Woodi Wooding Andersen, MSN, CCRN

1
Woodi Wooding Andersen, MSN, CCRN

• Gastric Carcinoid,
• January 2005

2
First Symptoms

• Began Early 30s
• Macrocyctic iron deficiency anemia
• Treated with frequent H H
• Oral Iron
• Not unusual for a menustrating female except
  for macrocystosis
• Eventual Lap Chole which seemed to help with
  iron deficiency to a point

3
Spring 2004

• Began experiencing GI Problems
• Had already been diagnosed with IBS
• Much stress
• Very poor eating/sleeping habits
• Very low protein high vending machine
• Blew it off to working conditions

4
Fabulous Doctor

• Didnt like the combination of symptoms
• Didnt like the macrocytic iron deficiency anemia
• Wasnt willing to accept at face value
• Determined to figure out what was going on
• Determined to help me, even though I was
  convinced it was life-style.

5
Next Step

• Blood Work
• Antibody to Intrinsic Factor Perncious anemia
• Lower GI
• Return for sigmoidoscopy
• Upper GI
• Areas of gastritis - ?H. Pylori?
• Diagnosis
• One month to call me. 2 minute conversation

6
Research

• Gastric carcinoids are rare tumours.-  Type I 
  - Associated with chronic atrophicgastritis with
  or without pernicious anemia.In autoimmune
  gastritis progressive destruction of the
  specialised parietal and chief cell zone leads to
  atrophy , intestinal metaplasia , hypochlorhydria
  and hypergastrinemia.- Type II - In Zollinger
  Ellison syndrome,   particularly in patients
  associated with multipleendocrine neoplasia type
  1.             - Type III - Sporadic tumours
     - Not related to hypergastrinemia   - In the
  antrum or corpus   - Larger lesion, may be
  ulcerated.   - May have an aggressive course.

7
Finding Help

• Talking with Physicians I knew
• Personal Resources
• Dr. Woltering
• Using the Carcinoid Cancer Foundation and
  Listserv
• California Physicians
• Choosing a physician, then un-choosing him
• Local Physicians
• Firing Physicians
• First oncologist recommended gastrectomy, but I
  wasnt ready and he didnt want to know about
  Sandostatin

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Whos the Boss?

• A physician is the patients employee
• Physicians are paid by the patients insurance
  company.
• No patient, no insurance money
• No insurance money, no job
• A patient has the right the OBLIGATION to be
  a self advocate
• DEMAND excellent care but be informed

9
What I did

• Got on the Internet
• Contacted the Carcinoid Cancer Foundation
• Joined Listserv
• Took a list with me to PCP and Oncologist
• LiveStrong Foundation
• Made informed decisions

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What I did contd

• Tried less aggressive first
• Contacted like-livers
• Stayed informed
• Kept meticulous records so I and physicians
  could track results and progress
• Questions, questions, questions

11
Surgery

• First Hospital
• Large chevron incision
• Second Hospital
• Long mid-line
• My choice
• Laparoscopic bypass
• Surgery Thursday, back to work Wednesday

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End Results

• Apparently carcinoid-free
• No more sandostatin and associated costs
• Lost almost 100 pounds
• Healthy
• YAHOO!!