Typical Carcinoid Tumor in Lungs

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 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

@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.

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

@jhhaas
I am not sure if I am posting in the correct place. When was your lobectomy? Four weeks ago, I had my RML removed vor a 3 cm typical carcinoid tumor. I had other issues in my lung from a maze procedure that had to be corrected. I had scar tissue and a lung hernia repaired with mesh. The surgery was 6.5 hours and done robotically. I am still in a lot of pain at the incision sites and have nerve pain even near my upper abdomen near my naval. I opted for no narcotics and just 4 gr Tylenol a day. I opted for a Alpha Lipoic Acid instead of gabapentin.

@pekoe01 I had my robotic assisted lobectomy two years ago at Memorial Sloane Kettering. Not sure how long my surgery was, but it started in the morning and by the time I was awake, it was evening. They kept me in the hospital for two nights, with the drain tube being removed on day two. I will say I was extremely uncomfortable for the first several weeks, nothing really touched the pain so I stayed away from the narcotics. I alternated Tylenol and Advil, but would take it half an hour before show the effects of the previous dose would not completely wear off. I also had to get up and walk around the house to help the pain, it sounds counterintuitive, but it did help. It also helped when I realized each week, it was a little better than the week before. But I was able to get out and about a little bit and then come home and rest. But I did not feel safe driving for about two months. It does take time but little by little it gets better. I could not wear a bra for three months, and it felt like there was swelling, pushing on my ribs from the inside, which they probably was. I would say for me that four weeks was a turning point, I felt well enough to take care of myself although I was still not driving. I live alone so that gives you some idea of how I was functioning. Two years later, I still have some numbness Under my ribs on the right side, but I can live with that. It sounds like you had some other issues that I did not have so it may take a little longer for you. I did have that nerve pain for a while, but that has gone away, thankfully. Hang in there, hopefully things will get better as time goes on.

@jhhaas
Thank you so much for your experience. I guess there is a light at the end of a tunnel. I didn't take oxy at rehab and only 2.5 mg at home three times. I took Tylenol, but could not take an NSAID because I'm on Eliquis. I can't take Gabapentin because it would trigger afib which happened during the surgery and it took three weeks to convert back. So all I can do is wait. Thanks again.

I had full surgery not keyhole to remove a 5x3cm typical carcinoid stage 2a 11 years ago. The right lower lobe of my lung plus a bit of bronchi and all the lymph nodes on the right side were removed as well. I had no symptoms and the consensus was the mass had been there for over 5 years. It was found serendipitously through a whole spine xray for chiropractic assessment. Typical carcinoid are not benign, they are malignant but generally indolent and slow growing but mine had spread to the lymph nodes adjacent to it but fortunately no further. I had a PET scan before a bronchosopy with biopsy to confirm pathology and the mass lit up like a Christmas tree. No further treatment has been required and periodic scans have been clear. I was 59 at the time and only used Panadeine Forte for about 6 days post surgery. The surgery takes it out of you for around 12 months - tire more easily - but I was back at the gym in a few months. I have an impressive long, thin scar on my back to remind but that's all. Surgery is curative for early stage typical carcinoids so I was happy to have it removed and wouldn't have liked to watch and wait though I was probably doing that for years unknowingly. Fortunately also I am Australian so all the treatment has been covered by Medicare and the surgeon was a very expetienced Cardiothoracic surgeon. Hope my story helps.

@pekoe01 no problem, glad my experience helped you. The hospital sent me home with oxy, and it didn’t help. I think maybe I took one pill and it just made me spacey, but didn’t take away the pain and discomfort. When I told my doctor he ordered gabapentin, I did take that for about five days but Stopped because it wasn’t really helping the thing that helped the most was the Tylenol and Advil, but ultimately, a little exercise in the form of light walking, and time, was really all that helped it. I could do just about anything after three or four months, but it really took about six months for me to realize I didn’t hurt anymore, just MINOR inconveniences that were easier to deal with. Be patient, healing will come. Best wishes.!

Hello @kiholt, and welcome to the NETs support group on Mayo Clinic Connect. I appreciate you sharing your journey with a typical lung carcinoid. I'm so glad to hear of your successful recovery and that your follow-up scans have been clear. I'm sure you must be pleased.

As you said in your post that your carcinoid was found "serendipitously" when you were having an X-ray for something else, I'm wondering if you were having any symptoms of a lung problem. Had you previously had shortness of breath or a chronic cough?