Can NETS be misdiagnosed?

Posted by msmith6747 @msmith6747, Jun 16 5:11pm

I had a colonoscopy recently and the gastrologist said I had a net in my descending colon on the right. He took a sample and sent it for a biopsy. The biopsy report said it was not malignant Grade 1.
I had had a PET scan before the colonoscopy which thought it was a fat deposit. The PET scan used sugar to see any uptake. After the biopsy, I was sent for another PET scan which used copper. The results were negative for NETS. My surgeon and oncologist still insist on surgery. I am baffled.

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

Teresa, Volunteer Mentor | @hopeful33250 | Jun 17 5:33am

Hello @msmith6747 and welcome to the NETs support group on Mayo Connect. I can certainly understand your concern over the diagnosis. Please know that NETs often do not show up in scans. I have had three surgeries for small NETs in the upper digestive tract and PET scans never revealed any NET activity. A biopsy result, however, being positive for NETs is an important indicator and should probably not be dismissed or ignored.

In order to put your mind at ease, I would encourage you to seek a second opinion with a NETs specialist. As NETs are a rare type of cancer, either a virtual or in-person appointment with a NET specialist would be very helpful at this stage of diagnosis.

Mayo Clinic has NET specialists at all three locations (here is a link with appointment information http://mayocl.in/1mtmR63). If for any reason you are not able to be seen at Mayo Clinic, here is list of NET specialists throughout the U.S. and worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

Here is a link to some information about other tests used to diagnose and follow up with NETs, https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/

Were you having any symptoms prior to the colonoscopy? How are you feeling now?

msmith6747 | @msmith6747 | Jun 19 8:00am

No, I have had no symptoms before the colonoscopy except small amounts of bloody mucus in my bms. My complaint forever has been fatigue. I am 80 years old and have chalked that fatigue up to old age.