What do I need to know about NETS?

Hi @tatteesmom3 , I see a thoracic oncologist who is part of a NETS team at UCLA. He orders my octreotide Even more often I see an interventional radiologist at UCLA who did the microwave ablation to destroy the largest tumor. I love that he follows my case and we talk after each scan. My local pulmonologist is not that interested. Also, my local breast cancer team has tumor board meetings but they don’t know about NETs which is why you need a NETs team. Feel free to private message me if you need more info about DIPNECH.

I have been diagnosed with stage IV metastatic poorly differentiated NET likely from a primary in GI tract with disease metastatis to the chest wall. The chest lump was first observed sometime in 2015. Surgery of lump was done in Pakistan on 27 March 2023. Pathology report found Ki 67 (40-45)% and CDX2 positive. A repeat pathology test in Singapore General Hospital found Ki 67 (15-20)%, CDX2 positive. GA 68 scan done on 05 May didn’t find any spread. Last 2/3 weeks I was feeling neck aches on the back side. An Ultrasound was conducted on 06 July and an oval shaped soft tissue density nodule was found measuring 0.8x0.3 cm. Ultrasound finding suggested benign lesion. Could it be a sign of further spread? Any suggestions? Also where in the US, I may get the best treatment? Ahsan

Hi @habibahsan

Sorry to hear about your stage IV NET diagnosis. I just watched a good new presentation from a NET surgeon in Denver, Colorado. His entire facility there is dedicated to NETs. He's very down to earth and just tells it like it is. I've watched several of his presentations in the past 3 years. There are lots of NETs programs throughout the US. LACNETS.org is one good resource for NETs info. Mayo has a NETs program. Here is the link to the surgeon's presentation -- Dr. Eric Liu. This is a great presentation for everyone to watch to hear one more treatment/surgery philosophy.

Hello @habibahsan and welcome to Connect. I'm so sorry to hear of all of the physical difficulties you are having now. I can certainly understand your concern in finding a good treatment plan.

My journey with a NETs diagnosis, of the upper digestive tract, began in 2003. I've had three surgeries since then. So, at this point I am a 20-year survivor of NETs and doing OK. There are so many treatments to slow NETs growth and to help with the symptoms and a NET specialist would be your best choice. Once you consult with a NETs specialist you will learn about which treatment would be best for you.

I am not a medical professional, so I can't answer your specific questions, but I do understand your concern. I would definitely recommend that you see a NET specialist. Mayo Clinic has three campuses in the U.S. (Florida, Minnesota and Arizona) that have excellent NET specialists. Here is a link to appointment information including information for international patients, http://mayocl.in/1mtmR63

Also, here is a list of NET specialists, worldwide. After the U.S. doctors are listed, there is a list of international NET specialists.
--Find a Doctor:
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
I would urge you, like @californiazebra, said to learn as much as you can about this rather rare type of cancer and to visit a NET specialist as soon as you can for a consultation.

I look forward to hearing from you again. Will you update me with any other questions or concerns?

Dear Zebra, thank you so much for the info and link. Listening to Dr Eric. Most were unknown to me. Ahsan

Dear Teresa, so grateful to you for sharing the invaluable info. I will of course keep you posted as soon as I can make an appointment.

New to this forum. Had total bowel blockage which was found to have been caused by NET (they removed 9 inches of my intestines about a month ago). Official language:Metastatic Carcinoma/tumor with Neuroendocrine Features. Partially removed that tumor, but also found NET in lymph nodes and around liver. I'm getting my gallium arsenide PET scan this week.

I found the video very informative, so thanks for that. Looking forward to finding out more and getting thru this process.

Hello @chazzf and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum, it really helps to learn from others who share this rather rare diagnosis. As you probably know, NETs are a rather slow growing cancer and often difficult to diagnose. I had my first surgery for a NET in the upper digestive tract in 2003 and my last surgery was in 2016, which makes me a 20-year survivor.

I am glad to hear that you will be getting a Gallium PET scan. This is one of the best scans in detecting these very small lesions. Here is some information about the Gallium scan,
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
Generally, after surgery of the digestive tract, we tend to eat smaller meals, and feel full quicker than prior to surgery. Is this true of you as well?

I wish I'd seen this video a year ago after being diagnosed with a PNET. I kept looking for exactly this kind of plain talking about this rare disease. I just had a distal pancreatomy to remove a 1.8 NET. Saved the spleen. Everything went well so far.... Its been 5 weeks. Thank you for posting this video🙏

So glad that you found this video helpful. If you go to YouTube you will find many videos from the Carcinoid Cancer Foundation (CCF) with lots of educational videos. You can sign up with CCF to receive a weekly newsletter that will inform you of upcoming FaceBook Live discussions where you can submit questions.

Here is the YouTube channel:
https://www.youtube.com/results?search_query=carcinoid+cancer+foundation
I am also glad to hear that you are recovering well from your surgery. Do you have any suggestions for others who are facing similar surgeries?