorders / Prostate Cancer / June 2004

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Proton Therapy

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Cpflanagan3 - 05 Jun 2004 01:35 GMT
Hello.

I'm a new diagnosee.  

Age           57
PSA         12.3
Gleason    6 (3+3)
Stage        T1c
Size           ~37

Got the word a little over three weeks ago and then spent over two hours with
the urologist, discussing options.   (I got the feeling that he's really ready
to do an RRP on me, as soon as I come back in two weeks.)  He also gave me a
book to read, "The ABC's of Prostate Cancer" (I thought it was a little dated),
and suggested I get some other opinions.

So, I did/am.

Went to the internet and found some informative sites and this forum.  I also
bought two  books a little more current: "Surviving Prostate Cancer" (Walsh,
et.al.), & "Prostate Cancer Treatment" (Blasko, et. al.).

Since then, I've met with another urologist.  This guy laid it all out and
answered all my questions.  I couldn't tell which treatment he preferred until
I asked.  Then he said that either a RPP or Brachy would probably my best
options from him.  When I asked about Protons, he said he really didn't know
and that I should see a radiation oncologist.  He then referred me to an
experienced one he knew.

The rad guy said that he'd worked with protons, at Los Alamos, back in the
1980's, but as far as he could see, it hasn't proved itself yet.

My last "second opinion" (really my third) is scheduled for monday, when I go
up to Arlington, TX, to meet the Robo-Doc (RLRP).

Which brings me here.  Although I've found the Loma Linda site, and talked to
several people who have been treated there, I've been unable to find any
current "hard" data/studies/stats.

Can here anyone steer me onto something?

Chuck

"It's kinda like jumping with one chute....

You really want to be sure it's packed correctly."
Larry - 05 Jun 2004 03:09 GMT
Hi CP,
A sorrowful welcome.
Your profile is a bit sketchy. From what information you've shared, you
apparently had a biopsy of the prostate after an initial blood test that
revealed your PSA. Have they tested for mets to bone and lymph nodes? I
would guess a bone scan is in order plus a lymph node dissection. Then, your
options become a little more clear.

Quick thumbnail: My initial PSA was 14.4, Gleason 3+4, microscopic lymph
node invasion, bones clean.
Started Zoladex last February, completed five weeks of EBRT on May 14, seeds
scheduled for June 10 (by Blasko, who you mention).

Good luck!

Larry

> Hello.
>
[quoted text clipped - 42 lines]
>
> You really want to be sure it's packed correctly."
Cpflanagan3 - 05 Jun 2004 04:42 GMT
>Your profile is a bit sketchy.

Oops, left out the tests details.

Biopsy:  12 cores taken; 2 positive...1 less than 5%, 1 - 10%
Bone scan: negative
CT scan: negative
2 DRE's (separate urologists): negative

Chuck
Larry - 05 Jun 2004 14:45 GMT
Congratulations on the clean bone scan - what a relief. Something to hang
your hat on. I personally don't have a lot of confidence in the CT scan
being very conclusive. Microscopic amounts of cancer can still have spread
to the nodes and not be detected by the scan - just an observation based on
my experience. With me, they went in and found trace amounts in one node.
This spurred the decision to go with radiation. My urologist was promoting a
RP prior to this development. As for the DRE's, I passed my DRE's with
flying colors. Only the high PSA and low free PSA tipped them off that I
might have a problem, which subsequent tests proved I did.

Bottom line, you have a tough decision to make and only you can make it. Tom
is right. Once you make your decision, whatever it is, don't look back and
second guess yourself. With your numbers, you have a high probability of a
*cure* whatever that is whether you choose RP or combination radiation
therapy.

Good luck,
Larry

> >Your profile is a bit sketchy.
>
[quoted text clipped - 6 lines]
>
> Chuck
John Loomis - 05 Jun 2004 03:35 GMT
I would go with RP......With radiation, you have to be on Lupron, and that
is not fun.  It takes away the testosterone, the male aspect to you!
Your choice.  I went RP.  4 years ago.
I am fine.
You are young, and can get RP.
I am no Dr. and wish you a good chance to decide what may be best for you
Call me if you have questions...
> Hello.
>
[quoted text clipped - 42 lines]
>
> You really want to be sure it's packed correctly."
Cpflanagan3 - 05 Jun 2004 04:42 GMT
>With radiation, you have to be on Lupron,

Have to be?  

I haven't heard or read that that was always a given.

Chuck
Ron Carter - 05 Jun 2004 16:15 GMT
At 62 with a PSA of 4.6 and a Gleason 3+3, biopsy results similar to
yours (one core 10%, two less than 5%), I went with seeding at the
Massey Cancer Center in Richmond, Virginia.  Did not have to go on
Lupron nor have follow-up EBRT.  My understanding is that Lupron is
needed if the prostate is enlarged.  Mine was not.  As you already
know, though, this stuff is all controversial.  There are guys (AND
docs) who would argue that my treatment is insufficiently aggressive.
But I have a lot of faith in my radiation oncologist.  His track
record and experience are impressive.

Surgery is certainly a viable option with a proven track record.
Personally, I did not want the trauma and threat of incontinence.  And
from what I have seen, brachytherapy is just as effective (some would
argue otherwise).  But it's not free of side effects.  I've had some
urinary problems, complicated by a bladder infection.  Nothing
debilitating (although it came close).  I'm four weeks post-brachy
today with fingers crossed for another couple of months, then only
quarterly when it's PSA time.

Good luck with your decision.  Your numbers look promising.

Ron Carter

Ron Carter

> >With radiation, you have to be on Lupron,
>
[quoted text clipped - 3 lines]
>
> Chuck
John Loomis - 05 Jun 2004 16:58 GMT
Ask the oncologist, if that is his direction.  I went to see an oncologist
and the first thing they do is get you a shot of Lupron (3 month depo) to
shrink the prostate, make the target smaller, etc.
I got the shot at a urologist office for 1500.00 one shot, and then I
decided to get more info.  Went on to other Urologist and settled for RP
after 3rd opinion or 4th....
Lupron wore off after 3 or so months, and it was no picnic.....Shrunk
testicles, hot flashes, aches and joint pain, weekness........Anyway
sometimes it is a necessary aspect of treatment.
Wish you well. I had RP in 1999.  John Loomis

> >With radiation, you have to be on Lupron,
>
[quoted text clipped - 3 lines]
>
> Chuck
Danny McCarty - 08 Jun 2004 18:09 GMT
>Subject: Re: Proton Therapy
>From: cpflanagan3@aol.com  (Cpflanagan3)
[quoted text clipped - 8 lines]
>
>Chuck

I don't think it is.  Some say the Lupron makes the radiation more effective
and some use the Lupron to reduce the tumor mass- they wouldn't do my salvage
radiation until Casodex got the PSA down from 12 to 0.5
Ellis - 05 Jun 2004 08:47 GMT
*Your numbers are in the low grade range except the PSA>10.
Have you had a PSA retest to verify its that high?

*Another option is the RCOG place in Georgia.
http://www.rcog.com/home.htm
Radiotherapy Clinics of Georgia
"ProstRcision® (pronounced PROS-ter-ci-shun) means excision of
the prostate by irradiation. In concept, this is similar to
removal of the prostate by a radical prostatectomy, but no
cutting is involved, so the muscles that control urination
are not removed, and the sex nerves are usually not affected.
As a result, men do not have urinary incontinence, and most
sexually active men keep their sexual function. Moreover,
the cure rates for the ProstRcision treatment are at least
as good as those published for radical prostatectomies
(see Tables 3 and 4). "
----------------------

*Another way to go is with Cyberknife radiation, a Phase II
Trial at Stanford, CA. [5 days of radiation]. I just
completed treatment there 6 weeks ago.
http://www.cksociety.org/PatientInfo/MedicalConditions/prostate_cancer.asp

Ellis
========
> I'm a new diagnosee.
> Age           57
[quoted text clipped - 32 lines]
>
> Chuck
Tom C - 05 Jun 2004 12:12 GMT
Chuck,
Let me preface my comments with the fact that I'm relatively new here,
having been dx'd in Dec. 03 and there are a lot of great folks here with
more experience than me. That said, your test results seem to indicate that
the disease is confined, which makes you a candidate for the variations of
either surgery or brachytherapy. There seems to be a line drawn in the sand
between proponents of either therapy. Both treatments have similar track
records with respect to 10 year reoccurrence, when performed by skilled
practitioners. The side effects of either will differ, but, they will be
there, sooner or later, depending on your choice. A lot of men choose
surgery because they "want it out and gone". You've read books by  Walsh and
Blasco so you know their views. From what I've read and learned from others
in the past six months, the probabilities of incontinence and/or ED seem to
be greater with the surgical approach, Walsh's definition of freedom from
incontinence did not make me comfortable.
I was dx'd in Dec. with PSA 5.6, T1c, G 3+3-6, 10% of one core positive,
vol.~ 60cc, My Urologist, a surgeon that performs about 150 RRPs a year,
told me I was a candidate for either treatment. I opted for seeds, but due
to the large prostate vol. I've been on Lupron for 6 mos. to shrink it, a CT
scan last month indicated 23cc, for those results I can tolerate the Lupron.
Got Pd103 seeds this Tues. by a Blasco trained Dr., Foley for 2 days that
came out yesterday AM. Based on statistics, I may have some urinary
retention problem in the future, but history shows that these problems
resolve much faster with Pd 103 as opposed to I 125 seeds. I think John
Loomis is pretty much on track with his Lupron comment, it seems that most
brachytherapy is either accompanied by Lupron or external radiation.
It's a tough decision that only you can make, but once you make it, stick
with it and don't look back.
Here's wishing you the best.
Tom
> *Your numbers are in the low grade range except the PSA>10.
> Have you had a PSA retest to verify its that high?
[quoted text clipped - 57 lines]
> >
> > Chuck
ron - 05 Jun 2004 22:39 GMT
> ...which makes you a candidate for the variations of
> either surgery or brachytherapy...snip...Both treatments have similar track
> records with respect to 10 year reoccurrence, when performed by skilled
> practitioners.

Tom...You're right that there are several published studies claiming
that all major therapies have similar bNEDs at 8-10 years.  The most
recent paper along these lines was Kupelian's Cleveland Clinic study.
That being said, I think it extremely important to recognize that most
RP and RT studies use different measures of success.  RP typically
uses PSA>0.2 ng/ml as the defintion of failure, whereas RT uses the
ASTRO (or a modified ASTRO) defintion of failure.  Comparing bNEDs
based on these different definitions of failure is like comparing
apples and oranges.  Just because RP and RT have similar bNED rates in
a study, doesn't necessarily mean they ARE similar if different
definitions of failure are used.  If you met a space traveller who had
1,000 quatloos and you had 1,000 USD, would you necessarily have the
same amount of money?

A valid comparison that can be made is between RCOG's SI+EBRT failure
rate and Johns Hopkins RP failure rates, since they both use the 0.2
ng/ml PSA cutpoint to determine failure.  For low risk men (T1c,
PSA<10, GS<7) RCOG and Hopkins have similar published bNEDS...Best
wishes and good health, Ron
John Brockhouse - 06 Jun 2004 02:04 GMT
Group
Does anyone remember a frequent poster named Keith?.  I can't recall his
last name . He always signed off with his signature and date of Proton
Therapy at Loma Linda.  He was quite often promoting this treatment.
Think he was treated early part of 2003 and for some reason was not
scheduled for a PSA until November.  
  Maybe I missed something, but don't recall reading a post from him
for a long time. I feel he could give this gentleman some firsthand
information. Appreciate hearing from someone.
             Thanks,  John in OR
   
Steve Kramer - 06 Jun 2004 12:21 GMT
Kieth Lundy, I think.  He still around.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA  .1  .1  .1  .27  .37  .75
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA  .07 .05
Lupron 7/03, 8/03, 12/03, 4/04

> Group
> Does anyone remember a frequent poster named Keith?.  I can't recall his
[quoted text clipped - 6 lines]
> information. Appreciate hearing from someone.
>               Thanks,  John in OR
Beverley - 07 Jun 2004 18:51 GMT
Seems like they might have caught this just in time for you. It is important
for you to make an informed educated decision as which ever way you go you
will live with that decision. "Live" being the operative word. But just as
it is important to understand the different types of treatment it is also
just as important to look at who is doing it. Don't forget to do some
background checks on the doctors. Many doctors are well-trained and very
successful in their field.

Keith Lundy  I'm sure will fill you in on Proton Therapy at Loma Linda.

My husband had brachytherapy done at the Massey Cancer Center in Richmond
,VA Yes, same place as Ron Carter except about 2 years sooner than Ron's. My
husband had 25 EBRT treatments using an IMRT machine prior to his seeds. My
husband also did not want a RP and all the side effects nor did he want to
lose that much time from work or chance incontinence. So he chose
brachytherapy and then we went looking for a skilled doctor who did it.
Found one of the best within a 2 hour drive of us.
Bev

> Hello.
>
[quoted text clipped - 42 lines]
>
> You really want to be sure it's packed correctly."
 
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