Good morning 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,
Just picked up your post that had gone unanswered for some time. PLCH is not something I have ever heard of so ended up going the classic google search - normally something we might encourage to do only with caution because there is so much misinformation out there.
Turns out it is rare - now that I can relate to as my wife's cancer is rare and of course that does not always help a lot in touch base with someone on here. I can relate a bit myself as I have been hospitalised on a number of occasions with breathing difficulties and my wife has also had issues due to the location of her cancer.
I did find this article from the European respiratory review from 2017 and note it talks of serial lung function testing - that I imagine could be more difficult at the moment because of covid. I see it also notes "The disease may resolve spontaneously or lead to life-threatening situations" - so that is really helpful then.
One of the "plus" sides of having something rare is we often get attention from the best experts in the field - one of the downsides is we can rapidly become one of the best experts in the field.
If you have not heard from the hospital yet it might be time to check with your GP to see if they can give you some idea how long the referral might take.
<<hugs>>
Steve
