1. < Neuroendocrine Tumors (NETs)

Typical Carcinoid Tumor in Lungs

Posted by dzerfas @dzerfas, Jan 17, 2017

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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jukebox42 | @jukebox42 | Mar 10 3:27pm

But what does the octreotide do to you? From what I've found when web searching, it seems to exacerbate the symptoms of the typical lung NET. Mine is located in mid right lung; is operable if I want to take that chance of how I'll be with 2/3 of lung gone at age 83. I'm just trying to control my stress!!!

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1 reply
gprior | @gprior | Mar 10 3:52pm
In reply to @cmc188 "Hi thank you for your reply. I am in Australia. What are the side effects you..." + (show)
@cmc188

Hi 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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I too am in Australia Qld.
Like you I have dipnech, hypertension and AF among other health issues.
Very hard to find Drs who have experience in dipnech here as you said. Would love to compare " notes" with you? Glor

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Zebra | @californiazebra | Mar 10 4:47pm
In reply to @jukebox42 "But what does the octreotide do to you? From what I've found when web searching, it..." + (show)
@jukebox42

But what does the octreotide do to you? From what I've found when web searching, it seems to exacerbate the symptoms of the typical lung NET. Mine is located in mid right lung; is operable if I want to take that chance of how I'll be with 2/3 of lung gone at age 83. I'm just trying to control my stress!!!

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@jukebox42
Sorry you feel stressed. Is this a new diagnosis for you? I posted about octreotide side effects on this thread on 1/7/25 if you page back and read earlier responses. Octreotide took away most of my respiratory issues. It did give me side effects but I prefer those to respiratory issues. I’ve been taking octreotide injections for 4 years and won’t stop unless it stops working. Everyone reacts differently to meds. I tend to get more side effects than average on any med. Other people rarely experience side effects. When you read a list of side effects that is everything anyone reported and does not mean you will have every one of those. Typical lung NET is slow growing and octreotide slows it even more.

What symptoms do you have from your lung NET that are bothersome?

I don’t ever want part of my lung removed either so I understand your feelings about that.

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jhhaas | @jhhaas | Mar 11 11:59am
In reply to @colleenyoung "@lindadee, welcome. When will you be having surgery? How are you doing?" + (show)
@colleenyoung

@lindadee, welcome. When will you be having surgery? How are you doing?

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Ps- I was 74 when I had my right middle lobe removed. Although my tumor was a “typical carcinoid”, it already had low grade malignancy so I was happy for it to be gone. I also have DIPNECH, but at 16 mos post op everything is still stable. Recovery wasn’t fun but so worth it, for me personally

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