NET in 2nd section of the duodenum

Sadi Member Posts: 3 Member
edited January 3 in Rare and Other Cancers #1

Hello all! I'm new here!

I had a NET removed from my duodenum on the 12th, they said that they got it all. Which I thought was awesome!! Until I did a little research on my own... They want me to come back in 6 months for an EGD, but they don't seem concerned about sending me to an oncologist to make sure that there aren't more tumors anywhere else.

I have asked for a referral to MD Anderson and I was wondering if any of you have a similar type of cancer, what your experiences were, and if you went to MDA.


  • victojospar27
    victojospar27 Member Posts: 1 Member

    I got this diagnosis in 2021. Had surgery. They removed 2 small tumors and about 12 inches of small intestine. Have been fine ever since. I am being followed by an oncologist. Treatment plan is for me to get blood tests and an Scan once a year for 5 years . The Scan involves injecting me with a radioactive substance that lights up if it detects an NET. It is not able to detect other cancers . There are people out of Anderson who specialize in cancer prevention. One of them wrote the book “Anti Cancer Living”. Good luck with all this

  • eokeeler
    eokeeler Member Posts: 1 *

    I had colonoscopy and a rectal ‘polyp’ was found. Pathology came back confirming an net - they told me over phone and went back for a ESD similar to what you’re saying and no referrals. I ended up making an appt with Mt Sinai Dr who only works in this field, after negative (as in nothing found) net-specific PET scan, my oncologist still wanted me to have a colleague gastro who deals with NETs to go back in. They luckily found the initial scar from the ESD and removed a deeper and wider section. Pathology came back and it was confirmed that residual cancer was still there. Long story short - NETs are rare and you should find a local oncologist that specializes in it. The NET community is small but great with knowledge and support. If your are on FB check out The Carcinoid Cancer Foundation (CCF) page Hope this helps!

  • Sadi
    Sadi Member Posts: 3 Member

    Thanks! I'll have to look the book up. :) As of right now they did a scan with something they injected me with, I am supposed to go for another EGD in February I believe. After that (and because I've had to focus on a multitude of other health issues at the same time they found the NET) I'm going to talk to my gastro dr and get him to refer me to a NET specialist, just to make sure.

  • Sadi
    Sadi Member Posts: 3 Member

    I have an upcoming EGD and then after that I plan on asking for a NET Specialist referral. Thanks for your story! Hopefully I can find one close.