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Typical Carcinoid Tumor in Lungs
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!
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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There are only about 300 documented cases of DIPNECH which is why most doctors have never heard of it. There also isn’t much clinical data on it. They believe it’s underdiagnosed. I asked the head thoracic surgeon at my local hospital if he was familiar with lung NETs (yes) and DIPNECH (no). I asked him to spread the word. I am being treated by a NETs team at the nearest teaching hospital.
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2 ReactionsHi - NETs are neuroendocrine tumors, formerly called carcinoid tumors. They are either “typical” or “atypical”- typical grow much slower and typically don’t spread, where atypical ones can grow more aggressively. They are different from carcinoma tumors. Most of my doctors know very little about neuroendocrine tumors, they are quite rare. That’s why people suggest trying to find a “NET specialist “. They are hard to find. I had my biopsy and subsequent lobectomy at Memorial Sloan Kettering cancer hospital, and my surgeon thankfully knows a lot about them. He does not yet recommend injection treatments for me yet. If my regular scans show changes or I start having more problematic symptoms, he would likely refer me to oncology. It’s just alarming to realize how few doctors know much about NETs. My pulmonologist had to look up DIPNECH.
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2 ReactionsIf I had symptoms that were bothersome, like your never-ending coughing, I would be looking into it. My symptoms are not that bothersome at this point. The time may come when it becomes more problematic.
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2 ReactionsHi thank you for your reply. I am in Australia. What are the side effects you get with octreotide? I'm out of breath so much most times I have to stop walking just to get to the bedroom etc. Hence I do not go out anymore. Yes a lot of allergies to medications, dyes and colours in them. The 2 meds I take for BP and AF also don't help with my breathing. Also have carcinoma tumors 19mm which were stable in one lung for 22 years but are now on the other side 12mm. They can't use chemo they said will not work offer me a PET scan and maybe depending on the result an injection in the thigh, which MAY help to slow the tumours down. I can't deal with side effects anymore with no results. They didn't address the nodules just that I have hundreds of them and are blocking airways. I don't know what NETs are. I went to 2 different lung specialists privately who sent me to Peter Maclean the largest cancer hospital we have, who offered the injection. The past year I didn't see any doctors what's the point they didn't offer me any hope. Feel a bit of a veggie also just in the house and not able to do much or go anywhere. I did find out my grandfather died of the same thing but he was a very heavy smoker. I didn't take the covid or flu vax I avoid meds as much as possible only what I need. I often wonder if inhaling all these drugs for asthma and all the steroids has caused these problems. I am very happy for you that octreotide has worked for you. Having read about this drug it might be the one they suggested.. I read the med I have for AF I wouldn't be able to take. That's an issue. Looks like they have come up with a tablet form that would make things easier.
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1 ReactionSo 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.
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2 ReactionsIt 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.
@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?
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.
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.
Mine was also found out by a Calcium Heart CT. I did that test just as a wellness protocol I did the first time.
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