Benign carcinoid tumor in bronchi tube

Hello @jessie1990, and welcome to the NETs support group on Mayo Clinic Connect. Carcinoid tumors are NETs, and this is a rare form of cancer. Perhaps your doctor was referring to the fact that there were no other tumors found that would indicate metastasis?

There are several discussions on lung NETs. I would also invite others with typical lung carcinoids, such as @jhhaas and @ggiinnaa to discuss their experiences with you. I would also like to invite @californiazebra to this discussion, as she has both lung NETs and DIPNECH.

Here are links to some of these discussion groups.

--Recently diagnosed with a NET in my middle lobe of my right lung
https://connect.mayoclinic.org/discussion/recently-diagnosed-with-a-net-in-my-middle-lobe-of-my-right-lung/
--I am 75 and have carcinoid tumors NET in the lungs
https://connect.mayoclinic.org/discussion/i-am-75-and-have-carcinoid-tumors-net-in-lungs/
--Anyone Have Surgery to Remove Typical Carcinoids of the Lungs
https://connect.mayoclinic.org/discussion/typical-carcinoids/
As carcinoids are rare, one of the most important things you can do when you are first diagnosed is to have at least one consultation with a NET specialist. These are oncologists with special training in diagnosing and treating NETs. Mayo Clinic has NET specialists at all three of their locations (for appointment information, click on this link, http://mayocl.in/1mtmR63.) If you cannot be seen at a Mayo location, here is a list, from the Carcinoid Cancer Foundation, of NET specialists in the U.S. and worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

You mentioned having scans, such as PET, MRI, and CT. Were these whole-body scans or just of the lungs? Were any other blood tests done? Here is a list of many of the tests used for diagnosis and treatment: https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/.

I look forward to hearing from you again. Will you continue to post with your questions and concerns?

Sorry the removal was incomplete. My suggestion is ask (insist) to see a NET specialist for a second opinion because a lot of doctors, even lung specialists, are not very familiar with Neuroendocrine tumors (NETs). I have many typical carcinoids in all lobes and it is a rare form of cancer (1% of lung cancer cases), but don’t let that scare you. It’s very, very slow growing. It’s typical to have one tumor and remove the lobe with the tumor for a one and done surgery and then just monitor you with CT scans for 10 years. You’ll find many people on this message board that have had a lobe with typical carcinoid removed and that was the last of it. Sorry you have to go through this but you’ll be okay. Blessings to you.

@hopeful33250 I've had full body pet scan which was clear

@californiazebra my first lung specialist done a biopsy that was benign then he sent me to another lung specialist which dome a biopsy the same guy removed the 40% which also came back benign but the tumor was stuck to my tube wall so that's why full removal was unsuccessful

@jessie1990 Did any of your pet scans use a contrast? If so, do you know what type?

@tomrennie they injected radiation into me

I had an ademocarinoma tumor removed from my top right lobe and at the same time a carcinoid tumor - et removed from my bottom right lobe. There are several other carcinoids that are being watched every 6 months with Cat scans with contrast. My next one in scheduled for Nov 26. I feel fine. Living a good and normal life. I am 76 and active. Planning a huge family trip to Italy in June - lots of walking I am preparing by actively exercising. With the loss of almost 2 lobes I struggle a bit on stairs but nothing is keeping me down. If any of my future scans show any growth I will find a carcinoid expert for help. The best help is from other carcinoid lung survivors on this site! Thank you all!

@jessie1990
Understood. Still consult with a NETs specialist. Lung specialists are not necessarily NETs specialists and NETs is treated differently than other cancers. I go to a university hospital system 60 miles away because my local oncologist and lung surgeon are not NET specialists. A NETs team that is not local will coordinate with your local oncologist/specialist to make treatment more convenient.

@ggiinnaa.... yes doc told me I will possibly need 2 lobes removed over where tumor is sitting I've had half of it removed on 5th of September this year still waiting on more surgery to be done I don't think there is carcinoid specialist here in Ireland but I will mention this to my doctor thank you so much ❤️

@californiazebra .. I don't no if there is nets specalist here in Ireland but I will mention this to my doctor thank you so much 🤎