PLCH

[Kiwi6]

Hi all,

I have just been diagnosed with Pulmonary Langherhans Cell Histiocytosis. I have been told this is not cancer yet some websites I've looked at say it is cancer. My doctor has said there are only about 8 patients with this disease in Ireland. He also said there will be no treatment for now just to be monitored and go from there. I had lung biopsy last week and they diagnosed from that and a fracture on one of my ribs- no other symptoms. Was wondering if anyone on here had any info for me? Have heard of people having chemo...do I need to get doc onto that? He has admitted he knows very little about it as it's so rare. Thanks in advance.

[Hidden]

Hello..

A very rare disease..I was tested for that but was finally diagnosed with Sporadic lymphangioleiomyomatosis, another rare lung disease.

You should phone the BLF helpline and make an appointment to ask your questions and find out more.

Do take care of yourself x

Fran

[Kiwi6 in reply to Hidden]

Thanks for that..will check it out, due to see my own consultant in 2 more weeks so I'm writing down a lot of questions for him! Wishing you all the best,

Ciara x