Newly diagnosed carcinoid tumor, facing possible bilobectomy

@asparker04 Sorry you were diagnosed, but good that you are a surgical candidate. I have friends who have had their whole lung removed and are thriving. I had my right middle lobe removed and a section of my lower left lobe removed and my oxygen level is great. It takes time to heal, but you do have youth on your side! I was 43 when I had my first surgery. I hope others with experience can offer more. Wishing you all the best, Alisa, LungCancer.net Team

Hi . Sorry to hear about the diagnosis, but it is good that it is grade 1. I found this article which notes that "For patients with localized lung neuroendocrine tumors (NETs), surgical resection is the preferred treatment approach, assuming adequate pulmonary reserve:" https://www.uptodate.com/contents/lung-neuroendocrine-carcinoid-tumors-treatment-and-prognosis. Of course, each case is different and it is often prudent at the time of diagnosis to get a second opinion (see this article for more on second opinions: https://lungcancer.net/living/second-opinion-timing). Wishing you the best and please feel free to keep us posted on how you are doing. Richard (LungCancer.net Team)

I had a lobectomy 6 years ago wherein my right mid lobe was removed and a bit of the top lobe. Since it was small, contained, etc., no chemo was warranted as it was removed completely. I was xrayed every 6 months, with a yearly scan for 5 years. Surgeon no longer follows me. I am now only followed by my pulmonologist. I feel I have been blessed and for that I am grateful. Surgery was done robotically and pain was manegeable. My advice is to have the nodule removed BEFORE it become cancerous. My small nodule was watched for 3 years, after being accidentally discovered. Then when it began to change, and had by then, become nonsmall cell adenocarcinoma, removed. Two broncoscopies done previously revealed nothing, etc., In hindsight, I wished I had followed my sixth sense, had it removed when it wasnt yet cancer, and not listed to the advice of my doctors who recommended I wait since it wasnt cancerous and why remove a shunk of healthy lung. My advice is to listen to yourself. You know your body. At all times be your own best advocate.

Just an update: Thank you for your comments and encouragement! Over the past year, I've been treated with photodynamic therapy (PDT). Unfortunately, it wasn't able to get rid of the tumor, so I'm back to being a candidate for a bilobectomy. The pathologist noted some "micronodularity" in my right lower lobe as well. Plus, I have chronic bronchitis, possibly from the irritation of all those bronchoscopies and PDT. I was hospitalized in July with a lung infection. It's been a rollercoaster of emotions for me, and I'm curious to know whether the diagnosis is the same. I have an appointment with the thoracic surgeon next week. He says surgery is my only option at this point.