Home Forums Melanoma: Newly Diagnosed – Stages I & II Naevoid melanoma diagnosed – roller coaster ride

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  • #21860
    janes
    Participant

    I have been diagnosed with a naevoid melanoma in December. Apparently brewing and misdiagnosed for many years. Had 2 tumours removed from my ear in December, further excision in Jan and just had full ear amputation and waiting for results next week to see if edge markers are clear. I have found the posts helpful but cannot see any with this type of melanoma or posts where 3 excision clearances have been needed. Breslow of tumours were both 4.5 and invasive. Mitotic only slightish raised at 1. I have been positive until this last excision and feel that life has been stopped and in limbo.

    #63774
    Catherine Poole
    Keymaster

    I have not heard of this variation of melanoma, here is a study on it: http://www.ncbi.nlm.nih.gov/pubmed/11002761

    I would advise you be seen at a top melanoma center for better care. Where are you going now?

    #63775
    janes
    Participant

    Thank you for the link. I live in the uk and have a good multi disciplinary cancer team directing my care. I have my first oncology appointment this weeks so hopefully will get some more answers and plan of

    care in addition to surgery.

    #63776
    Worrywart
    Participant

    It is a rare variant. You may have better luck connecting with others with this subtype on http://www.mpip.org.

    #63777
    janes
    Participant

    Thank you,i will try this site. I am currently recovering from ear amputation and wide excision with radiotherapy to follow. Fingers crossed we have gained control when re scanned

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