NET not found on PET/CT

3 yrs ago a NET removed from small intestine during endoscopy - since then all labs & CT scans have been fine, initial PET scan fine, yet I continue to be sick, having symptoms of NET. See my oncologist every six months, he is familiar with NET thru Dana Farber, he puts more faith in the lab results than in what his patient is telling him. For many years I have been told I had bad IBS-D ever though my symptoms were outside IBS. Mayo Clinic was just announced as being one of the leading NET hospitals in the country. This support group is outstanding. I have spent much time researching thru NIH, other legitimate resources and the common theme is this is a rare cancer and doesn't always show up in lab work, CT scans nor MRIs. I see my oncologist next month and he is very open to discussion, so I will ask about other diagnostic tests specifically for NET. The big hospitals in Boston, as well as other national hospitals, are more focused on the more ordinary cancers and from what I have read, NET research doesn't get comparable funding for research. I would be lost without this Mayo Clinic support group because we all have the same rare cancer. God bless.

I am so happy for you!!!! Hugs!!!

Dear pippa05, have you had GaDotatate PET scan? It is very useful for NET diagnosis, especially for secreting tumours, as they have the necessary receptors for the GaDotatate. You may want to discuss it with your oncologist. My tumour was functioning and secreting, so I had some elevated tumour markers (Chromogranin A, CA 19-9, CEA antigen). Good luck! You got this! 💜🦓

Ditto to @pavlina60, you got this, and any other questions we can try to help you, please ask, there are many of us that gone done that path, and hopefully can assist you in this fight. We got u, and you got this!

General question...have NETS. I'm both lungs. The GA-68 Pet/scan. Reference my liver SUV. # was very high.
Had anyone else, dealing with lung,and liver NETS. Had that term used. It was picked up due to my side pain.

@gig666
We can't say what treatment to do, but what we all can say on this site, is you need have a NET Specialist involved, or part of a multi-disciplinary team which directs your treatment. Don't wait, find the assistance you need, either at a Mayo site, or other hospitals having the same type of team with a NET Specialist. My wife is two years in her fight from being diagnosed with NET, with mass on pancreas, and too many tumors on liver to count. Technically, a stage 4 diagnosis. Now she has done the chemo for 9 months, has surgery to remove the primary, and debulked as many of the tumors as possible, finished 4 treatments of PRRT, and have knocked down the NET to much smaller levels and we have options to continue the fight. My message to you, is you can do this, get a good team on your side, start the fight, and beat NET's. You can do this!

Thank you for getting back to me.
UMASS. Net specialist are not helpful. 74 yrs old, said just live a good life 2-3 years.
I want to see my Great-grandchildren, l will fight to do that.
Blessings to you and your Wife!

Gig666, I am somewhat appalled that your docs didn't give you more options rather than just live a good life. However, remember that second opinions are frequently sought in these cases. You can likely even do a video consult with Mayo or another facility.
My NETS were discovered 6 years ago when I had a blockage in my small intestine. There went 10" of that. The following year another blockage - this one in my large intestine. Good-bye 11". I'd been misdiagnosed for 11 years prior to 2018 because mine never showed up on any type of scan - so I can only have the Ga68 Dotatate. And no one I saw ever suspected NETs so never did the right labs.
Anyway, after the first surgery I immediately went on Octreotide LAR injections (and still are). I have small tumors all over and one larger one in my stomach that they say is not removable. So in 2021 I went to Mayo in Phoenix and did PRRT. My condition is considered "stable" and my tumors "non-functioning". I MAY also have IBD-D. Anyway, I'm turning 75 in July and still here. There's always hope and there are always options. I would encourage you to seek a second opinion. You'll never really know if there are options for you unless you do. And remember there are trials going on in multiple places.
You seem to have a "fighting spirit". Keep that up!

Can I ask what exactly NET is? Thanks

Neuroendocrine tumor. When I was diagnosed in 2018, they were still referred to as carcinoid tumors, but have since been put in a larger category of neuroendocrine, or NETS.