Carcinoid Crisis From Surgery Information Posted: 01-24-04 03:45am
I am 49 with carcinoid syndrome. I am
going to have a tumor removed from my
breast soon. I spent 14 years having
physcians who knwe nothing about
carcinoids and I am afraid those in
orduring my surgery will know just as
little. I have been through so much and
I am now paying the price for assuming
doctors know how to deal with carcinoid.
14 years ago I had a carcinoid removed
from my colon. I moved and informed all
doctors about ti along with medical
reports. Told them all to do follow up
with 24 hour urine and normal tests.
Most didn't have a clue what I was even
talking about. Others brushed it aside
with the comment "it was so rare to have
it in the first place it would be
impossible to get it again. Honest.
Another said this: "i never thought to see
a surviver of carcinoid." I developed
severe asthma, sever anemia, and a host of
other commom symtoms from carcinoid.
Almost died last year and a nurse...Not my
doctor said, "everyone is missing
something". Sent me to an oncologist who
knew more than the one the year before.
He was amazed at the stupity of 14 years
of physcians who knew I had carcinoid and
never ran one test. Now carcinoid is in
my liver and I get $6,000 injections a
month. It is a miracle I am alive.
This is why I cannot assume the team in or
will know what they are doing during
surgery. Please someone tell me where I
can get information that will prepare them
for carcinoid crisis complications.
|
leia
New User, Becoming EHEALTHy
Joined: 26 Feb 2004 Posts: 1
Carcinoid Info Posted: 02-26-04 09:36am
Hello. I read your story. My father,
age 60, has carcinoid syndrome. He was
diagnosed in 1986. He recently went to
the netherlands for the newest treatment
for this disease. It is not yet approved
by the fda. My father's doctor is Dr.
Kvols in tampa, fl. Dr. Kvols is one of
the few leading researchers in the world
on carcinoid syndrome. Dad is a wealth
of information on this disease and could
point you in so many right directions.
He walks in your shoes every day regarding
the frustration towards the medical
profession and their lack of understanding
of the disease. Dr. Kvols has been a
lifesaver, literally. Every time my
father goes to a doctor or to the er the
first thing he says is that he has
carcinoid syndrome. He knows that the
doc probably has no clue what that means
so Dr. Kvols is usually contacted right
away for explanation and guidance. It's
a pain in the butt, but, nothing can be
taken for granted and you have to be your
own advocate. I give my dad all the
credit in the world for staying on top of
this disease when all the odds were
stacked against him. I know he would
love to talk with you and help you out.
If you're interested please reply and I
can give you his phone number and/or email
address. Good luck.
-leia
