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What do I need to know about NETS?
Neuroendocrine Tumors (NETs) | Last Active: Sep 11, 2023 | Replies (43)Comment receiving replies
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
Replies to "I have been diagnosed with stage IV metastatic poorly differentiated NET likely from a primary in..."
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?
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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.