Good afternoon all,
Forgive me if this is not the right section, but I’m wondering if any of you has experience with PLCH?
I have stage 4 indolent NHL and a few weeks ago I had a series of heart scans due to repeated episodes of chest and side pain. The scans were fine of my heart, but I’ve received a letter stating that a CT scan suggests multiple thin, well defined cysts in both of my lungs, which is suggestive of PLCH.
I’ve never heard of this and although my GP has been asked to refer me to a respiratory team, I’ve had no contact from anyone other than this letter and I’m unsure whether I need to be concerned?
I did email my Haemotology consultant on Sunday evening but as yet have had no response.
Anyone dealt with this before?
best wishes to you all,
Justin
Hi Justin and no problem you posting in this group and yes, I did have to Google PLCH 
Respiratory like many other medical areas is a very specialist subject. I have Asbestosis and have dealt with my Respiratory consultant for a number of years now who just happens to be a good family friend and the whole area of the lungs is complicated.
You do need to be seen by a Respiratory Consultant as this is the only way you can find out what you having PLCH means to you.
Get in contact with your GP and ask about the progress of the referral, is there information on the letter that you can use to make some contact, find the contact info for the Respiratory Department and just ask if you are in the system....... I will say that Respiratory Consultants are extremely busy at the moment due to the ongoing pressures dealing with post COVID symptoms.
Good morning Jai, it’s time to get your pointy elbows into the doors of the system.
We often have to be our own advocates at times - keep pushing for answers.
Good news Jai, let’s look for answers and a always forward to be found, do get back with how things go.
Hello Justin 
I did some research and this is what I found for you:
Pulmonary Langerhans cell histiocytosis (PLCH), previously called eosinophilic granuloma of the lung, pulmonary Langerhans cell granulomatosis, and pulmonary histiocytosis X, is an uncommon cystic interstitial lung disease that primarily affects young adults [1-5]. It is caused by a disorder of myeloid dendritic cells.1 Apr 2020
Please let me know if you have any other questions 
Yannis
