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Typical Carcinoid Tumor in Lungs

Neuroendocrine Tumors (NETs) | Last Active: Nov 22 7:28am | Replies (64)

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Profile picture for kiholt @kiholt

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.

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Replies to "I had full surgery not keyhole to remove a 5x3cm typical carcinoid stage 2a 11 years..."

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?