Neuroendocrine tumor

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Neuroendocrine tumor

Postby newro » Sun Mar 06, 2011 1:19 pm

In July 2010 I suddenly started having intense pressure in my upper left abdomen that went from the front through to my back. It feels like something is inside pushing outwardly very hard. I would start feeling like my legs were very heavy almost like a very heavy person was riding piggyback on me. I began noticing it would only happen about 1/2 to 1 hour after eating and would last about 6 to 8 hours. I wake up feeling fine until about 1 hour after I eat. I went to the ER and they said it wasn't heart related and was probably stomach acid. After 4 weeks on Pepcid AC I wasn't any better. I went to my primary care MD and she ordered a visit to a GI MD. He said he didn't think it was digestive and told my primary care MD to do a CT scan. The CT report came back normal. My MD refered me to a different GI MD but it took a long time to get an appointment.He ordered a Colonoscopy/endoscopy. This was November now of 2010. At the end of the colonoscopy he peeked into my small intestine and found a small 1/4" tumor which he biopsied. The biopsy came back showing it was a Neuroendocrine carcinoid tumor (NET). He refered me to a surgeon who is a NET specialist. He did some more tests (HIAA blood and urine tests, and an Octreoscan and said the first CT scan was very poor quality although, he could barely see the NET on it knowing where it was from the colonoscopy. The new CT scan showed it clearly and the Octreoscan showed the NET as being the only one in me as of Jan 2011. He plans on doing a hemicolectomy along with taking out the 2 inches of small intestine that has the NET. My Colon is fine, but he says to reestablish good blood flow they have to reconnect it to the transverse colon, and therefore have to remove the ascending and part of the transverse colon. Surgery has been postponed 6 weeks now because I have a cold and they can't do surgery til I'm totally over it.
No one can say for sure that the NET is what is causing my symptoms, which are in the upper left part of my abdomen (the NET is in the lower right part of my abdomen) The surgeon says he thinks the symptoms will go away when the NET is removed. Most of the other doctors say it probably isn't related. That's all up to this point.
Posts: 2
Joined: Wed Mar 02, 2011 8:47 am
Cancer Diagnosis: Neuro-Endocrine Carcinoid Tumor
Relationship To Patient: Self

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