Neuroendocrine cell tumor

Posted by 1peg @1peg, Mar 20 1:15pm

I have had non-alcoholic cirrhosis of the liver for 7 years. I’m doing really good but after a lung biopsy last week, I have also been diagnosed with neuroendocrine cell tumor. A Pet Scan next week will show if it’s spread. I’m scared and a bit freaked out. Any advice?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

jlsgt | @jlsgt | Mar 20 3:50pm

Neuroendocrine or NETs its called is rare. There are some good discussions about lung nets here. You and your medical team should know a lot more about your NETs cancer after that pet scan. Best of luck to you.

Teresa, Volunteer Mentor | @hopeful33250 | Mar 20 3:52pm

Hello @1peg and welcome to the NETs support group on Mayo Connect. Connect is a good forum for anyone with NETs to find encouragement, support,, and education about NETs. We have several members who have NETs in the lungs. Here are some discussion groups where you will find
https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/
I would also like to introduce you to @llwortman and @califoniazebra who have discussed lund NETs.

@1peg were you having symptoms of a lung problem when you were diagnosed?

1peg | @1peg | Mar 20 5:30pm

In reply to @hopeful33250 "Hello @1peg and welcome to the NETs support group on Mayo Connect. Connect is a good..." + (show)

No symptoms but I did have a chronic cough for about 3 months before diagnosis.

Zebra | @californiazebra | Mar 20 5:50pm

In reply to @1peg "No symptoms but I did have a chronic cough for about 3 months before diagnosis." + (show)

Did they tell you any details like typical carcinoid or atypical? Size?

1peg | @1peg | Mar 20 7:58pm

In reply to @californiazebra "Did they tell you any details like typical carcinoid or atypical? Size?" + (show)

I’m waiting on my pet scan to on the 31st. Then I have an appointment with the surgical thoracic oncologist 4 days later to find out results.

Zebra | @californiazebra | Mar 20 10:31pm

In reply to @1peg "I’m waiting on my pet scan to on the 31st. Then I have an appointment with..." + (show)

Okay. Please update us when you know more details. In the meantime, know that lung NETs is often very, very slow growing and treatable. I’ve had it for 30+ years and it hasn’t spread from my lungs. I’m doing well and take a monthly injection to manage respiratory symptoms.

Lots of other people have had their NETs tumors removed and that was it, no other treatment. Many good stories out there.

Lung NETs is different from other types of lung cancer and the treatment is different so you should always consult with a NETs specialist. Mayo, university hospitals and other cancer centers will have them. The moderator can add a link for NETs specialists.

Do not hesitate to get a second opinion from another NETs specialist if you feel at all unsure about your treatment plan.

The waiting game is always stressful. Hang in there!