1. Community
  2. Blood & Immune System
  3. Haematological Disorders

Mycosis Fungoides Diagnosed finally at age of 45!

Posted , 5 users are following.

SL
SL

For a lot of people out there with this disease, I have been told that it is a very slow moving cancer and if diagnosed in the first stage the outcome is very good with normal life expectancy. I first went to our Dr. When I was around 14 and was told that she could not tell me what I had. At this point she tried cortisone cream which didn't work. Various Doctors tried to diagnose it bit failed over the years. Since this is a very hard cancer to diagnose, I am not upset with any of them. I had been seen in Ireland, USA and finally in Canada where the diagnosis was made. After the initial shock, crying and then acceptance stage, I can say that I am extremely optimistic regarding the outcome. For those with a less than positive diagnosis for their outcome, be strong and keep fighting. Try cancer fighting foods, take your vitamins, exercise when possible, reduce the fat content in your diet and talk to your Doctor about what I have suggested so you can do what's right for you. Don't give up and most importantly take time to relax and enjoy the beauty that this world has to offer. Never stop dreaming. :D

1 like, 4 replies

4 Replies

  • stanzie
    stanzie

    Posted

    Hi I was diagnosed with MF a year ago this week .All I had was a little patch on each foot and a couple on each forearm.. The doc said my diagnosis came back first time with MF.The patches are gone now .

    While looking it up you were the first person I came accross who had it . Most of the forums dont seem to survive as there does not seem to be much chat about it .

    Like yourself I said "ok I have this and there is nothing going to change it ...so just get on with it " I didn,t even cry as I felt at this moment in time there was nothing to cry about , I would save the tears for another day.

    A year later there is nothing on my body at all , but I know it could rear it,s ugly head at anytime.

    Sorrry it took so long for you to get a diagnosis . You have one now and at least you have a name for it .

    I dont know if you will read this but if you do we could keep in touch

    Stanzie

    • indio07182
      indio07182 stanzie

      Posted

      Hi,

      You are a lucky person because MF never dissapear withouth treatment.Good for you!!!If the patches were small and flat then the right diagnosis was parapsoriasis in small plague not MF.

  • lisa_jo
    lisa_jo SL

    Posted

    Hello SLsmile

    I just read your post and I was curious how they finally diagnosed you. I have had a chronic rash for over a year and have seen many dermatologists. They have all diagnosed me with eczema. They have prescribed me clobetasol which clears the rash for awhile then it comes back. I could very well just have chronic eczema, which would be greatsmile But the rash is odd and in my gut I feel like it is not just eczema. Over the summer it was so bad I had open wounds and ended up getting a staph infection. I have recently been diagnosed with hypogammaglobulinemia (sp?)/ Common Variable Immune Deficiency, through running tests for Rheumutoid Arthritis. I would have never known this because I don't have the regular symptoms, i.e. chronic infections, etc. I feel like it is all related and the only most recent change in health or me is this rash. It is mostly in patches on my shins, below my knee, on my elbows, and under my arms and on the side of my arms. For my RA I was on Enbrel for 10 years which concerns me because there have been studies where some people on Enbrel get cancer. I am interested to know where your rash was and how you were eventually diagnosed. Any info you could give me would be greatly appreciated! Take good caresmile Lj

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.