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?

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 @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 @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.

Mine was also found out by a Calcium Heart CT. I did that test just as a wellness protocol I did the first time.

Mine was found incidentally on a coronary CT, then pet scan showed malignancy in RML, along with multiple tumors/tumorlets in multiple lobes. MSK biopsy revealed carcinoid tumor. RML lobectomy revealed it was “typical “ carcinoid/NET, and that I had DIPNECH. Shortness of breath on exertion was my main symptom, which still exists. Prior to dx, I had recurring chest infections, tested positive for allergies, and now take allergy shots. It helps my main symptom of mucous in sinuses, but I’m regularly clearing it from my chest and throat. Now I know why. I have not yet needed any of the treatment shots, after a year post lobectomy. Still get scanned and meet with my MSK doctor twice a year.

Funny you mentioned allergies. I had Hayfever when I was in grammar school and gradually outgrew it by the time I was 18. This past Spring and up until a month ago I had been sneezing and had itchy eyes. There must be a symptom of Carcinoid. Other than that no symptoms.

@jhhaas
I’m curious. You listed a lot of symptoms but said you haven’t needed treatment shots that could relieve so much of that as it did for me. Life changing. What is your criteria for needing shots? I can understand if you fear side effects because I decline a lot of meds due to that. But the octreotide injections have taken away my chronic cough, constant mucus, improved shortness of breath and has even improved all my animal allergies and fragrance and flower sensitivities as an added surprise. I’m petting animals for the first time in decades but still don’t hold them or touch my face after petting. The side effects are so much better than my DIPNECH symptoms were — to me at least. Would anything make you want to try octreotide?

It is interesting, isn’t it? However, I didn’t have those allergy symptoms like sneezing, etc. several years ago I got a super super bad cough that would not go away despite multiple antibiotics. My doctor kept saying maybe it was allergies so I finally let her test me. I was about 70 years old and for the first time ever had allergies! The theory was that it was producing the postnasal drip and causing infections in my lungs. They put me on one type of allergy shots for about a year, but the allergies were still showing up on testing so then they put me on Fasenra shots, which really is for asthma, but apparently also helps with certain allergies. It works by reducing the eosinophilic count. Since starting it, I still have to clear my throat and occasionally taken over-the-counter decongestant, but I have not had a cold, a flu, Covid, or any kind of illness aside from my lung NETS. And I feel about the same as before I got sick with the really bad cold and cough five years ago. It’s my guess that most of the symptoms were probably coming from the developing DIPNECH.

So have you considered octreotide injections for the DIPNECH? My allergy issues are respiratory. I was told it’s not the 50+ tumors we can see on the CT scans that cause the symptoms but the hundreds or thousands of tiny nodules lining my airways that don’t show up on scans that cause it. This is based on my pulmonary function testing and just knowledge of the disorder. My constant coughing and other symptoms drove me and everyone around me nuts for 30 years. It was like neverending bronchitis.