Hubby had NHL 2 years ago- on his lip- after lots of discussions with various specialists over a few months radiotherapy was used successfully! Had a few check ups over the first year then discharged!
However he has recently been sent an appointment for a dermatology Mycosis Fungoides Clinic!!?? No idea why?
He was also diagnosed with prostate cancer last year (found on scans for the NHL) treated with radiotherapy and all clear at present!
Anyone know why he has appt?? He saw Gp a few weeks ago with a lesion on his ear but told it was likely seborrheic Keratosis- is this linked to Mycosis Fungoides??
thanks for reading we both a little concerned they know something we dont!
Hi again Pastyum
Is this the first time that Mycosis Fungoides has actually been mentioned?
Mycosis Fungodes is actually of a number of rare types of Cutaneous T-Cell Lymphomas (Skin Lymphoma) (CTCL)
So this may well be his original diagnosis.
I have just read the letter he received and its to meet with 2 specialists- one from London & one from Bristol! Am curious reading up about Mycoses Fungodes- deems it as incurable- we were never told this- we both thought the cancer had gone with radiotherapy! 
Yes Mycosis Fungodes (MF) is on the rare side (8 in a million)….. classed as a slow growing, incurable but a very treatable type of T-Cell Low-grade non-Hodgkin lymphoma
I was diagnosed with my MF way back in 1999 when I was 44…… I continued to work for 12 years in a demanding teaching job on a full timetable fitting in my various types of skin treatments into my none contact time or over the holiday.
Back in 1999 my great dermatologist did not tell me I had MF….. he just called it Para-Psoriasis..... I was happy with this as I knew a few people who had Psoriasis and they just got on with life.
But I eventually found out my real diagnosis a few years later when I was accidentally copied into a letter to my GP....... the next appointment was interesting!!!
But my Dermatologist asked me if I had any real challenges living with my skin condition over these years…. I had to admit that I had no problems…… then he said “….just because you now have heard the word Lymphoma don’t let this change anything…… see it as a chronic health condition”….. I did this and lived as normal a life as any others.
Unfortunately I was diagnosed with a second rare (4 in a million) type of aggressive High-Grade Peripheral T-Cell Non Hodgkin’s Lymphoma taking me to stage 4 in late 2013
If this second NHL had not come along I most likely would not have had any significant treatments…..
But I turned 70 last Nov and I am living a great life.
Most Dermatologists will only see a few cases of MF in their working lives……. GPs will have no idea.
The 2 specialists from London & Bristol will have a better idea.
Sir Murray Walker of Formula I fame lived with MF….. he had a little treatment and lived until he was 97….. D A Baracus who was Mr T in the old television program The A Team has lived with his MF for many years.
As I said my Dermatologist said think of this as a chronic health condition and used Diabetes as an example….. living with Diabetes requires daily monitoring and injections for life…… if things go wrong they can go go seriously wrong……. In MF it’s treated as and when required and will develop slowly and not tend to be aggressive.
