Neuroendocrine Tumor Awareness
A patient's experience with a very rare form of cancer
Suzi F. Garber, of Reading, PA., a neuroendocrine tumor patient at the Abramson Cancer Center, writes about her experience so that others might benefit from her story and become proactive advocates for themselves and their loved ones.
For many years, I had been misdiagnosed as having irritable bowel syndrome. After I wound up in the emergency ward in intense pain, I had a battery of tests -- I had an ileal bowel obstruction. An octreotide scan showed spots in my liver which was subsequently biopsied and were positive for carcinoid cancer, Stage IV. I had been diagnosed with a rare cancer that both had metastasized and was inoperable at that time.
In learning more about neuroendocrine tumors (a rare type of cancer that starts in the neuroendocrine system - the part of the body where the nervous system and endocrine system work together), I discovered a listserv for Carcinoid/NETS at www.acor.org which was my introduction to an elite group of NET specialists. Carcinoid and neuroendocrine tumors fall into the same category. I became aware of the rate of misdiagnosis prevalent in patients with these diseases. I also learned that Penn was home to Dr. David Metz, a senior member of the Division of Gastroenterology at Penn and one of the most preeminent national experts in neuroendocrine tumors. I now realize there is a winding path to an actual diagnosis -- we are referred to many specialists, there are differences in testing assays from lab to lab as well as in equipment and radiological interpretation. I am so grateful that Philadelphia has a major medical center for this rare cancer. Penn's Abramson Cancer Center was a clear choice for the best possible care. We appreciate Dr. Metz, Dr. Mike Soulen, Dr. Doug Fraker and the whole team of specialists who were an exemplary team of cancer providers.
On a personal note, Dr. David Metz has been supportive, flexible, caring and accurate regarding my medical care. He has strongly supported me in both my missions to form a carcinoid/NETs support group (www.phillycarcinoid.org) for the Philadelphia area and also my dream of the creation of a neuroendocrine tumor clinic at HUP.