Typical Carcinoid Tumor in Lungs

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

@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.

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

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!!!

I can only answer for lung. If you have a carcinoid tumor in your lung, the monthly octreotide injection slows the growth of the tumor.

1tumor.
I have a carcinoid tumor in the Centrist part of my body and it is inoperable by my surgeon.
If you have such a tumor please tell me what you are doing.
Mine is growing real slow and I have not done anything will check in June of this year to see if it is still growing slowly. Do not know if left alone will it masstify.
People are commenting but are talking about treating other than carcinoid tumors.
If you suggest certain treatments and throw out the treatment, define what the medicine is going to do. They have suggested a shot once a month and I see people getting a shot once a month with different medications.
I need clarification and I am confused with people talking about their cancer. Thanks
GOD bless
Sorry,I wanted to post this could not find the entry point

Mine is in the Centrist, cannot be operated on, am waiting to see how fast it grows before taking shot. it is inoperable

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

I’m opting for surgery, I’m 72 and don’t relish it but do t want to wait for it to spread.

@cmc188
I don't blame you for not wanting side effects without any benefit. I have had so many adverse reactions in my life, I almost always say no to meds out of fear. But, I felt I had to try octreotide and I'm glad I did. I started taking two breast cancer meds 2 months before octreotide so sometimes it's hard to know which med to blame for a side effect. Octreotide caused me more fatigue (but I still enjoy my life), some hair thinning (not bald by any means), lower blood pressure (your doctor may need to adjust your current blood pressure meds while using octreotide), lower heart rate and spikes in my blood sugar. The trade off is worth it to me to get rid of most of the respiratory issues. I can still get a little short of breath when walking, but nothing like before. I can walk for 3-4 miles so long as I go at a slower pace.

I get the octreotide 30 mg injection every 28 days in my glute. It's thick so they have to do it right for it to absorb. You need a NETs specialist so they are used to giving the shots.

I have afib, but have refused meds. My cardiologist never said I couldn't take certain afib meds with octreotide. Get another opinion on that.

Inhalers over the years always made my coughing worse and didn't relieve my shortness of breath. They thought it was asthma, but it was DIPNECH.

Please don't feel hopeless. If you do, you need a different team of specialists. You said your grandfather died of this and was a heavy smoker. Did he have lung NETs or another type of lung cancer more typical to smokers because that is much, much worse. Typical carcinoids and DIPNECH are not caused from smoking. My brother had non-small cell lung cancer (not NETs) and he never smoked a day in his life, died at 48. My experience with NETs has been very different that his kind of lung cancer. He had no quality of life once diagnosed. I have lots especially since taking the octreotide injections for 4 years now. I think it was about 2 months to start seeing a benefit and a few months to get the full benefit of octreotide. You can always try it for a few months and then stop if you don't see any benefit. Side effects usually improve some over time.

Also, if you have a DOTATATE PET scan and they determine you don't have somatostatin receptors (like me), know that octreotide still works! They did say I would not be a candidate for PRRT.

If you're just feeling hopeless, staying in the house and not enjoying life right now then what do you have to lose by trying octreotide? Octreotide also slows tumor growth and you don't want the tumors that are blocking airways to keep growing.

It might be good to get a second opinion outside your current team of specialists. It probably wouldn't be covered to use a US doctor and I'm not sure what your financial status is, but it you can afford it, you might consider paying cash just for a second opinion and suggested treatment plan. DIPNECH is so rare that may NETs specialists may not even be that familiar. The NETs specialist that seems to take the most interest in it (from what I've heard) is Dr. Robert Ramirez at Vanderbilt University in Tennessee, USA. You could likely set up a video visit with him once he had the necessary records. He has several videos on youtube including ones on DIPNECH. Mayo also has great NETs specialists. Best of luck to you whatever you decide.