Beginning the process

Well, beginning the process (post diagnosis) is kinda like
being thrown into the deep end of the pool at the 'ol YMCA.
With the addition of a blindfold, a boat anchor and
overshoes.

Thanks to everyone and your responses to my wife's earlier
post re: robotic surgery and integrative medicine. You guys
are pointing the way through the labyrinth.

At the urging of my Urologist and GP, I made an appointment
at Johns Hopkins. This was an adventure in and of itself. I
think it was when I recognized that it had taken me 10
minutes just to find a phone number to call (yes, the
websites are comprehensive and replete with valuable
information) but finding a direct path to services and
humans to provide same; is a carnival side-show.

After being transferred, placed on hold, queried,
quarrelled and questioned, I had an appointment with a
physician - in the not too distant future - March 20. My
wife, being the dutiful and talented researcher that she
is, did a little digging to find out that this Urologist
specializes in cancer of the bladder. Probably not the guy
I need to see.

Midway through my sojourn I asked the nice lady who was
taking my info, if she knew anything about the NCCN
guidelines. Specifically I was interested in 2 points which
I read in a brief on the new guidelines (which I found
thanks to you kind folks):

"These newest guidelines specifically address the
problem of there being no consensus on PC treatment,
and stresses that it is critical for doctors to spend
more time with the patient discussing the different
options."

"The new Guidelines also stress the need for a multi-
disciplinary approach to treating PC, and suggest
that the newly diagnosed patient be evaluated by a
team of specialists. They recommend that this become
standard procedure."

I tried to explain to the "induction professional" whom I
was trusting with my most valuable possession (not my life,
my SSN) that I felt strongly about the guidelines. She knew
nothing about them. Her job was simply to get me in the
system, and throw me to the next available Dr. on the
roster.

Now, when I was a kid, my first legitimate sales job was
selling cars. We used to run what was called an "up's"
system. All the salesmen would hang around on the showroom
floor, and we would take turns serving customers based on
who was "UP".

We live an hour from Baltimore, an hour from Philly and a
couple hours from NY. If I were going to be diagnosed with
PC, what better place in the world to be located? I can't
help but wonder how it must be for some poor schlub who
gets diagnosed in Southern West Virginia.

Sorry for the ramble. I guess I am entering the "Pissed
Off" phase of the diagnostic roller-coaster. Thanks for
listening.

Anyone who can point us to resources to cut through the
bullshit red tape, and/or deal with the spiritual/emotional
component; your recommendations are graciously accepted.

Quihana
Diagnosed PCa March 2007 at age 49
PSA 12.0 Gleason 3+3=6 T1c
Asymptomatic No Incontinence/ED

On Mar 8, 8:10 am, <quih...@yahoo.com> wrote:
[snip]
> At the urging of my Urologist and GP, I made an appointment
> at Johns Hopkins. ...
> After being transferred, placed on hold, queried,
> quarrelled and questioned, I had an appointment with a
> physician - in the not too distant future - March 20. My
> wife, being the dutiful and talented researcher that she
> is, did a little digging to find out that this Urologist
> specializes in cancer of the bladder [...]

My experience with them was very different. Did you try searching at
http://urology.jhu.edu/prostate/cancer.php?

--charlie

Quihana,
There is a light at the end of this long and dismal tunnel!
At first, especially at age 49(as well as older) you are hit with many
visions and thoughts about your diagnosis and the outlook for the future.
With going through the hoops, and jumping over the bars, you begin to
learn about the diagnosis and what a person can do concerning it.
I lived in a "small town" and my Urologist had not a bed manner when it
came to diagnosis and or treatment. He told me I was going to "die". (we
all do eventually)
When my wife came with me to see him and have a discussion about my prostate
cancer, I had tears in my eyes while going over the + and -. He actually
tossed a box of kleenex at me..........(hum)
He had options: removal of my testes.......(Wow)
External Beam Radiation( older machine-small town)(Oh...Oh) with hormone
therapy......RP not a choice.......
I chose external beam, and recieved a Lupron shot from my Urologist. Went
into his office one day, and it was dark, and he sat on the other side of a
large cluttered desk, and told me to take my drawers off and he picked up a
syringe on his desk and gave me the shot in his office.
Anyway with time on my hands, the internet, and this group(I had to wait
about 2 months prior to radiation-for the shot to take effect)
I decided to learn and fight! That was a turning point for me. I went on
to the "Big City" and found Dr.s that would take me in (Prostate Cancer
Specialist) The 1st Dr. said RP was right for me.......(Wow) I was
encouraged......
I decided to go to yet another Dr. I went to Stanford Medical University,
and met a wonder Prostate Cancer Specialist. He looked over my lab papers
and slides, gave me a DRI, and had an in-depth discussion with me. He said
"I can help you" and asked if I wanted to go through surgery. I said yes!
When he shook my hand to confirm this agreement, I felt a wave of emotion,
and almost healing go through my body. It was almost as I were electrified!
I walked out of his office.......Cancelled my Radiation appointment.........
That was in 1999 Oct. I was 49 also..........
This was my light at the end of a long tunnel.
I am fine, and get a yearly PSA test, and so far, it has been less than
0.01.....I am continent, and have a great Erectile Function with a small
dose of Viagra.
Good Wishes to you, and hopefully you find a similiar light at the end of
your long tunnel.
John Loomis
<quihana@yahoo.com> wrote in message
news:MPG.2059d54efd6dadb0989682@news.verizon.net.. .
> Well, beginning the process (post diagnosis) is kinda like
> being thrown into the deep end of the pool at the 'ol YMCA.
> With the addition of a blindfold, a boat anchor and
> overshoes.
>
> Thanks to everyone and your responses to my wife's earlier
> post re: robotic surgery and integrative medicine. You guys
> are pointing the way through the labyrinth.
>
> At the urging of my Urologist and GP, I made an appointment
> at Johns Hopkins. This was an adventure in and of itself. I
> think it was when I recognized that it had taken me 10
> minutes just to find a phone number to call (yes, the
> websites are comprehensive and replete with valuable
> information) but finding a direct path to services and
> humans to provide same; is a carnival side-show.
>
> After being transferred, placed on hold, queried,
> quarrelled and questioned, I had an appointment with a
> physician - in the not too distant future - March 20. My
> wife, being the dutiful and talented researcher that she
> is, did a little digging to find out that this Urologist
> specializes in cancer of the bladder. Probably not the guy
> I need to see.
>
> Midway through my sojourn I asked the nice lady who was
> taking my info, if she knew anything about the NCCN
> guidelines. Specifically I was interested in 2 points which
> I read in a brief on the new guidelines (which I found
> thanks to you kind folks):
>
> "These newest guidelines specifically address the
> problem of there being no consensus on PC treatment,
> and stresses that it is critical for doctors to spend
> more time with the patient discussing the different
> options."
>
> "The new Guidelines also stress the need for a multi-
> disciplinary approach to treating PC, and suggest
> that the newly diagnosed patient be evaluated by a
> team of specialists. They recommend that this become
> standard procedure."
>
> I tried to explain to the "induction professional" whom I
> was trusting with my most valuable possession (not my life,
> my SSN) that I felt strongly about the guidelines. She knew
> nothing about them. Her job was simply to get me in the
> system, and throw me to the next available Dr. on the
> roster.
>
> Now, when I was a kid, my first legitimate sales job was
> selling cars. We used to run what was called an "up's"
> system. All the salesmen would hang around on the showroom
> floor, and we would take turns serving customers based on
> who was "UP".
>
> We live an hour from Baltimore, an hour from Philly and a
> couple hours from NY. If I were going to be diagnosed with
> PC, what better place in the world to be located? I can't
> help but wonder how it must be for some poor schlub who
> gets diagnosed in Southern West Virginia.
>
> Sorry for the ramble. I guess I am entering the "Pissed
> Off" phase of the diagnostic roller-coaster. Thanks for
> listening.
>
> Anyone who can point us to resources to cut through the
> bullshit red tape, and/or deal with the spiritual/emotional
> component; your recommendations are graciously accepted.
>
> Quihana
> Diagnosed PCa March 2007 at age 49
> PSA 12.0 Gleason 3+3=6 T1c
> Asymptomatic No Incontinence/ED
>
>
>
>
>
>

On Mar 8, 10:15 am, "John Loomis" <jloo...@mcn.org> wrote:
> Quihana,
> There is a light at the end of this long and dismal tunnel!
> At first, especially at age 49(as well as older) you are hit with many
> visions and thoughts about your diagnosis and the outlook for the future.
> With going through the hoops, and jumping over the bars, you begin to
> learn about the diagnosis and what a person can do concerning it.
> I lived in a "small town" and my Urologist had not a bed manner when it
> came to diagnosis and or treatment. He told me I was going to "die". (we
> all do eventually)
> When my wife came with me to see him and have a discussion about my prostate
> cancer, I had tears in my eyes while going over the + and -. He actually
> tossed a box of kleenex at me..........(hum)
> He had options: removal of my testes.......(Wow)
> External Beam Radiation( older machine-small town)(Oh...Oh) with hormone
> therapy......RP not a choice.......
> I chose external beam, and recieved a Lupron shot from my Urologist. Went
> into his office one day, and it was dark, and he sat on the other side of a
> large cluttered desk, and told me to take my drawers off and he picked up a
> syringe on his desk and gave me the shot in his office.
> Anyway with time on my hands, the internet, and this group(I had to wait
> about 2 months prior to radiation-for the shot to take effect)
> I decided to learn and fight! That was a turning point for me. I went on
> to the "Big City" and found Dr.s that would take me in (Prostate Cancer
> Specialist) The 1st Dr. said RP was right for me.......(Wow) I was
> encouraged......
> I decided to go to yet another Dr. I went to Stanford Medical University,
> and met a wonder Prostate Cancer Specialist. He looked over my lab papers
> and slides, gave me a DRI, and had an in-depth discussion with me. He said
> "I can help you" and asked if I wanted to go through surgery. I said yes!
> When he shook my hand to confirm this agreement, I felt a wave of emotion,
> and almost healing go through my body. It was almost as I were electrified!
> I walked out of his office.......Cancelled my Radiation appointment.........
> That was in 1999 Oct. I was 49 also..........
> This was my light at the end of a long tunnel.
> I am fine, and get a yearly PSA test, and so far, it has been less than
> 0.01.....I am continent, and have a great Erectile Function with a small
> dose of Viagra.
> Good Wishes to you, and hopefully you find a similiar light at the end of
> your long tunnel.
> John Loomis<quih...@yahoo.com> wrote in message
>
> news:MPG.2059d54efd6dadb0989682@news.verizon.net.. .
>
>
>
> > Well, beginning the process (post diagnosis) is kinda like
> > being thrown into the deep end of the pool at the 'ol YMCA.
> > With the addition of a blindfold, a boat anchor and
> > overshoes.
>
> > Thanks to everyone and your responses to my wife's earlier
> > post re: robotic surgery and integrative medicine. You guys
> > are pointing the way through the labyrinth.
>
> > At the urging of my Urologist and GP, I made an appointment
> > at Johns Hopkins. This was an adventure in and of itself. I
> > think it was when I recognized that it had taken me 10
> > minutes just to find a phone number to call (yes, the
> > websites are comprehensive and replete with valuable
> > information) but finding a direct path to services and
> > humans to provide same; is a carnival side-show.
>
> > After being transferred, placed on hold, queried,
> > quarrelled and questioned, I had an appointment with a
> > physician - in the not too distant future - March 20. My
> > wife, being the dutiful and talented researcher that she
> > is, did a little digging to find out that this Urologist
> > specializes in cancer of the bladder. Probably not the guy
> > I need to see.
>
> > Midway through my sojourn I asked the nice lady who was
> > taking my info, if she knew anything about the NCCN
> > guidelines. Specifically I was interested in 2 points which
> > I read in a brief on the new guidelines (which I found
> > thanks to you kind folks):
>
> > "These newest guidelines specifically address the
> > problem of there being no consensus on PC treatment,
> > and stresses that it is critical for doctors to spend
> > more time with the patient discussing the different
> > options."
>
> > "The new Guidelines also stress the need for a multi-
> > disciplinary approach to treating PC, and suggest
> > that the newly diagnosed patient be evaluated by a
> > team of specialists. They recommend that this become
> > standard procedure."
>
> > I tried to explain to the "induction professional" whom I
> > was trusting with my most valuable possession (not my life,
> > my SSN) that I felt strongly about the guidelines. She knew
> > nothing about them. Her job was simply to get me in the
> > system, and throw me to the next available Dr. on the
> > roster.
>
> > Now, when I was a kid, my first legitimate sales job was
> > selling cars. We used to run what was called an "up's"
> > system. All the salesmen would hang around on the showroom
> > floor, and we would take turns serving customers based on
> > who was "UP".
>
> > We live an hour from Baltimore, an hour from Philly and a
> > couple hours from NY. If I were going to be diagnosed with
> > PC, what better place in the world to be located? I can't
> > help but wonder how it must be for some poor schlub who
> > gets diagnosed in Southern West Virginia.
>
> > Sorry for the ramble. I guess I am entering the "Pissed
> > Off" phase of the diagnostic roller-coaster. Thanks for
> > listening.
>
> > Anyone who can point us to resources to cut through the
> > bullshit red tape, and/or deal with the spiritual/emotional
> > component; your recommendations are graciously accepted.
>
> > Quihana
> > Diagnosed PCa March 2007 at age 49
> > PSA 12.0 Gleason 3+3=6 T1c
> > Asymptomatic No Incontinence/ED- Hide quoted text -
>
> - Show quoted text -

I was in a similar situation, 50 years old when I got the news. I also
was a car salesman ( long time ago), and was amused by your comments.
In the beginning I was in denial, but once I accepted what I had, I
aggressively sought out the best Doctors. I ended up with a surgeon
trained by walsh in NYC, at NYU medical center. I had a RP in 2001,
and have been cancer free, continent, and able to have erections with
a little chemical assistance. I am 56 now. So don't despair, you have
some time to seek out the best, Don't settle, ask the doctor how many
surgeries a year he/she does, my guy was doing 200.
There is hope and be grateful that it is probably early enough in the
diagnosis that you will have a successful outcome.
Dave

<quihana@yahoo.com> wrote in message
news:MPG.2059d54efd6dadb0989682@news.verizon.net.. .

> We live an hour from Baltimore, an hour from Philly and a
> couple hours from NY. If I were going to be diagnosed with
> PC, what better place in the world to be located? I can't
> help but wonder how it must be for some poor schlub who
> gets diagnosed in Southern West Virginia.
>
> Sorry for the ramble. I guess I am entering the "Pissed
> Off" phase of the diagnostic roller-coaster. Thanks for
> listening.
>
> Anyone who can point us to resources to cut through the
> bullshit red tape, and/or deal with the spiritual/emotional
> component; your recommendations are graciously accepted.
>
> Quihana
> Diagnosed PCa March 2007 at age 49
> PSA 12.0 Gleason 3+3=6 T1c
> Asymptomatic No Incontinence/ED



--
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
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32
Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05,
2/06, 6/06
PSA .07 .05 .06 .09 .08 .132 .145
Casodex added daily 07/06
PSA <0.04, <0.05
Non Illegitimi Carborundum

"Steve Kramer" <skramer@cinci.rr.com> wrote in message
news:45f080ec$0$24739$4c368faf@roadrunner.com...
>
> <quihana@yahoo.com> wrote in message
> news:MPG.2059d54efd6dadb0989682@news.verizon.net.. .
>
>> We live an hour from Baltimore, an hour from Philly and a
>> couple hours from NY. If I were going to be diagnosed with
>> PC, what better place in the world to be located? I can't
>> help but wonder how it must be for some poor schlub who
>> gets diagnosed in Southern West Virginia.
>>
>> Sorry for the ramble. I guess I am entering the "Pissed
>> Off" phase of the diagnostic roller-coaster. Thanks for
>> listening.
>>
>> Anyone who can point us to resources to cut through the
>> bullshit red tape, and/or deal with the spiritual/emotional
>> component; your recommendations are graciously accepted.
>>
>> Quihana
>> Diagnosed PCa March 2007 at age 49
>> PSA 12.0 Gleason 3+3=6 T1c
>> Asymptomatic No Incontinence/ED
>

What I MEANT to say, before I so hurridly hit the SEND button...

Your PSA is a tad high, but your age, Gleason and Stage are really good,
relatively speaking for surgery or radiation. I imagine it will be surgery,
but you need to make that decision yourself with lots of documented input.


>
> --
> 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
> EBRT 05-07/2002 @ 47
> PSA .34 .22 .15 .21 .32
> Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05,
> 2/06, 6/06
> PSA .07 .05 .06 .09 .08 .132 .145
> Casodex added daily 07/06
> PSA <0.04, <0.05
> Non Illegitimi Carborundum
>
>

quihana@yahoo.com wrote:
> I got] an appointment March 20 . this Urologist
> specializes in cancer of the bladder. Probably not the guy
> I need to see.

My initial appt was also with a uro but not a PC specialist, because he
was the first available uro. That was fine by me, because at that point
I just wanted to get the ball rolling. He was candid about his
specialty, answered many questions, essentially functioned as highly
informed screener, and set me up with a uro onc PC specialist promptly.
I think I interviewed 4-5 specialists in my first two trips to that
hospital, and all gave me plenty of attention.

>
> Midway through my sojourn I asked the nice lady who was
> taking my info, if she knew anything about the NCCN
> guidelines. Specifically I was interested in 2 points which
> I read in a brief on the new guidelines (which I found
> thanks to you kind folks):
>
> "These newest guidelines specifically address the
> problem of there being no consensus on PC treatment,
> and stresses that it is critical for doctors to spend
> more time with the patient discussing the different
> options."
>
> "The new Guidelines also stress the need for a multi-
> disciplin
> that the newly diagnosed patient be evaluated by a
> team of specialists. They recommend that this become
> standard procedure."

Those guidelines are news to me, but they're how I was treated, and I
got the impression that was the norm at my hospital.

> I tried to explain to the "induction professional" whom I
> was trusting with my most valuable possession (not my
Considering the cancer we have, I'd rate my SSN my SECOND most valuable
possession. ;-)
Besides, any sharp 8th grader can probably find my SSN on the internet.

> Anyone who can point us to resources to cut through the
> bullshit red tape, and/or deal with the spiritual/emotional
> component; your recommendations are graciously accepted.

OK, here ya go.
I had three tickets that *very*definitely* opened many doors and blitzed
through months of red tape for me, including:
1. A long, detailed, highly sympathetic consultation with a highly
qualified uro nurse on my very first cold phone call to the new hospital.
2. A prompt return one-hour call from the uro onc PC specialist who
ultimately did my RRP. He cut months of red tape with one wave of his
hand, setting me up with one of his colleagues (see above) and seeing me
himself shortly thereafter.
3. Getting me consultations with several specialists, as many as three
in one day with zero advanced notice; each do in turn just picked up the
phone, called his bud who ran another relevant department, and had me
before the new specialist within an hour.
4. Ultimately shortening my time from biopsy to surgery from the
expected 6-8 months to 6-8 *weeks*, even though
5. My rare combination of unrelated cancers led me to request an
interdepartmental joint surgical procedure new to them.

You can obtain those tickets, too. They are:
1. Biopsy verification of cancer. Once they know you're past the PSA/DRE
thing and have a Gleason score in your hand, much of the tape dissolves.
2. Extensive, clear, succinct, thorough, printed summaries of my
prostate cancer, my broader medical history, my physical condition, my
treatment and SE priorities . . . each page written explicitly for the
specialist it is intended for and in their language, to the extent I
could, with lingo such as hx, bx, SEs so they could scan it rapidly.
Each new specialist could glean my relevant history and status in
seconds by scanning a page or two.
3. The sheer *knowledge* those pages represented helped us all cut right
through tape and consultation time quickly.

They could see that I had given this stuff hundreds of hours of
research, thought, and introspection, and was ready to assess treatment
options, choose one, and act. Several physicians commented very
favorably on this approach, one saying that if all their patients walked
in this prepared, they could treat twice as many people and do it
better. I've used this approach for decades with similar results,
including multiple life-threatening issues. I've never had even one
physician complain about it, many have filed my pages in my permanent
medical records, and several have credited my summaries with resolving
complex issues in my cases, to the extent that one led to a diagnosis
that had escaped years of medical scrutiny.

It works, and any articulate and motivated patient can do it, as
evidenced by the fact that I'm an engineer with zero medical training.

I.P.

Just make sure when you ask how many surgeries he's done that he only
refers to prostate surgery and by what technique he used. Some will
include all there surgeries to make themselves look better knowing why
that you want to know there skill level. Experience level for a particular
procedure on a specific organ is what counts.

Ron S.

On Mar 8, 8:10 am, <quih...@yahoo.com> wrote:

> ... My
> wife, being the dutiful and talented researcher that she
> is, did a little digging to find out that this Urologist
> specializes in cancer of the bladder. Probably not the guy
> I need to see.
> ...

Don't be too put off by that. My son had an operation for a
different problem at Hopkins. His intake doctor was an
inexperienced, inexpert, and not yet really incompetent resident.
But he just did the intake. The actual surgery was done by a
pair of outstandingly qualified surgeons who did a super job.
Those guys also spent some time with him to answer all his
questions before and after the surgery.

I'm hoping your situation will be similar. Hopkins has some
really first rate surgeons, led by Patrick Walsh himself. They
also have some first rate radiation oncologists. They have the
same medical bureaucratic BS that everone else has, but when push
comes to shove, they are a good place for the actual surgery.

Alan