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mycosis fungoides getting difficult

ctcl
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hI, i'm 67 male, live in Wales uk.

Things have worked well in controlling the mf using uvb exposure over the years. Suddenly i got a massive bump on my arm, it started four weeks ago and is several inches across in the skin. of course the medics are switched on suddenly, i'll see an oncologist tomorrow.

But the worst thig is, the imminence of having the bump -it is a tumour.. is making me feel ill just having to live with it. I've known only for a week, what it is. does everyone go through this process of adjusting to new situations, ? Having had mf for years, i thought i'd be prepared for lumps and bumps, but it don't work like that apparently?

Does anyone have any suggestions on how to get my attention off my arm, how not to worry myself ? i do know there are zap style treatments, but the whole thing is disturbing me, specially as its been over christmas..

 

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    Hello ctcl,

    Welcome to Cancer Chat. I hope your appointment with the oncologist went well. Let us know - when you get a chance - what the oncologist said.

    I hope you will get to talk to others on this forum who have had a similar experience and that they will be along soon to share it with you. I do remember reading some threads on the forum last year by other members who have been affected by mycosis fungoides. You might be interested in taking a look at this thread here or read [@Mori]‍'s story here. Feel free to respond if you wish. 

    Hopefully you will hear from others here who can offer you support and advice on how to deal with this new situation. If you ever wanted to talk things through with our lovely nurses, you can also ring them on this free number 0808 800 4040, Monday to Friday from 9am to 5pm (their helpline will be closed on Monday 2nd of January).

    Best wishes,

    Lucie, Cancer Chat Moderator

     

     

  • Offline in reply to Moderator Lucie
    HI Lucy I will look at the other posts.. thanks for the reply. Ive been booked in for radiotherapy this coming tuesday for 2 weeks, the only strategy ive invented for now is, to be 'intentionally' aware that the 'rest of me' is hopefully working relatively properly, its just fast growing skin bumps [wont use the t word!]- and i'll have a ct scan as well next week. so a lot of the waiting is nearly over. mycosis Fungoides is a weird disease, and so few of us get it, about 1 in 30,000 or less..
  • Offline in reply to ctcl

    Hi ctcl

    I just wondered how you were getting on?  My 74 year Mum has MF and very poorly at the moment.

    Tessa

     

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