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British Lung Foundation
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Yes I have langerhans histiocytosis cell

I had surgery 12/2017 for a tumors in my chest on my thymous gland thought it was lymphoma. Came back no cancer. Had my 6 month scans and it grew back. Went in for surgery again Jan of 2018 . Tumor came back this time with langerhans histiocytosis cell . It is very RARE. What I know about it is it can effect your bones your organs and ur skin. It causes bone lessions.which I have in my wrist.i also had my hip fully replaced in 2015 because it was literally falling apart and nobody knew why. Now I know why. I was told to stop smoking because it aggravates it. I had a full body bone scan in scheduled for a brain MRI and a pet scan so they can stage it out. So for me it's cause tumors and bone lesions . I may have to get radiation on wrist and surgery. So as of now that is all I know.

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I am assuming this is affecting your lungs.

"Pulmonary Langerhans cell histiocytosis (PLCH) is a unique form of LCH in that it occurs almost exclusively in cigarette smokers. It is now considered a form of smoking-related interstitial lung disease. Some patients recover completely after they stop smoking, but others develop long-term complications such as pulmonary fibrosis and pulmonary hypertension."


Hi and welcome to the forum. Have you stopped smoking?


So sorry my dear Joyce..I was tested for that when they discovered I had sporadic lymphangioleiomyomatosis, another rare disease.

It was scary. Then there was a relief in a way that

at least doctors had found out what it was and would treat you as best as medical progress allowed and hopefully as painlessly as possible.

Wishing you good medical care and peace of mind xx


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