Typical Carcinoid Tumor in Lungs

Hi @cmc188
I have 50+ lung NETs tumors across both lungs. I also have DIPNECH (really rare) which causes so many tumors. Mine are very slow growing but I had a chronic cough, mucous and shortness of breath for 30 years. The tumors were discovered on my first CT 16 years ago but not diagnosed until 2020. I’ve been taking monthly octreotide for 4 years now and it has changed my life with an incredible improvement in respiratory symptoms. It has even helped some of my respiratory allergies and sensitivities. It took a few months to get there though. I have side effects but the trade off is so worth it.

I had my largest tumor (2.6 cm) destroyed with microwave ablation almost 4 years ago. I have regular CT scans to monitor the growth of others.

I agree with Teresa that you need a NETs specialist. Most other oncologists or thoracic specialists know little about NETs and it’s not treated like other lung cancers. You may have DIPNECH too given your innumerable nodules. Mine took too long to diagnose because my medical team was unfamiliar with DIPNECH and NETs. A NETs team will likely want to do a DOTATATE PET scan specifically designed to see any other possible NETs in your body.

I noticed your British/Canadian spelling of tumors and nebulizer. Are you in the US or have access to the NETs specialists that Teresa supplied?

I don’t know anything about Blushwood Berry. Proceed with caution because people can make a lot of claims about natural cures without having to prove anything.

Please let me know if you have any specific questions. Best of luck.

Hello @cmc188 and welcome to Connect. I would like to introduce you to @californiazebra and @triveraderubio, who have also dealt with many lung NETs.

I would heartily recommend that you get a second opinion with a NET specialist. A consultation with a NET specialist might provide you with more options for dealing with the current tumors as well as the shortness of breath. Here is a list of NET specialists, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

I know nothing about the tincture that you mentioned. I would hesitate to use it unless you get the approval of your oncologist.

Besides the shortness of breath, what other symptoms are most bothersome for you?

Hi, I've been told I have a few lung carcinoma tumours and so many nodules too many to count. The cancer specialist said Chemo would be useless for me and I may be able to take this injection in the thigh once a month which may slow it down. It seems this type I have is slow. I had one tumor in my left lung for 20 years which didn't move but now it's in the right growing. So many side effects with this medication and I already have AF with side effects from the meds which make it harder to breathe so I have declined. As well as asthma. I have come across Blushwood Berry tincture which has been found to help a lot of other types of cancer. I was going to use it in a nebuliser but unsure if it's ok. Has anyone heard or used it before?

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?