CTCL-MF

Hi. I’ve recently been diagnosed with mycosis fungoids after years of being told I just have eczema. I don’t have much information on treatment or what stage it is so far as it was only confirmed in the last few days. I had an ultrasound which showed some reactive lymph nodes.

I’m quite young compared to most people who are diagnosed (from what I’ve read) and I’m wondering if anyone knows if this affects the outcome? As in will I still ‘live to a normal life expectancy’ having being diagnosed age 33 as opposed to being diagnosed age 60+? Hope that makes sense, think I’m just having a bit of a panic! 

  • Hi  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. 

    I was diagnosed way back in 1999 with Mycosis Fungoides (CTCL) so understand the challenges of this journey very very well. But apart from skin treatments I worked and lived a normal life in a demanding education job for 12 years before I took early retirement.

    It took a good year and half to eventually get my diagnosis as like yourself it was looked at as Psoriasis. I was 43 when diagnosed but I know many more the same age as yourself so you are not unusual.

    This is an incredible, life long condition and you need to expect a normal life span although that does not take into account any other health conditions that may come along. Murray Walker of F1 fame lived until he was 97 with only a small amount of treatment required.

    It took 14 years before I reached Stage 4a when I had to have some full on treatment but thankfully it’s unusual for this to happen. You can hit my community name to see my profile.

    Always around to chat and support as best as I can.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

    Click to see how to add details to your profile