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Hi All

Haitch1970
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Hi I'm Heather 49 Just had all Lymph nodes removed 4 weeks ago in my right arm pit and a 7cm tumour removed due to Eccrine Porocarcinoma , i had another tumour removed from the same armpit 7 years ago but given no other treatment at the time .. they have damaged nerves and muscle this time and i'm struggling with sensation /no sensation in my arm ,armpit ,side and across my breast , i still have a drain in as well which is really doing my head in now and i have very little movement in my arm , i know things take time but i have been told most of the lack of feeling wont come back at all , and this week i think is my worst week yet with soreness and stiffness i can't sit or lay comfortable at all .. please tell me this is all normal and will get better , it seems no one has ever heard of my cancer surely i can't be that unique somebody must know about it or have it :|

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    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

  • Offline in reply to Chriss

    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

  • Offline in reply to Haitch1970

    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

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    Hi Heather

    i have replied to a post further down on this forum

    its good to know someone eles  with the same rare cancer as me, aslo that we are the same age!

    i have some literature from macmillan about this cancer i have just printed off and i can share with you but its not nice reading to be honest.

    i had my drian removed a couple of weeks ago and have gone through numerous surgeries.

    iam house bound now and yes iam sore too especially as its my groin area and also having a muscle cut away and moved over to my groin area. have you had any advice on lymphodema? i seem to be doing ok with it as i still have one lymph gland deep in my pelvis area which they didnt remove,the doctors said 3 out of my 6 lymph nodes removed were infected. but if i go through with the radiotherpay this will possibly destroy my other lymph node causing me to get lymphodema.

    anyway would be good to chat and share notes 

    wish you all the best in your recovery

    jay

  • Offline in reply to Jayz33333
    Hey Jay I'm so sorry to hear your story but I am also so glad to hear from another who is as rare and unique as me I had 12 nodes out in my armpit and have very little movement in that area, I also have very strange feelings of numbness and I still can't lie or sit for long so sleep is not good. I have little information about the cancer even 7 years on from having it the first time and like yourself i was miss diagnosed for 6 years before that and only when they decided I had a blocked sweat gland and took it out did the pathology come back as this rare cancer that they know little about, our stories are basically the same we could of been twins I also had my drain out 2 weeks OK. I have been given a little detail about lymphedema as I have no nodes at all in that area and yes have also been told radiotherapy can make you more prone and very sore because of the fact the areas where we both are going to be having it have folds In the skin and are not flat but you can use moisturising lotion before hand to help something on the lines of aqueous cream also to use dove or baby shower and bath stuff and not to soak on the bath and to user cooler water rather than hot, also you should be moisturising your leg and groin area constantly everyday, I have found my skin very dry, drink plenty of fluids and to massage the cream upwards rather than downwards, I saw my oncologist yesterday and she will be arranging an initial appointment with the radiotherapy team to get measurements and dosage as normally you have the treatment with raised arms and I can't do that but she did say I'd have it every day for 5 to 6 weeks not looking forward to it, it will be nice in a strange way to have someone to chat to about the journey we are upon please feel free to message me anytime x
  • Offline in reply to Haitch1970

    Hi Heather

    so glad you replied. so i have 3 bits of literature and cases on this cancer if you want me to pass them on i would be happy to just say the word.

    so i had a lump removed back in 2002 from the same area and had no feedback from biopsy results and this grew back slowly, i thought it was a keliod scar which 5 years ago started looking pretty bad with itching and oozing, this was ignored by my doctors until early this year where the ball got rolling with a biopsy and very quick surgery.i have a massive part of my thigh removed luckily just down to the muscle so no muscle was removed on that site.there is an NHS investigation going at the moment to find about the results and neglegence back in 2002

    im also pretty *** off as in the last 5 years and being seen by 3 different doctors no one did anything about it,all it would have taken was a simple biopsy and the possiblity of me not loosing my lymph nodes

    iam looking into different treatments as radiology will be a life changing treatment with lymphodema, infertility and possibly impotence due to the area of treatment, but after reading all the paperwork i have it looks pretty imperative to go down the radiology route.

    please do keep in touch as i agree this is so rare would be good to share notes

    Jay

  • Offline in reply to Jayz33333

    just wondering if your in london? as we may have been in hospital at the same time

    Jay

  • Offline in reply to Jayz33333

    Hello! Just wondering how everyone is getting on? I was just told yesterday I have eccrine carcinoma and I’m pretty freaked out and anxious. 

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