Michelle Petersen, Survivor
Location: Rural Western Missouri
Profile, Blog, Or Website:
Diagnosis: Carcinoid Syndrome - No primary tumor found. My Carcinoid "blood markers" have
been elevated in the past, yet no tumors have been found despite scans and exploratory surgery.
One Octreotide Scan in 2/09 showed a "small area of uptake" in the terminal ileum and right lobe
of liver. Unfortunately in an exploratory surgery in 3/09, no tumors were visible or palpable, so
nothing was removed.
Date Diagnosed: July 27, 2007
My Story: After ~12 years of intestinal issues and symptoms, I finally got a diagnosis of
Carcinoid Syndrome in July 07. By that time I had been flushing for over 2 years, and was
flushing nearly every day. I'd never heard of Carcinoid and NONE of my past (many) doctors
ever suggested it. Only after reading a medical book I'd gotten from the library did I learn of it
and begin investigating on my own.
Every once in awhile I'd get fed up with the daily GI issues (mostly diarrhea and gut pains) and
would do some research. So I was reading up on any/all causes for these problems. When I read
that Carcinoid Syndrome includes both unrelenting diarrhea AND facial flushing... a light bulb
truly went off.
I soon after found the ACOR online support email group for Carcinoid, which ultimately lead me
to see Dr. Mike Zaruba in Auburn, NE and then Dr. O'Dorisio in Iowa. Only because Dr.
"O'Do" took 19 vials of blood and ran all the unusual and rare Carcinoid blood "markers" did I
get a diagnosis.
It is frustrating that for years I was told by various GI doctors that I had Colitis, Irritable Bowel,
etc. Because colon cancer runs in my family, that's the thing I'd always been concerned about
and looking for. Not once did any of those docs, in 10-12 years, suggest Carcinoid!
As the saying goes, "If you don't suspect it, you can't detect it!"
Even though it wasn't "happy news" to be told that I have Carcinoid Syndrome, it was a relief to
have an explanation and diagnosis. To me, knowledge IS power and now I could tackle this
Surgery, Chemo, or Other Therapy I've Had: Surgery: Exploratory abdominal surgery in
3/09 with Dr. Jean Botha at the Nebraska Medical Center. Unfortunately no tumors were visible
or palpable and nothing was removed. "Tiny" areas of uptake had been seen on the 2/09
Octreotide Scan but during surgery, those areas were not confirmed.
Drugs or Chemo or Therapies I Use or Have Used in the Past: I currently take Sandostatin
(Octreotide) Sub-Q, 400mcg 3x/day. The shots help my Carcinoid Syndrome symptoms
immensely, with very good control over the diarrhea, less gut pains and fewer incidents of
Current Monitoring Protocol (Blood tests, Scans, etc): Annually: Octreotide Scan
Every six months: Blood tests - Serum Serotonin, Chromogranin A, Pancreastatin,
Neurokinen A, Substance P (plus the "usual" CBC, etc.)
Other things I want Other Survivors to know: It's very possible to lead a happy and
productive life despite Carcinoid Syndrome. Don't settle for less and run the HECK away from
any doctors who don't seem to understand (or be willing to learn about) this complicated disease.
Online support groups and chat rooms can be very helpful, but please remember that each case is
individual and just because "x, y or z" worked for another patient doesn't mean it would be ideal
for you. Only you and your medical team can make those decisions. And just because another
patient had a negative experience with "x, y or z" doesn't mean that you will.
It's easy to become enmeshed or overwhelmed with all of this Carcinoid "stuff," but try to let
yourself rest when needed and have other interests and hobbies, passions, etc. Many people live
for many many years WITH this disease with careful management. It is not a death sentence, and
no one of us has an "expiration date" stamped on the bottom of our feet!
My Doctors That I Would Recommend to Others:
Dr. Thomas O'Dorisio, University of IA, Iowa City, IA. He is my "carcinoid expert" and he is the
one who diagnosed me in July 07.
Dr. Richard McKittrick, Kansas City Cancer Centers South. Kansas City, MO. He is my "local"
oncologist and he's wonderful. Very willing to work with and listen to the carcinoid "experts".
Dr. Mike Zaruba, Auburn, NE. An exceptional primary care doctor who is now very experienced
in testing for Carcinoid and treatment.
Dr. Jean Botha, Nebraska Medical Center in Omaha, NE. Absolutely incredible and talented
liver, bowel and neuroendocrine surgeon.