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Newly diagnosed carcinoid tumor, facing possible bilobectomy

Hello, all. I was recently diagnosed with a grade 1, typical carcinoid tumor after a bronchoscopy. I met with a thoracic surgeon yesterday, and he's thinking I need a bilobectomy (in my case, the removal of the middle and lower lobes of right lung) due to the tumor's location. I was wondering if anyone has had a bilobectomy and what their recovery process was like. I am only in my mid-thirties, so I have youth on my side, which is fortunate. However, I am scared about having major surgery, and I wasn't expecting the need to remove two lobes. I'd appreciate any input on the matter. Thanks!

  1. @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, Team

    1. 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:" 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: Wishing you the best and please feel free to keep us posted on how you are doing. Richard ( Team)

      1. 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.

        1. Thank you for sharing some of your story with us. It's great to hear your cancer was caught early (yay for screening and early detection!) and that you are doing well. Wishing you all the best, Alisa, Team

        2. @asparker04 I couldn't agree with you more. We need more advocates to speak up for their own care, and though many in the medical community will do their best, we have to include that gut feeling along with a bevy of questions to make the trials that come along with this smooth, Best!

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