Hi ya , and welcome to our little club /chat room ...

I'm so sorry, I've not heard of that cancer either, but I will do some homework and look it up ...

But I do know about lymph nodes taken .. l only had one removed but it was very tender, for a very long time ... even now 2 years on, I still can't carry shopping .. do any painting (wall) etc ...

As far as I can make out, lots are effected in some way with nodes ... so not sure if we have to live with what we've got ... and try to adjust .. while hoping it goes back well ... but you could have a word with your oncology team, and ask them, as you've lost so many ..

But hopefully someone will pop on that knows more then me about it ..

Chrissie x

Hi ya , and welcome to our little club /chat room ...

I'm so sorry, I've not heard of that cancer either, but I will do some homework and look it up ...

But I do know about lymph nodes taken .. l only had one removed but it was very tender, for a very long time ... even now 2 years on, I still can't carry shopping .. do any painting (wall) etc ...

As far as I can make out, lots are effected in some way with nodes ... so not sure if we have to live with what we've got ... and try to adjust .. while hoping it goes back well ... but you could have a word with your oncology team, and ask them, as you've lost so many ..

But hopefully someone will pop on that knows more then me about it ..

Chrissie x

Thanks for the reply Chrissie, I haven't seen the oncology team yet I have an appointment on 3rd September, I am still seeing the nurses with my drain at the moment and we have told the surgeon with or without my drain in we will be going aways for a few days. Just to clear our heads before the next stage of treatment as from diagnosis to surgery was only 3 weeks and I had to close my Hairdressing business down in that time to as us Hairdressers need our arms here's hoping I have some more movement in the top of my arm and shoulder as nerves and muscle were also taken and I have a large dint in my armpit. Thanks again

Regards Heather x

Hi All

i also have been diagnosed with Eccrine porocarsinoma and in June 2019 had a large tumour removed from my right thigh along with my lymph node cluster in my groin nearby.i suffered alot with lymphatic fluid build up in my groin which eventaully burst through my groin wound and i got re admitted to hospital in london for more surgeries and skin grafts and also a muscle switch to protect my main artery in my groin. my main concern now is that i was initially diagnosed with a squamous cell skin cancer but after biopsy of my tumour turns out its an ultra rare eccrine sweat gland cancer which i have been living with for years and misdiagnosed and ignored by my doctors. iam now being told i will need to go through radiotheraphy treatment to kill off any microscopic cells still present. I have also been informed by my surgeon that this will almost definately cause me to get lymphodema in my right leg which iam informed is a lifelong affliction.iam 48 iam active and fit and have an active job, iam wondering if anyone has any other ideas of treatments available other than the standard NHS guideline of radiotherapy. Macmillan have been more than helpful in their reports for this cancer they have sent me.

anyone out there can help or suggest alternative treatments or know anymore about this rare cancer would be a great help

jay