langerhans cell histiocytosis

[ace1988]

Hello,

Any adult been diagnosed with langerhans cell histiocytosis? Would love a chat

[Shona44]

My husband was diagnosed earlier this month with LCH. We know it is in his pituitary stalk as he has diabetes insipidus as a result. Also a lesion in his mastoid cavity which is causing a lot of pain. He has a head CT scan booked for tomorrow and an appointment with an oncologist at Christie's next week. (If you're in the UK you'll know what Christie's is, if not, it's the largest cancer treatment centre in the north west).

It's taken 18 months to get to this point, repeated MRI scans, biopsy, 4 consultants etc.

How about you?