Hello I have just been diagnosed with a very rare cancer called follitropic mycosis fungoides
I can't find much info on it and was told for a year it was just eczema by my Dr so ended up going private for biopsy I can find things about mycosis fungoides but not my substrain follitropic anyone have this thank you xxx
Hi Moon76 and a warm welcome to this little and rather exclusive corner of the Community and sorry to hear about your CTCL diagnosis.
I am Mike and I help out around our various Lymphoma groups.
Let’s start with some context…… I have been on my Lymphoma journey for over 25.5 years first diagnosed way back in 1999 at 44…… with my rare (8 in a million) incurable but treatable Classic Mycosis Fungodes (MF)
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive Peripheral T-Cell Non Hodgkin’s Lymphoma (PTCL-NOS) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
MFs are some of the very rare types of the 60 types and sub-types of Lymphoma….. unusual in that you see your Lymphoma day in day out.
About 5% of all MFs are Folliculyropic MF and on the whole it affects hair follicles in particular and commonly the head and neck.
So it is more rare than my type…… it took a long time before I ever meet anyone with the same MF……. You most likely will be the same.
Classic MF can basically affect all areas of the body and at times my skin was 70% covered in tumours….. To see my full story follow this link See my story
Our daughters were 14 and 18 when I was diagnosed but I continued to work for 12 years in a demanding teaching job fitting in various skin treatments during my none contact class time……. Then everything went to a different level when my second T-Cell appeared.
But we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 70 back in Nov last year and I am coming up to 10 years since my last treatment and I doing great.
MF can be very hard to diagnose, often seen as eczema or Psoriasis. my great Dermatologist was 99% sure I had MF but it took a full year and 6 biopsies to get the pathology to confirm this.
A couple of questions to help us move forward…..
How old are you?
Where-ish do you live?
What hospital are you under?
What treatments have you had?
Always around to chat or to answer your questions.
Mike (Thehighlander)
It always seems impossible until its done - Nelson Mandela
