What do I need to know about NETS?

So informative and helpful! Thank you so much!

Fortunately I don’t really have any negative reactions to the Lanreotide injections, just the day after mild diarrhea..

I was diagnosed with NETs in November 2015 following small intestine resection surgery. I have been on sandostatin injections every-28-days since April 2016. The injections seem to be controlling the growth of the tumors I have, primarily in the spine and bones. I am grateful.

I don’t know if I would call it a side effect of the cancer but I have carcinoid syndrome which is a symptom of the NET’s, it’s a facial flushing , no sweat, just intense heat..

Hello @vinnie694

If you would like some more information about carcinoid syndrome, this video might help explain it.

Thank you

I was very recently diagnosed with Merkel Cell Carcinoma. All of you sound very knowledgeable and I am so confused. Does the cancer I have fall under the category of NETs? Next week I have a PET scan and the following day I have 3 doctor appointments. One of my doctors said this cancer (that I have) is very aggressive. Is that true?

Hi Rose830, I had to look up Merkel Cell Cancinoma as I'm not familiar with it. It does say it's a rare skin cancer that is a neuroendocrine cancer, so yes NETS. When I searched it on a NETS website, I was redirected to the merkelcell.org website specifically about that cancer. What makes NETS cancers unique is that there are so many types and even people with the same type can have different treatment plans based on their case details. As for aggression, NETS cancers can be slow growing or aggressive. You'll need your oncologists to explain the details of your case and treatment options. That's great that they are scheduling all of your appointments quickly. It sounds like they are on top of it. It's good to be educated though so you can be your own advocate and ask the right questions. You definitely should have an oncologist that has treated merkel cell before as part of your cancer team even if just an advisor from afar. You may need to reach out to Mayo or a teaching hospital to find a merkel cell oncologist. Prayers for you.

Note: My lung NETS is slow growing, but my breast cancer returned 2.5 years ago in my chest wall and I was told it is highly aggressive this time. I was told if I did nothing, it would be everywhere in months soooo I did something. I've been on various treatments for 2.5 years now and always will be, but I still have a good quality of life. There are so many cancer treatments these days with more being developed every day that some cancers just become and chronic disease. Dealing with cancer is just my new normal like all my other ailments.

Hello @rose830 and welcome to Mayo Clinic Connect. As @californiazebra said, I also had to look up this type of cancer. On Mayo's website, I found this information:
--Merkel Cell Carcinoma
https://www.mayoclinic.org/diseases-conditions/merkel-cell-carcinoma/symptoms-causes/syc-20351030
I would encourage you to read the information (even if you don't understand it all) and at least become familiar with this diagnosis. That way you can ask good questions as you meet with doctors about treatment.

In the first paragraph of the article it says, 'Merkel cell carcinoma is also called neuroendocrine carcinoma of the skin." A couple of paragraphs later it says,

"Merkel cell carcinoma tends to grow fast and to spread quickly to other parts of your body. Treatment options for Merkel cell carcinoma often depend on whether the cancer has spread beyond the skin."

Has a biopsy been done yet?

Had carcinoid tumor removed from lung last year, stage 1 cancer, lymph nodes good. Prior to surgery had petscan showed many tumors both lungs. I also have another larger tumor In other lung not cancer. Dr said just going to watch via Ct scan. Biopsy results also say doesn’t look like dipnech? But going to watch? Dr annoyed with me because I asked what is the difference between carcinoid and dipnech? I might add I have in colon too. Thank you