Merkel cell carcinoma

Hi all

my dad has been recently diagnosed but worryingly no one seems to know much about it and apparently he’s supposed to get a sentinel node scan but you have to have a special licence. Anyone with any experience of which hospitals can treat very specifically Merkel cell would be appreciated.

  • My husband has recently been diagnosed with Merkel cell and is being treated at the Chrstie hospital in Manchester He is having a CT scan followed by sentinel node both to check if the cancer has spread He will then have the tumor removed with a wide excision area Sentinel biopsy seems to be par of the course in melanoma type skin cancer There is information if you join the Macmillan skin cancer forum 

  • ps our consultant did say its rare so there is not a lot of data and to stay away.from Google who say it is very aggressive which is not always the case He has a patient who he has been monitoring for 10 years x

  • Offline in reply to Wilbert

    Thank you for your reply - yes Google is very scary! Will look at macmillan!

  • I'm sorry to hear about your dad's diagnosis. Merkel Cell Carcinoma is a type of melanoma that isn't common but is aggressive. It's diagnosed & treated in the same way as all types of melanoma - after the initial excision a wider local excision (WLE) will be carried out & depending on the depth of the melanoma a sentinel lymph node biopsy (SLNB) will be carried out at the same time. This is to see if there is any spread to the nearest lymph nodes & it's carried out by a radiologist alongside the plastic surgeon. If your dad's care is currently under a small local hospital he will be sent to a larger hospital that has the facilities to do these procedures (for example, a patient under York hospital would be sent to Leeds). There are several large hospitals around the country who undertake these procedures - what area of the UK does your dad live in?

    Meanwhile, this information from MelanomaUK may be helpful https://www.melanomauk.org.uk/merkel-cell-carcinoma

    I will send you a friend request - if you accept it I can then send you more information by private message. Good luck to your dad & please let us know how he gets on,

    Angie (Stage 3 melanoma patient since 2009)

  • Hi I've accepted your friend request I'm the one who's husband has Merkel cell we are fortunate to  live near Christies in Manchester one of the specialist cancer entries in the UK The surgeon we are seeing is very interested in Merkel cell and has made it his speciality He says he isn't convinced that all are aggressive and he has been  monitoring a patient  for 10 years to help with improving knowledge and data It's reassuring

    to read you have been a patient since 2009 My husband is 81 He has had bladder cancer which was successfully treated with BCG  Currently he has a patch of cancer in his ureter which is not curable but is treated every 6 months with laser Both cancers are primary Otherwise he is fit and well one consultant says seeing him on paper and in the flesh at totally at odds We keep fit going to the gym and weather permitting he is out on his bike I'm the sun worshipping one my husband is always in the shade which surprised us when he had the skin cancer diagnosis 

    As soon as we have any news I will let you know 

    Best wishes x

  • Offline in reply to Jw82

    It's hard but try I've accepted 

    AgiecT friend request I think it will be good for you to do so too  We can share experiences and support each other xx

  • Offline in reply to Jw82

    I've accepted AngieT friend request I'm not sure if it was for me or you But if you friend her we can share experiences She obviously has first hand experience which will benefit vus xx

  • Hi Wilbert, I've just sent you a private message x

  • So an update. They did the narrow incision and then obviously realised it should have been a wide one so ended going back months later and having that done. The SLNB was also done and apparently clear but he now needs radiotherapy for six weeks. We have no idea how this is going to make him feel and so still a scary time. 
    just wanted to say thank you for all your responses before, made us feel a bit better informed!