Eccrine porocarcinoma

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Hi, I have been diagnosed with Eccrine porocarcinoma cancer April 2024 which I have been told is a very rare cancer. I'm looking for any information on this cancer as it's a rare cancer I'm finding it really hard to find anything. I have found one Facebook group which only has 12 members and are mostly American, and they don't have much information either. Thanks Sam 

  • Hi Wildcat sam,

    Thanks for getting in touch and welcome to our online community.

    My name is Carole and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

    I appreciate how difficult it can be to find information about rare cancers.

    An online article I found, explained that eccrine porocarcinoma accounts for about 0.005-0.01% of all cutaneous malignancies, so it really is rare.

    You’ll perhaps have seen this leaflet from the British Association of Dermatologists which explains what it is, how it is diagnosed and how it might be treated.

    There’s sometimes limited information available about rare cancers, with most data coming from case studies, rather than large trials. It might be worth asking your hospital team to recommend information about eccrine porocarcinoma. They have access to your medical notes, so are best placed to say what information is most suited to your specific situation.

    I’m not sure if you’ve had treatment, but it may help to know that treatment is usually recommended by a group of healthcare professionals. This group, known as an MDT or specialised MDT will explain why they have recommended the treatment they have.

    Unfortunately, I have been unable to find a support group, specifically for people diagnosed with eccrine porocarcinoma. However, our online skin cancer forum is for people affected by any type of skin cancer. It might be helpful to join this.

    If you have further questions, please don’t hesitate to get back in touch.

    Sending best wishes,

    Carole

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.  

    Our ref: HC