Should I see a NET specialist?

Posted by Liz @lizzyeastwood, May 17, 2023

In January 2020 I had a distal pancreaectomy to remove a malignant non functioning pancreatic tumor. It was well defined; local lymph nodes clear; ki 67 >2. Every 6 months I receive a pt scan which I discus with my surgeon’s PA. Should I also be consulting with a Net specialist?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

@djchambers

I live in Louisville,KY. Just diagnosed with net on pancreas, following endoscopy with ultrasound. Pathology says “well differentiated”. Only one doctor in the area, a surgical oncologist at University of Louisville specializes in this field.

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Thanks to you and the others who replied. I can provide a little more information. About a year ago I had an abnormal result from an A1c test. My PCP at the time asked if I ate a lot of sweets, drank, sodas, etc. The answer is no. I eat a very healthy diet and have celiac disease. Nevertheless, I tried eating more raw vegetables and high fiber. Then I started with rectal bleeding. I had an endoscopy and colonoscopy. The endoscopy showed erosive gastritis.

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@djchambers

Thanks to you and the others who replied. I can provide a little more information. About a year ago I had an abnormal result from an A1c test. My PCP at the time asked if I ate a lot of sweets, drank, sodas, etc. The answer is no. I eat a very healthy diet and have celiac disease. Nevertheless, I tried eating more raw vegetables and high fiber. Then I started with rectal bleeding. I had an endoscopy and colonoscopy. The endoscopy showed erosive gastritis.

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I also have a history of being unable to eat some fresh fruits, such as apples. About that time I passed out when I tried to eat a pear. This summer I developed an ulcer which they confirmed with an endoscopy. In September I caught Covid for the first time, and my health crashed. I took Paxlovid and had terrible stomach pain, could not eat for about two weeks. I also couldn’t get out of bed without fainting. My husband took me for bloodwork, and they discovered I had severe anemia with hemoglobin of 6.1. I’ve been receiving iron infusions, but I’m still anemic, although my iron levels are full. I had the endoscopy with ultrasound earlier this month. They took biopsies of spots on my pancreas. The Gastro doctor initially told me I had stage four cancer most likely. However, pathology report showed net, very slow, growing and well differentiated. I’m scheduled to see Dr. Charles Scoggins, a surgical, oncologist at U of L. And then consult with Dr. Jeff Hargis, and oncologist.

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Thank god for our multi discipline team of NET specialists, surgeons, chemo specialists, etc. they have saved my wife’s life and given her a good chance to live a long life. From a stage 4 diagnosis in April 22 to 9 months of chemo, surgery in March 23, with removal of mass of pancreas, debunking of tumors on liver, we now are finishing up PRRT treatments which are keeping the NET only in the liver hopefully. Our next step in this fight is per our team, is to get liver transplant to possibly set her up for a long positive prognosis. There are no guarantees with NET though, and we understand it may come back. The key to all this is trusting in your NET team to advise you in the best course of action to live a long life. You got this.

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