Surgery to Remove Breast Tumor With Carcinoid Syndrome Posted: 01-24-04 04:04am
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.
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Garnet
New User, Becoming EHEALTHy
Joined: 11 Jan 2005 Posts: 7
Posted: 01-11-05 03:57am
Bj - I saw your post, almost a year after
you made it and wonder how you are doing?
I hope you get this.
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