What do I need to know about NETS?

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

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

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?

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?

Hello @vinnie694

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

thank you, the film was very, informative! my name is Debbie and i was dx in 2019 for a neuroendocrine tumor. i have a EUs and CT scan done every year. the tumor is on the tail of my pancreas. I'm a little confused about how this tumor is growing. my doctors tell me it is slow growing. it has gone from 7mm in 2017 they couldn't find my records to compare the sizes. i had another eus and ct scan in o1/24/22 the pancreas tumor was 1.2x0.9 the doctor said it was 1.1 in 01/2021 in 2022 it was 8.5 mm also he said there was a 10mm homogeneous round nodule off the tail the pancreas consistent with accessory spleen. in 09/2022 he said there were unchanged findings of a 7mm march 16 2023 the doctor said it had not changed it was 11 mm i dont know what to think. i have a history of breast cancer and skin cancers. thank you

Hello, I had a 6.8cm pheochromocytoma and had a right adrenalectomy March 17th. My scans do not show metastasis to other organs but pathology shows invasive cells. Where do I go from here? My primary doctor is sending me to talk to our local cancer doc. I want to be proactive and if there are meds to take to try to suppress further tumors, I want to find these. Do I need a neuro endocrine tumor specialist? I live in a rural areA- my primary has only seen pheo once on med school. I just want to do everything I can to keep well for as long as I can.

Hello @deb1955 and welcome to the NETs discussion on Mayo Clinic Connect. I am glad that you found the video helpful. Are you having symptoms of Carcinoid Syndrome now?

I can certainly understand your confusion about the information you are getting. Understanding cancer is difficult enough, but when you are dealing with a rare cancer, like NETs, it becomes even more difficult.

While I've had three surgeries for NETs, mine have not been in the pancreas, but we do have several members who may be able to share their experiences with you. They would include @kim1965 (his wife recently had surgery for NETs and he is most helpful in responding to others about her experience), also @rockchick, @smt, @outlawcancer, and @ahtaylor.

What type of scans and other diagnostic tests have you had for NETs? Have you had any treatments yet, such as surgery, monthly injections, PRRT, etc.?

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?