Typical Carcinoid Tumor in Lungs

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?

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?

Hello @tatteesmom3

I appreciate the follow-up post. I am glad to hear that the surgery is behind you. It is unfortunate, however, that you are having symptoms of shortness of breath.

I hope that the results of the testing will be encouraging. Will you post again after you get the results of the pulmonary function test?

Hello @paulaelliott007 and welcome to Mayo Connect. This is unusual to hear of sisters both having such similar NETs/carcinoids.

The National Institute of Health website has a report on families with NETs/carcinoids. The study was done in Sweden. Here is a link to the article,

--Familial Carcinoid Tumors
https://pubmed.ncbi.nlm.nih.gov/11745428/

Here is some more information, from the same source about lung carcinoids:
--Lung Carcinoid Tumors
https://www.ncbi.nlm.nih.gov/books/NBK537080/

The Carcinoid Cancer Foundation (CCF) has some good information for patients, and you might find it helpful for you and your sister to familiarize yourselves with some of the diagnostic tests and follow-up that the CCF discusses on their website. Here is the link to that website:
--Carcinoid Cancer Foundation
https://www.carcinoid.org/for-patients/

You said that you were diagnosed when being tested for heart disease. If you are comfortable sharing more information, which test revealed the carcinoid in your lungs? I'm also wondering if you were having any symptoms. What type of treatment are you and your sister having currently?

My sister and I both ended up with this in our lung. We, both, found out when doing a check for heart disease. Neither one of us have heart disease. Really weird to both have a carcinoid tumor.

Well had the surgery. I can’t lie anything with the lungs is rough. I’ve been better this 22-23 year. I am actually going to have a pulmonary function test this week, I have noticed a little out of breath after tackling staircases at hotels. I will come back and post my results . My prayers too everyone.

Hello, mine is in left lower lobe, approximately 11cm. Had echo and pulmonary function test yesterday. Have consultation Thursday with surgeon. How do you feel?

Hello @gapsc

When you last posted you were rather uncertain as to what to do about your treatment. I just wanted to drop in and say hello. I hope both you and your wife are doing well.

Will you drop me a note and provide an update?

@gapsc, I, too, would be perplexed in your situation. It can take a lot of energy to continue to asks questions as a patient, but I encourage you to continue to ask why. Perhaps they haven't explained the risks vs. benefits clearly enough. What is your understanding of the potential risks?

Hello Again. I was very hopeful that Afinitor would help. My oncologist was seeking a size reduction in tumor to possibly make resection possible. Although early indications were positive and I was able to tolerate the drug. the Oncologist decided out of the blue that it was not worth the effort or potential risks (news to me). Afinitor was stopped. A suggestion from Dr. Wolin of Mt Sinai in NY was to take Afinitor with the Lanreotide. the two drugs seem to work better. Again Afinitor was stopped. This has thrown me for a loop and the decision to stop that drug almost seems arbitrary. I really do not know what to do. So you asked a great question Coleen. I have sought alternative treatmentas since my initial diagnosis and it seems that unless I get the World Health Organization to back me up the suggestions are ignored. You might think that it is time to go elswhere...only to travel a great distance?.I am in Charlotte NC. I simply cannot afford to hop across the country to get a monthly shot. We are in our 80s and I care for my wife on a daily basis. Novartis the maker of Afinitor has been very kind to me and made Afinitor available. But I guess that may be the story of alternative treatments. You will get your shot and take your chances. there are no guarantees. Live well......be happy......thanks for reading GAP