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From: BSD guy on 28 Jun 2007 22:47
All --

I'm a 40 year Crohns patient who's had an ileostomy for 25 years. Six
years ago, I had a total proctocolectomy performed because of
suspicion of colon cancer in a difficult to survey spot. Since I'd
had the ileostomy for such a long time and entertained no real
thoughts of getting it reconnected, the decision to have this surgery
was kind of a no-brainer. There was some discussion with my surgeon
as to whether to leave a rectal stump to make prostate cancer
detection easier. In the end (literally), the then-current risk of
colon cancer as well as the risk of cancer in the rectal stump seemed
great enough that I went with the total proctocolectomy.

As things turned out, colon was negative for cancer. Naturally, my
PSA started spiking two years later. Four biopsies and thirty
some-odd samples later, I finally got a diagnosis of prostate cancer.
My local urologist said the proctocolectomy rules out a number of
treatment options leaving, basically, external beam radiation or
radical prostatectomy. Wondering if anyone else here has been in the
same situation and what you wound up doing. Urologist is leaning
towards surgery over radiation due to age (51) and relatively good
numbers (total PSA 6.9, free PSA 9%, Gleason score 6, PSA doubling
time in the neighborhood of four years). He suspects multiple
previous surgeries for Crohns will make the RP harder rather than
easier and I tend to believe him. Ideas???


--
BSD guy
From: chasjac on 29 Jun 2007 10:59
Hello, BSD guy:

Hello, BSD guy:

The Crohn's started when you were a kid? Damn, but you've had it
rough.

Anyway, welcome to the group. I cannot comment on the intestinal
part, but offhand, your numbers look good for either surgery or
radiation.

It's not a surprise that your urologist leans towards surgery. You
should consult with a radiation oncologist about radiation
treatments. There are several men here who have had good results with
radiation.

If your uro has not mentioned laparoscopic and/or robotic surgery, you
might want to check it out. I assume at least part of the issue with
another surgical procedure is the scarring, and the laparoscope would
mitigate against that. Less blood loss, too.

Whatever route you go, be sure to shop for a really good surgeon or
rad onc. The more experience they have, the lower the chances you'll
deal with side effects later.

If you haven't already, you should start reading up in prostate
cancer. Good sources are:

The Prostate Book, by Peter Scardino and Judith Kelman
Prostate Cancer for Dummies, by Paul Lange and Christine Adamec
A Primer on Prostate Caner, by Stephen Strum and Donna Pagliano
The Prostate, By Patrick Walsh and Janet Worthington

And please keep us posted on how it all goes.

--charlie


From: Alan Meyer on 29 Jun 2007 13:45
Man have you been through the mill!

> ... He suspects multiple
> previous surgeries for Crohns will make the RP harder rather than
> easier and I tend to believe him. Ideas???

Your case is so specialized and different that there
are probably only a few doctors, much less lay folks
like us, who are qualified to comment on it.

The standard advice that people give before choosing
a treatment option is as follows:

1. Consult with more than one kind of practitioner. See
both a radiation oncologist and a surgeon.

2. Try to find the very best, most experienced person
you can for the actual treatment.

I should think those prescriptions apply for your case too.

> BSD guy

As in Berkeley Software Distribution? Are you one of the
team that put together BSD UNIX? Any connection with
Apple these days?

Alan


From: BSD guy on 30 Jun 2007 10:08
On 2007-06-29, chasjac <chjacobson(a)elmira.edu> wrote:
> Hello, BSD guy:
>
> Hello, BSD guy:
>
> The Crohn's started when you were a kid? Damn, but you've had it
> rough.
>

Undoubtedly must have PO'd someone in the worst way in a former life...

> Anyway, welcome to the group. I cannot comment on the intestinal
> part, but offhand, your numbers look good for either surgery or
> radiation.
>
> It's not a surprise that your urologist leans towards surgery. You
> should consult with a radiation oncologist about radiation
> treatments. There are several men here who have had good results with
> radiation.
>

Both my dad and a friend at work had radiation with good outcome.
Lack of a rectum rules out seeds or freezing for me. Crohn's may rule
out radiation, need to speak with a radiation oncologist about that.

> If your uro has not mentioned laparoscopic and/or robotic surgery, you
> might want to check it out. I assume at least part of the issue with
> another surgical procedure is the scarring, and the laparoscope would
> mitigate against that. Less blood loss, too.
>

The biggest issue with laparoscopic surgery (old fashioned or robotic)
is whether they can deal with all of the scarring and adhesions left
over from previous surgery. That's probably the biggest question I've
got for them.

> Whatever route you go, be sure to shop for a really good surgeon or
> rad onc. The more experience they have, the lower the chances you'll
> deal with side effects later.
>

Ideally, I'd find someone who has performed the procedure on hundreds
of patients in my situation. Very unlikely to happen but I'd like to
find someone who has done this surgery on at least one or two other
patients with a long history of abdominal surgery.

> If you haven't already, you should start reading up in prostate
> cancer. Good sources are:
>
> The Prostate Book, by Peter Scardino and Judith Kelman
> Prostate Cancer for Dummies, by Paul Lange and Christine Adamec
> A Primer on Prostate Caner, by Stephen Strum and Donna Pagliano
> The Prostate, By Patrick Walsh and Janet Worthington
>
> And please keep us posted on how it all goes.
>
> --charlie
>

I'm going to see my urologist in NYC on Tuesday to get his take on the
situation. Also going to see Dr. Samadi later in July. He just moved
from Columbia-Presbyterian to Mt. Sinai. Got his name from a
colleague at work because my colleague's wife has a nurse frend who
works with a local physician who had his PC surgery performed by
Dr. Samadi. Complicated six degrees of separation thing. Anyway, I
filled out the form on his web page and figured his office might get
back to me in a week. Don't know if my friend had already greased the
skids or whether this is just the way he works, but Dr. Samadi called
my house about five minutes later and left a message. He also sent an
email asking me to call his cell. Twenty minutes after sending in the
form, I was speaking with him on the phone. Will let you know how it
all works out.

--
BSD guy
From: BSD guy on 30 Jun 2007 10:19
On 2007-06-29, Alan Meyer <ameyer2(a)yahoo.com> wrote:
> Man have you been through the mill!
>
>> ... He suspects multiple
>> previous surgeries for Crohns will make the RP harder rather than
>> easier and I tend to believe him. Ideas???
>
> Your case is so specialized and different that there
> are probably only a few doctors, much less lay folks
> like us, who are qualified to comment on it.
>

Tell me about it.

> The standard advice that people give before choosing
> a treatment option is as follows:
>
> 1. Consult with more than one kind of practitioner. See
> both a radiation oncologist and a surgeon.
>

In progress.

> 2. Try to find the very best, most experienced person
> you can for the actual treatment.
>

Trying too subject to the uniqueness of my situation.

> I should think those prescriptions apply for your case too.
>
>> BSD guy
>
> As in Berkeley Software Distribution? Are you one of the
> team that put together BSD UNIX? Any connection with
> Apple these days?
>

<OT>
As in Berkeley Software Distribution. No connection with the BSD UNIX
team. My history of working with C and Unix goes back to 1977 or
1978. I've spent most of my career working at AT&T and have had the
occasion to speak with a few of the original Unix characters (Brian
Kernighan, Dennis Richie, Steve Bellovin) from time to time. Started
playing with Linux back in the early nineties. I was having a problem
with a particular SCSI controller and someone suggested using the
"other driver" from the FreeBSD system. That solved the problem so I
decided to try FreeBSD and that gradually became my preferred OS.
Everyone else was using Linux, so I became known as the "BSD guy".
Gradually switched back to Linux a couple of years ago. Never owned
an Apple.
</OT>

--
BSD guy
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