Frequently Asked Questions

What are the signs & symptoms of NETs?

Flushing; frequent diarrhea (> 4 loose stools/day); wheezing; telangiecstasia (facial red spots); chronic abdominal cramping, pain and bloating; joint pain; fatigue.

How rare is this disease?

The incidents of NETs is 3.6/100,000 persons. It actually occurs as frequently as testicular cancer, Hodgkin's Disease, gliomas (brain tumors) and multiple myeloma. (Modlin, et al, 2013) - The general professional consensus is that because NETs presents as so many other health disorders, and as such, causes misdiagnosis, the disease may not be as rare as previously thought.

What are the current diagnostic tests available to identify NETs?

Diagnosis of NETs is based on:

  • Clinical symptoms
  • Hormone levels - CgA; 5-HIAA (metabolite)
  • Radiological and nuclear imaging - CT
  • Histology - Ki67
  • Molecular - NETest (Wren Laboratories, LLC)

What are the current conventional therapies available to NETs patients?

  • Surgical excision of tumor with resection of primary site
  • Radiofrequency ablation
  • Hepatic embolization (with chemo or bland spheres)
  • Chemotherapy
  • Octreotide analogs via injection

Is there a cure for NETs?

While some types of tumors have been evidenced not to metastasize, those are the exception to the rule. Predominantly there is no known cure for NETs.

What studies are currently underway and how would I know they are right for me?

Yes, please contact Mark Kidd, Phd, DABCC ( or 203-208-3464) for more information.

What if I have an unknown primary? How do I manage my mets?

It is of utmost importance that you partner with a NETs specialist in the management of your disease. When the primary is unknown, the focus of treatment(s) turn toward the metastatic disease. Therapies are then decided based on the site of metastasis; the clinical symptoms; the tumor burden (amount of tumor) as well as the staging, differentiation and activity of the metastatic disease.

Is there such a thing as a surgical cure?

There have been cases of surgical removal of a Neuroendocrine Tumor (NET) tumor without further occurrence of the disease (i.e. appendix; ovary), however, it is very difficult for the surgeon to obtain "clear margins" when excising NETs as the disease usually remains present in the organ tissues at a molecular level.

Where may I find and access the most current literature?

Please visit our Resource Library for the most current literature.

Is there such a thing as a Neuroendocrine Tumor (NET) Center for Excellence?

Yes, please contact Mark Kidd, PhD, DABCC ( or 203-208-3464) for more information.