Carcinoid Crisis From Surgery Information Posted: 01-24-04 03:55am
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 knew nothing about
carcinoids and I am afraid those
participating in operation and post care
after 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 past carcinoid history and
need for testing along with medical
reports. Told them all to do follow up
with 24 hour urine and normal tests.
Most did not 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 this
is true suckers as it seems. Another
said this: "i never thought to see a
surviver of carcinoid." I developed
severe asthma, sever anemia, and a host of
other common symptoms from carcinoid.
Almost died last year and a nurse...Not my
usual doctor (so glad he wasn't in that
day...That nurse saved my life)stated,
"everyone is missing something. I am
going to look for someone who has
experience with carcinoid". Sent me to
an oncologist the next week who knew more
than the oncologist the year before. He
was amazed at the stupidity 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
surgery will know what they are doing if I
have a carcinoid crisis. Please
someone, please tell me where I can get
information that will prepare them for
carcinoid crisis complications.
