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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
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
Replies to "Had carcinoid tumor removed from lung last year, stage 1 cancer, lymph nodes good. Prior to..."
Hi tatteesmom3, are you seeing a NETS (neuroendocrine tumor) multidisiciplinary team or just a local oncologist who is not very familiar with NETS? I have over 50 typical carcinoid tumors across both lungs and I have DIPNECH. Most doctors have not heard of DIPNECH. Mine went undiagnosed for 12 years after discovering the tumors on a CT scan. I was actually the first one to suggest DIPNECH after my research lead me to a Mayo Clinic study on it. My oncologist had never heard of it. It's very rare with only a couple hundred documented cases, but they think it's underdiagnosed. I just talked to a thoracic surgeon who did a cancer talk and asked him if he had heard of it. He had not. I try to spread the word to doctors and ask them to spread it. It sounds suspect if you have a lot of tumors. Any time something is rare, they will think it's unlikely you have it. Maybe you do or don't, but request to have a NETS specialist on your team. So you live near Mayo or a teaching hospital? They are the only ones likely to have a NETS program. No doctor should be annoyed with you for asking questions. That may be a defense mechanism if he can't answer your questions.
Do you have any long-standing respiratory symptoms like chronic coughing, shortness of breath from walking? Not everyone with DIPNECH does, but the majority do. I did for 30 years. Terrible. Now after taking octreotide injections every four weeks for the last 2 years, it almost eliminated those symptoms and was life changing after just 3-4 months. DIPNECH is mostly diagnosed in non-smoking women in their 50s/60s. They usually have a long history of being misdiagnosed with asthma, COPD, etc.
What are they doing for the tumors in your colon? Are those NETS too? Did they remove them? Good that your other lung tumor is not cancer. How fast is it growing? How large?
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Hello @tatteesmom3,
It is good to hear from you again. I can understand your frustration at not getting an explanation to your question about Carcinoid and DIPNECH. On Connect we have several members who have discussed this diagnosis. I would encourage you to read their posts in order to learn how they are dealing with it.
--New Dipnech Diagnosis, Need Advice on Doctors:
https://connect.mayoclinic.org/discussion/new-dipnech-diagnosis-need-advice-on-doctors/
--Carcinoid Tumorlets...
https://connect.mayoclinic.org/discussion/carcinoid-tumorlets-neuroendocrine-tumorcell-hyperplasia-dipnech/
You mention about your colon as well. How is this being treated?