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As well as sharing experiences with our friendly online community, registered members are able to contact our experienced online team. The Centre is staffed during office hours and the online team aim to reply within 24 hours.

Psychologists and experts from other Maggie's Centres and partner organisations also facilitate some group and individual sessions.

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Newly diagnosed

Are you newly diagnosed with cancer? Read our series of blogs with information about cancer and its treatment, how to take control of its side effects and tips to help you to focus on wellbeing.

  • 83 conversations

Dermatofirbrosarcoma protuberans

Started by Anonymous on 05 March 2017 at 17:38

Any one else been diagnosed with dermatofibrosarcoma protuberans, I'm a 31year old woman and just recently been diagnosed and will need surgery to remove the growth and a wide margin of healthy skin, tissue and muscle on my lower stomach. I'm struggling with trust in any health professional at present as it took me 5years of going back and for to my GPs and a pregnancy before I finally got referred. It's left me in a state of despair for my ability to accept what any one is telling me regarding my care.

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  • Picture of SusieQ
    From SusieQ  
    06 March 2017 at 10:39
    Edited on: 06 March 2017 at 10:40

    Hello,

    The most difficult part of having a rarer cancer diagnosis, can be that feelling of isolation. It sounds like this has taken a huge length of time to be diagnosed, and very frustrating when you've been going to the GPs for 5 years with the problem.

    Dermatofibrosarcoma protuberans (DFPS) (British Association of Dermatologists) emphasise how rare it is, and that it can be difficult to diagnose. That can feel no consolation when you know something is wrong.

    Regaining your trust in the medical profession may take some time. If you have a skin oncology nurse specialist, do let her know of these issues, as she or he would hope to help trust be re-built.

    In the meantime, I hope someone gets in touch with the same condition. There is a 'DFSP' Friends forum/thread on American Cancer Society webpages, and a dfsp facebook group. (You may have already found these).

    I'm not sure if you live near one of our Maggie's Centres, but you'd be welcome to drop in. There you can talk about those feelings of mistrust you're understandably having, and perhaps talk through some strategies to get round this, and get you through the treatment.

    I'll message you to introduce myself too...

    Warm wishes

    Sue

     


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