Anyone heard of Eccrine Porocarcinoma ?

Hi  and a warm welcome to the online community

I have found this information from the British Association of Dermatologists about Eccrine Porocarcinoma. You are right as it says it's a rare form of skin cancer involving the sweat glands.

I've had a search in this group but haven't found anyone else who has mentioned it so you may be unique. I see from your profile that it has recently recurred and spread to your lymph nodes. I hope you're recovering well and let us know how you get on with the radiotherapy.

If you want to ask any questions about radiotherapy you can post in ask about radiotherapy and radiographer Kate will try to respond within 2 working days.

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Hi Latchbrook thank you so much for your reply yes that is all the information i have ever been told about it , yes i have just had a total auxiliary clearance  and they have damaged nerves and muscles 4 weeks ago and kind of struggling with the sensations i'm getting in my arm, shoulder , side and breast ( i still have a drain in place ) and was wondering if anyone else has had this done that has not had breast cancer or will it all be the same . 

Hi 

You probably won't find many people in this group who have had a full lymph node clearance but quite a few people in the melanoma group have.

It might be worth your while joining that group so that you can ask about the sensations you're getting. I had a sentinel lymph node removed when I was diagnosed with melanoma and did have odd sensations in my arm for quite some time later. It felt numb but if I touched it then it felt like I had pins and needles there. Probably over the period of about a year those sensations gradually went away.

Clicking on the link will take you to the melanoma group if you'd like to join.

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Thank you Latchbrook i will go and join that group and see if i can find some answers ,i don't know about the radiotheraphy treatment as of yet as my appointment is not till 3rd Sept with the Oncologist , after the last couple of months my Surgeon has allowed my Husband and i to go away for a few days to repair our minds i suppose , thank you again for your replies x

I also meant to ask  if you'd spoken to the welfare rights advisers on the Macmillan Support Line? I know you say you're above the threshold for benefits but it might be worth your while getting them to double check that for you. It's free to call them on 0808 808 0000 and they're available from 8am to 8pm Monday to Friday.

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Hi latchbrook yes i have spoken to them , it was them that told me i was only entitled to ESA because of my NI contributions and put me on to the DWP i had an interview 2 weeks ago with the local job center, i'm assuming the claim is ongoing .

Hi, I'm leaving this message incase you pop back onto the group  I also have Eccrine porocarcinom and there's no any updates on the condition yet. There's a group on FB with only about 22member for other countries and they don't know much about this cancer. Take care sam