Please help a concerned mum

FormerMember
FormerMember
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Hello all ,

 My two year son has had a black mark on his big toe right foot for around 4 months I never gave it any concern, just thought it was a bruised toe when it was taken ages to go away again I just put it down to a bruised toe nail . My son had never indicated to me that he had ever hurt his toe , also at no point is it sore to touch red or inflamed. On Friday I noticed that it had changed shape it was now growing downwords towards the nail bed and actually at one point it's clearly on the nail skin fold  . So because It's clearly got bigger and it on his skin and not the nail I took him to see the nurse . She says it " looks not good " but will get a GP to have a look GP agrees she does say to me she has never had to refer a child this young to a specialist and explain to me he will need a biopsy.

 

so now I am terrified waiting on someone to contact me been told it won't take longer than two weeks but two hours right now is feeling like a life time . I have done some research and it's definitely not a streak more like a very poorly drawn and rough rectangle/circle it only comes past his nail on one point and it's no bigger than 3 mm . It's also a very dark deep black colour no other colours does fad very slightly when you look properly at it around the edges .

just looking for guidance advice tips help knowledge anything . Cheers 

  • FormerMember
    FormerMember

    Hi cc I'm sorry for your distress I can imagine you're beside yourself, I don't know anything about paediatric mm only that it's very rare. You may like to email wilma the skin nurse or visit the link here for help,and advise. Let me know how you get on.

    www.macmillan.org.uk/.../macmillan-support-line-mobile.html

  • Hi Cc1983, Katsil has hit the nail on the head when she says melanoma in children is rare, so here’s hoping that when the biopsy comes back it will be found to be something less sinister. I’m hoping your two year old feels currently well and is young enough not to feel bothered by the visits to the Drs. I hope you are able to cope with the uncertainty over the next few weeks.

    It’s good that your GP has made an urgent referral because soon you will know one way or the other. Some people cope by just hoping they haven’t got a worst case scenario, whilst others research as much as they can so that they can feel in control of the situation. I think it helps to let the Drs that you see know which category you fall into so that they can gauge what info to give you based on that. 

    The members of this group can help tell you there experiences of the procedures they underwent, and there is a lot of information in various parts of the site I wonder if this previous post of mine might help you find your way around the site Melanoma Information and to post in the ask a nurse part if you have anything medical you want to ask. 

    I was curious and also found that the Royal Marsden hospital in London specialise in Paediatric Melanoma. If melanoma is diagnosed there is also a group on here for Parents of children with cancer that group could be a source of help for you if you to cross that diagnosis line, as you might have similar concerns and practical issues no matter what cancer type. You might want to search out grants for hospital travel from Macmillan or Melanoma UK, if you do have extra travel involving specialist hospitals further away than normal.

    In most adult cases of melanoma, by the time a diagnosis occurs from a biopsy the surgery has already been done and no further action is required, which is good news, I am assuming the same applies for children. 

    Wishing you luck in your search for info and keeping positive in the next few weeks. You might find your child breezes through this as he is too young to be worried by any of this, but poor you worrying on his behalf.

     Best wishes

    Take care KT

  • FormerMember
    FormerMember in reply to KTatHome

    Royal marsden is one of the best in the world for mm care they really are first class. I visited for 2 nd opinion with mine!

  • FormerMember
    FormerMember

    Hi CC,    I work with children in the community and often come across various 'marks' that appear after birth.  Sometimes something appearing within first 18 months or so of life can come within birth mark umbrella.  They can come in many guises especially if any mix race heritage, and sometimes hard to define.   I just thought I'd add this dimension to discussion, as I can appreciate it is a very distressful time for you.   With respect I find GP primary care , often get things wrong, as in my case with MM unfortunately for me    so hopefully it is something much less sinister for your child and most importantly not bothering them at the moment.   Fingers crossed it will all turn out ok.     Let us know how you get on.

  • FormerMember
    FormerMember

    Just want to say a huge thank you for my replies. Been told he will be seen in Newcastle RVI so hopefully I will get an appointment soon . Will definitely update you all when I have one . 

    I am definitely the kind of person that will read up on everything so I do feel I bit more at peace knowing it's so rare in kids is ridiculous. Never thought of a birth mark actually never realised you could get them so long after birth . So again that's made me feel better especially with it growing past the nail bed . 


    Thank you all again and good luck to each of you on your own journey x 

  • Hi - I am under the care of RVI Newcastle. From the original referral to the RVI I got my initial appointment at the RVI within 2 weeks. I have to say that the team at the RVI are excellent - you will receive a cancer nurse/point of contact for any queries at all. All very friendly and it appears very efficient too. 

    I was referred there with a MM stage 2b 4.5mm (so rather deep!) on my elbow. I've had a full body CT scan and get my results this Wednesday to see if it has spread, same day as the WLE on my elbow. So obviously very nervous. But I know whatever the results, and what's in store thereafter, I will be in the best place. Best of luck ... and maybe see you there! PS. There's a 11 storey car park at the RVI, often nearly full, so go early to ensure you get a parking spot. 

    Best wishes, Diane

  • FormerMember
    FormerMember in reply to FormerMember

    Hi CC, just wondering how you got on. My three year old is seeing a consultant on Tuesday and I am a wreck. x