MF

Hi, I have been reading posts for some time now after attending dermatology and spotting a potential diagnosis on a photography request and looking it up on Google. I developed a rash 2 years ago that started on my abdomen and has since spread to various areas. At 1st ringworm was suspected but it did not respond to medication and cream treatment. I also received treatment for potential infections namely antibiotics creams and tables as well as steroid creams but nothing worked. Blood test only showed slighlty raised liver function. Eventually I was referred but due to the pandemic this took about 12 months. In this time my rash has spread and some looks like discoloured oval patches, others like psoriasis and the odd 1 like a small burn/blister. Some come and go and others stay or scar. I can tell when I am going to get a new 'outbreak' because my skin burns and feels like it is being hit with elastic bands. It is itchy and irritable and I find it hard to relax. Once the new marks have appeared this settles but my skin becomes a dry itch however less painful. I notice night sweat can be a problem and I have had this for some time too. The dermatologist said a lot of what it wasn't but not what it might be and sent me for a biopsy , bloods and clinical photography and by chance I saw the potential diagnosis on the paperwork. I saw a different dermatologist today who looked at all skin and the photo diary I have kept.  I was told all the things the biopsy ruled out and that my results could not offer a definitive diagnosis of MF - the recommendation was more biopsies which I have been referred for. Today, at least I was told MF was suspected and when i asked what else was possible I got no response which left me feeling at a loss. Is this normal ?? 

Thanks 

  • Hello Neochez

    I'm sorry to hear about the ongoing health concerns that you're dealing with. It's understandable that you may be feeling frustrated and anxious about things. 

    Mycosis fungoides is a very slow-growing (low grade) type of CTCL and it can be very difficult to diagnose, especially in the early stages. The symptoms and skin biopsy findings of MF are similar to other benign skin conditions. Hopefully, these further biopsies that have been requested will bring some answers and more certainty about things. 

    There is some information on the Lymphoma Action website here that might be of help but  I'd also suggest giving our team of nurses a call. I'm sure they will be happy to try and answer any questions that you may have and offer some advice and support ahead of your next appointment. If you'd like to speak to them they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

    We do have some posts on the forum about MF and you can find these by typing "mycosis fungoides" into the search bar towards the top of the page. 

    I hope this helps and that you have some answers soon. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

    I'm sorry that I can't be of more help