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    User: Harleykitten

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    Sedonalover wrote on Harleykitten's wall

    I was 48 when they diagnosed me with the carcinoid lung tumor. They thought it was on the lining of my heart but thank God it wasn't, just in my right middle lobe so they did the thoracotomy and removed just my RML. That was in March 2012. I had to have a colonoscopy to make sure it wasn't in my bowel also since this kind of tumor is often in the bowel. I was ok while I was recovering but recently become depressed, not sure why. Maybe because I finally had it sink in what happened to me. I have had one CT since then and it was negative. No chemo or radiation since my surgeon , pulmonologist, and oncologist said that surgery is the only treatment. What have you experienced so far??

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    • Harleykitten's Avatar
      Harleykitten

      They found mine in my right mainstem bronchus during a CT scan from a motorcycle accident in June 2012. Initially they "thought" it was NSCLC and they needed to remove the entire right lung but when the final pathology came back from the bronchoscopy it showed as carcinoid. I broke my pelvis in 4 places so I have had a lot of healing to do before they would address the tumor. I am finally out of the wheelchair and beginning to walk as of now. I went to a local onchologist who did the ocreotide scan and it only showed the lung was affected. I also had the 24 hour urine, calcitonin, gastrin, and chromagranin A tests. All came back ok with the exception of the chromagranin A which was elevated. They told me this means it has not spread. I had a colonoscopy about 4 years ago and it was ok. I went to Cleveland Clinic September 12 for a consultation with a thoracic surgeon. I was told locally they did not have a lot of experience dealing with this type of unique tumor and to go to Cleveland. I am now awaiting instructions regarding additional testing they want to do. Cleveland wants to do their own bronchoscopy with biopsy, PET, and a lung scan. When I went up there they did a PFT and a DLCO. The PFT was fine and the DLCO was slightly decreased which is conclusive of an obstruction. The thoracic surgeon said he was going to to a sleeve resection if possible but I might lose my right lung. So I guess they are still evaluating my situation. In your case, how are you feeling post lobectomy? How is your recovery coming along? Any short of breath issues or soreness in the thoracatomy area? Thank you for replying. Your case sounds similar to mine. They are thinking thoracotomy and no chemo or radiation also. I had no symptoms and no carcinoid syndrome. However, the tumor (which I have lovingly named "big Bertha") is 3 x 3.5 x 4 cm and is quite impressive according to the oncologist and thoracic surgeon. I think the word impressive is an oxymoron. :)

      about 5 years ago
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    Sedonalover wrote on alittlefield's wall

    Did you have a thoracotomy ? How long did you have pain after the surgery? Did you have depression once it sunk in that you did have cancer?

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    Sedonalover wrote on doglady's wall

    What kind of lung cancer? Do you have numbness and pain on and under your breast? What kind of complication frm the chest tube? Any depression?

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    • doglady's Avatar
      doglady

      I had non small cell squamous cancer. I still have trouble with pain behind my breast towards the end of the day. I can't wait to take by bra off when I come home from work. I did have some depression after my surgery, but getting back to work really helped with that. I am a therapist, so going back to work gets me out of my own XXX. My complication involved getting some of the stitches ripped out when they took the tube out and the air leaked into the interstital space in my face and neck which swelled up making me look like a freak! They did an emergency surgery and put the tube back in and the swelling went down. They had to leave it in for a few weeks to make sure I was completely healed before they took it out again. I was told that isn't very common.

      about 5 years ago
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    Sedonalover asked a questionLung Carcinoid Tumor

    Has anyone had carcinoid tumor of the lung and had a thoracotomy to remove it? Need to see if anyone is going through what I am.

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    • afmom9's Avatar
      afmom9

      Also, there is a FB page called Lovable Lungnoids (http://www.facebook.com/groups/299612686794289/) which is a support group for nothing but this type of cancer by survivors and a few caregivers.

      about 5 years ago
    • Steffenqueen's Avatar
      Steffenqueen

      I had a thoracotamy in early MARCH? HAVE HAD CHEMO AND brain radiation since then. I was dx with small cell lung cancer and had my rt loer lobe removed. Still on oxygen.

      about 5 years ago
    • Harleykitten's Avatar
      Harleykitten

      I am awaiting scheduling of removal of my carcinoid lung tumor (right mainstem bronchus). Just curious how you are doing. Was it central or peripherally located? I am very nervous and scared. Any input you have is greatly appreciated. There is not much info out there on carcinoid lung tumors as it is very rare as you know.

      about 5 years ago