1. < Neuroendocrine Tumors (NETs)

Typical Carcinoid Tumor in Lungs

Posted by dzerfas @dzerfas, Jan 17, 2017

I was diagnosed in April 2016 with a Typical Carcinoid Tumor in my right lower lobe, approx. 3 cms. It has remained stable, per most recent CT scan in Dec. I have no symptoms. I am curious if others have been in this situation and if you opted to "watch and wait" or have surgery right away - mine would be a lobectomy of the right lower lobe. Can Typical Carcinoids become Atypical? Blessings to all on this journey!

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 31, 2023
In reply to @tonyhasumners "Diagnosed 1/27/23 lung NET Bronchoscope on 1/24/23 results on 1/26/23 lymph nodes chest ok but nodule..." + (show)
@tonyhasumners

Diagnosed 1/27/23 lung NET
Bronchoscope on 1/24/23 results on 1/26/23 lymph nodes chest ok but nodule atypical carcinoid NET grade 1. Lung Dr positive for treatment with surgery robotically. Oncologist however is concerned with metastasis as 2 nodes lit up in my neck on PET scan. Is that usual for metastasis?

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Hello @tonyhasumners and welcome to the NETs discussion group on Mayo Connect. I moved your message to this existing discussion group on carcinoids in the lungs. We have other members who have discussed carcinoid in the lungs such as @rogo @melmangen and @coco1, whose husband has lung NETs.

I can understand your concerns as two different doctors are offering different opinions on treatment. Have you considered getting another opinion prior to any decision on surgery?

The Carcinoid Cancer Foundation (CCF) has a list of specialists who work specifically with NETs patients. Here is a link to the website listing these specialists,
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Mayo Clinic has NETs specialists in their three locations (Minnesota, Florida and Arizona). If you would like to get a second opinion from a Mayo doctor, here is a link that will help you to request an appointment, http://mayocl.in/1mtmR63. If traveling is not an option for you, virtual appointments are often available.

How are you feeling now? Are you having shortness of breath or other symptoms? Have you considered getting a second opinion?

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