Neuroendocrine tumor (NET) vs neuroendocrine carcinoma (NEC)

Posted by mlveal @mlveal, May 5 11:45am

I am sad to report that my dear friend has NEC and not the NET we thought. We have met with the oncology team and she is preparing to have a port implanted so she can undergo the first round of chemotherapy on May 26. We learned that the NEC is a much more fast growing and aggressive cancer than the NET. It is, however, treatable but not curable. I will depart this support group and hope to find one pertaining to NEC (neuroendocrine carcinogen).

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

lindabees | @lindabees | May 6 8:03am

I'm so sorry to hear that. I don't beleive this group is limited to just nets but all neuroendocrine tumors. That being said, there are specifically high grade groups on facebook such as this
https://www.facebook.com/share/g/1HmhkeUj4N/
My prayers are with your friend and you. God bless you for being there for them.

amygirl | @amygirl | May 6 5:45pm

What is the difference?

mlveal | @mlveal | May 6 7:19pm

NETs are what our oncologist called "well-behaved tumors." NECs are much more aggressive tumors and they grow faster. He told us that when the NEC is diagnosed, no surgery is recommended because the cancer is so spread out.

zacharycat | @zacharycat | May 7 7:46am

As I understand it the main difference is differentiation of the cells. NETs are well differentiated and tend. to closely resemble the tumor origin site, while NECs are poorly differentiated and more chaotic in appearance. NETs evidently are less aggressive and respond better to treatment.
I have a grade 3 NET though. Quite aggressive compared to grade 1 or 2, but so far has responded well to treatment. Eventually treatment stops working though, and this happens faster with higher grades.

miracle95 | @miracle95 | May 13 10:17pm

Sorry to hear the NEC diagnosis. Best of luck to you.

Colleen Young, Connect Director | @colleenyoung | May 19 10:25am

@mlveal, I'm sorry to hear that your friend has been diagnosed with neuroendocrine carcinoma (NEC). You are in the right group here. This group includes all tumors and cancer of the neuroendocrine system, including neuroendocrine tumors and carcinomas.

"A neuroendocrine tumor (NET) is a tumor that develops from cells of the neuroendocrine system. Neuroendocrine cells are similar to nerve cells, and they make chemical messengers called hormones. Hormones control how different organs in the body work. Neuroendocrine cells are found all over the body, in organs such as the stomach, bowel, pancreas and lungs.

Tumors that develop from the neuroendocrine cells are known as neuroendocrine neoplasms (NENs). Most NENs are neuroendocrine tumors (NETs). A smaller number are described as neuroendocrine carcinomas (NECs).

Whether the tumor is described as a NET or NEC depends on the grade of the tumor. A doctor decides the grade of the cancer by looking at the cancer cells under the microscope. This gives an idea of how quickly the cancer might grow or spread.

NETs can be non-cancerous (benign) or cancerous (malignant). This information is about malignant NETs. It is mainly about NETs that affect the digestive system." Read more here: https://www.macmillan.org.uk/cancer-information-and-support/neuroendocrine-tumours-nets

@mlveal, you and your friend are also welcome to attend the monthly Zoom meetings hosted by Mayo Clinic. See more info here: https://connect.mayoclinic.org/event/neuroendocrine-tumor-support-group-meeting-zebras-757822a3/

Has your friend had the port installed? How are you both doing?

lindabees | @lindabees | May 19 11:44am

In reply to @amygirl "What is the difference?" + (show)

@amygirl Sorry. My reply was confusing. There are neuroendocrine tumors, or NETS and neuroendocrine carcinoma or NEC. NEC's are more aggressive than nets. NEC's are often treated with platinum based chemotherapy, which NETs don't usually respond to.

zacharycat | @zacharycat | May 20 7:45am

I have a high grade NET. I was treated with both chemotherapy and later with PRRT (NETS may have somatostantin receptors for dototate which NECS usually don’t). Responded well to both treatments, but neither cured me (nor was intended to).
Also determining grades with Ki index seems to be subjective. My biopsy was examined both by University of Michigan and recently by University of Chicago physicians. The first reported Ki 25 while the second was “about 40” (both of course are grade 3).

praisegod13 | @praisegod13 | Jun 5 12:23pm

My understanding (please confirm via medical sources) that there are three "grades" of NECs. Grades 1 and 2 respond better to chemotherapy than grade 3 NECs, which is the most aggressive and likely to become metastatic quickly, There are also small-cell and large cell Grade 3 NECs. Best wishes to you and your friend for finding the best treatment possible and the best possible outcome,

waynepa | @waynepa | Jun 15 9:43am

My 59 yr old husband was diagnosed with stage IVb large cell NEC, many masses in liver and lungs, his liver is 3X a normal liver. First round of chemo went well, he has less pain and has been very active. We are at 2nd round of chemo this week. The port has been great, much better then before the port. Wishing everyone the best.