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Medical Forum / Diseases and Disorders / Cancer / April 2004

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Cancer Treatment Centers of America

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Julianne - 10 Apr 2004 19:01 GMT
I have a friend who is considering going to Cancer Treatment Centers of
America for Pancreatic Cancer.  Does anyone have any personal experience or
knowledge about these facilities?

Thanks.

Julianne
?.G. - 10 Apr 2004 19:27 GMT
Greetings:
My fathr has "pancreatic cancer" back in 1986. We are from Spain, and
decided to attend M.D. Anderson Hospital.
We had a hard but good experience at the end. The diagnose in Spain was
wrong, and he had osteoporosis, a disease involving lack of calcium on
bones. The scanner that we took with to Houston was a poor quality one.
The doctors were excellent (many of then spaniards!!!) and the support
personnel also cheerfull. All the staff was serious and conciencious
workers. The technical machinery was, probably, the best in the worls by
that time.
I believe it is still recognised as one of the best hospitals in the world.
I don?t know where you are from, but here in Spain, the Cl?nica
Universitaria de Navarra, located in Pamplona has an enormous prestige
regarding adult cancer.
Hope to have helped you. Best luck on your search.

?ngel

> I have a friend who is considering going to Cancer Treatment Centers of
> America for Pancreatic Cancer.  Does anyone have any personal experience or
[quoted text clipped - 3 lines]
>
> Julianne
Julianne - 10 Apr 2004 20:10 GMT
> Greetings:
> My fathr has "pancreatic cancer" back in 1986. We are from Spain, and
[quoted text clipped - 13 lines]
>
> ?ngel

Yes, you have helped enormously.  We are but five hours away from MDAnderson
and that would be my choice.  Cancer Treatment Centers of America has flashy
ads on TV that sell hope to the very vulnerable.  Sometimes, I am cynical.
If something sounds too good to be true..........

Julianne

> > I have a friend who is considering going to Cancer Treatment Centers of
> > America for Pancreatic Cancer.  Does anyone have any personal experience
[quoted text clipped - 4 lines]
> >
> > Julianne
J - 10 Apr 2004 21:24 GMT
>  Sometimes, I am cynical.
> If something sounds too good to be true..........

Stay cynical. My friend in the US's brother chased all over the country for
surgeries, treatments for pancreatic cancer. I suspect if he'd had enough money,
time and energy he'd have chased all over the world.
(we've heard here of others who've done the same).
His was caught late. He spent most of his time getting sicker and weaker and in
hospital in treatments of various kinds (conventional and altie). His wife and
kids trailed behind living in hotels and motels.
He might as well have gone on a holiday with his family, before he was too ill
and weak to enjoy his time left.

There are currently 325 subscribers to the private ACOR mail list
http://www.acor.org/ under "P"
When I post those, I don't know if they are actual patients or family members.

If we can be of assist, please let us know. We can be here for you also. I know
it's a very difficult diagnosis for friends and families to accept.

J
Julianne - 10 Apr 2004 21:42 GMT
You are too kind to welcome me in such a warm way and to provide valuable
guidance.  I am a nurse but my clinical experience was exclusively with
heart disease.  I am as clueless about ca as the next person.

I have spent a lot of time on the net and thinking about this today.
Houston is only 5 hours from here and is a fun, fun city.  I am going to
suggest that she go to MD Anderson if she wants to explore other treatment
options.  Because they are so close, the docs here are experienced working
with MD Anderson.  Typically, a patient will go for a few days for
evaluation and if indicated, initiation into a treatment program.  The plan
of care is shared with the local doc so that a lot of care can be done
locally.  If MD Anderson doesn't have anything to offer her (late 50's, mets
to the liver), she can at least have a little holiday in Houston with her
family.

I spoke at length with my friend on the phone today.  She is very calm and
accepting.  Ten years ago, she was shot between the eyes at point blank
range in an armed robbery (bullet was deflected by her glasses - must have
been really ugly glasses).  Every day that she has been alive for the past
ten years, she has appreciated for the gift it was.

I believe she is willing to explore chemo as long as she tolerates it.  I am
confident in her resolve not to partake in treatment that will so greatly
diminish the quality of her life that the few extra days she gets from it is
inconsequential. Someone in the nursing group reminded me of the importance
of a durable power of atty for health care.  The nurse who responded worked
with these kinds of patients and says that he has frequently seen someone
hi-jack a plan of care when a patient became to frail to make decisions.

I just wish her family would take a trip on the reality train.  I know it is
asking a lot.  I cannot imagine how I would respond if it were my family
member.  But, my friend wants to focus on living fully for as long as she
can.  Her family seems to be focused on her death and trying to beat it as
if it were an enemy instead of a natural ending to a life well lived.

Again, thank you for your warm welcome and sound advice.

j

> >  Sometimes, I am cynical.
> > If something sounds too good to be true..........
[quoted text clipped - 17 lines]
>
> J
J - 10 Apr 2004 22:40 GMT
> You are too kind to welcome me in such a warm way and to provide valuable
> guidance.  I am a nurse but my clinical experience was exclusively with
[quoted text clipped - 34 lines]
>
> j

Goodness me! To say she dodged a bullet would be very true. I'm shocked but then
unless in big cities (in Canada) there's rarely use of firearms. Holdups there
are and no less traumatic.

A lot of wisdom in your post and I'm glad you are a nurse. That's bad news
indeed that it's spread to the liver but not unusual since the signs and
symptoms are often non-specific.

I'm wondering what you mean by "hi-jacK'? Could you please clarify? Trying to
prevent the patient from having more treatments or trying to stop doctors from
trying new treatments? or ???

I value every life on this planet, but I believe that the best of both counties
is yet to be found.
In our country some people feel that doctors give up too easy and in your
country, I sometimes get the impression that *some* doctors "push" treatments
when it's clear there'll be no benefit (palliation, remission or cure).  And
some patients (and friends and family) have been so accustomed to hearing the
words "cancer" and "chemo", they cannot distinguish between types of cancer and
those that are treatable and those who should opt for quality of life.

In that regard, if you can be there with your friend when she consults with the
doctors at MD Anderson, try to work through Steph's Questions to Ask with the
doctor and write the doctor's answers down. So your friend (and family) can have
time to let it sink in
<http://groups.google.com/groups?hl=en&lr=&ie=UTF-8&selm=KyW97.994%243x.3689%40ne
ws.bc.tac.net
>

You know Julianne, I've been here approx 4 years, Steph longer and he practises
radiation oncology in a Province on the West Coast. I've rarely, if ever, heard
of a pancreatic cancer patient with liver involvement surviving more than 3
months. On numerous occasions, I've searched and searched the internet. I did
find a web page that claimed to have survivors and e-mail addresses. I emailed a
few persons and never got replies. The e-mails did not "bounce back" meaning
they were going somewhere but nobody home. Or the e-mail addresses had been
reallocated to someone new. Some of the few survivors I have found were caught
early and had surgery, (and there was no spread to other organs)..
I'm sorry to be so direct, but it's important to know. If she survives longer,
it's a bonus. I'm sad to say. We usually tell patients (or loved ones) to tell
to get their affairs in order immediately and that includes power of attorney
for health care and more.

I certainly encourage her to visit with her family for as long as she is well.
If there's bile duct or other blockage, she could require a stent so she can eat
as long as possible. These are perhaps things to talk to MD Anderson about.

I encourage such patients to try to eat like a diabetic for as long as they can,
but do have some treats also.  Actually I think John's Hopkins has a section on
their web page about that. Near the end, (unless the liver fails first), the
pancreatic cancer takes all the nutrition from whatever foods or drinks they are
absorbing and fast weight loss, sometimes severe pain /pancreatitis and severe
fatique occur.

I think (but not sure) that chemo can help wth liver pain. Perhaps Steph could
clarify and/or radiation therapy. I'm not at all sure that chemo helps with
pancreatic pain. Perhaps steroids if there's inflammation. Mike will be around,
he's in palliative care in Australia.

I don't like posting hospital web sites (advocating or advertising for them) but
this one has the most comprehensive
information.http://pathology2.jhu.edu/pancreas/index.htm

Post anytime,
J
J - 11 Apr 2004 02:04 GMT
replying to my post to change the subject line because Mike said he doesn't always have a chance to
read all the posts here.
J

> > You are too kind to welcome me in such a warm way and to provide valuable
> > guidance.  I am a nurse but my clinical experience was exclusively with
[quoted text clipped - 98 lines]
> Post anytime,
> J
Gert Wallage - 11 Apr 2004 05:51 GMT
> You know Julianne, I've been here approx 4 years, Steph longer and
> he practises radiation oncology in a Province on the West Coast. I've
> rarely, if ever, heard of a pancreatic cancer patient with liver
involvement
> surviving more than 3 months.

How I wish my mom's surgeon had told me that.  She was found to have
pancreatic/colon cancer with mets to the liver last February.  Her surgeon
said she'd have weeks, months, or possibly as long as two years left to
live.  The "long as two years" part made us think that we might be looking
at making longer-term plans, so after making extensive arrangements and
saying goodbye to her friends, my mother arranged to move out to live with
me.  Mom died two short weeks after she arrived - and exactly three months
after the discovery of her condition.

I agree, we can hope and pray that someone with pancreatic cancer with mets
to the liver *will* manage to live longer, but from my own sad
experience... best to assume that their time may be short (as you say,
three months or less).

Gert
J - 10 Apr 2004 23:03 GMT
"Á.G." wrote:

> Greetings:
> My fathr has "pancreatic cancer" back in 1986. We are from Spain, and
[quoted text clipped - 13 lines]
>
> Ángel

That's a long way to go to get a diagnosis and treatment of osteoporosis.
When I read this web page, I can see how perhaps they might have made the
mistake.
http://www.muschealth.com/ddc/organ/smalb.htm

Are you saying that now things have improved in Spain - better equipment and
diagnostics?
J
?.G. - 11 Apr 2004 00:08 GMT
It was a long way, you are right. But the trip back home was doubtless the
happiest in my life. Unfortunately, my father died from lung cancer 8 years
ago. It looks like cancer is too close to my life: First, my father, now,
one of my sons. When we were in Houston, I remember what the one dollar note
stated: "In God we Trust". And that is what help us to carry on everyday.
Things are improving quickly in Spain for last 20 years. For the last five
or seven, it was the time for the national security system. Ours is one of
the world?s most protective and well covered systems. It holds itself on the
tax aplying to normal income. The employer pays a part and the employee
another amount. The coverage includes almost everything related to health
that may happens: From a single flu, including part of the costs of
medicines, or the whole amount for retired people, to a cancer treatment
with chemotherapy like my child is having now. Sometimes it is a little
slow, but that is understandable if you think that it attends the whole
population of the country: 40 million. When you retire, you will get until
you die a monthly pay from the system whose amount has direct relationship
with the years you have been working and how much you have contributed to
the payments. It is a little complicate to explain, but the system works,
especially for the poorest people: No matter how much you pay, you will get
the same attention and care.
Regards,

?.

> > Greetings:
> > My fathr has "pancreatic cancer" back in 1986. We are from Spain, and
[quoted text clipped - 22 lines]
> diagnostics?
> J
J - 11 Apr 2004 10:40 GMT
"Á.G." wrote:

> It was a long way, you are right. But the trip back home was doubtless the
> happiest in my life. Unfortunately, my father died from lung cancer 8 years
[quoted text clipped - 19 lines]
>
> Á.

That's (in theory) how our system (Canada) works.
I'm very sorry to hear about your father.
Let us know how Nicholas is doing. I guess this (thread) is also of interest
since his tumor in near the pancreas?
Best wishes,
J
J - 10 Apr 2004 20:39 GMT
> I have a friend who is considering going to Cancer Treatment Centers of
> America for Pancreatic Cancer.  Does anyone have any personal experience or
> knowledge about these facilities?

Hello Julianne and welcome to alt.support.cancer
Is your friend relatively young and in otherwise good health?
If yes, proceed to next question.

Is your friend's pancreatic tumor resectable ( caught early - surgically
removable) and not spread outside the pancreas?
If caught early, find the best surgeon ASAP.

If not detected early, stay where (s)he is. (assuming there's an oncologist
radiologist and palliative care nearby).
Is my best advice.
J - not a doctor
 
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