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Eyelid Melanoma

I was diagnosed with amelanotic melanoma of the lower eyelid in January. My EX-dermatologist misdiagnosed me for 13 months. I saw him 7 times about it. Never once did he take pictures, measure, take a patch test…nothing. While I realize it’s rare, I did develop an small ulceration and my lashes were falling out on that lower lid only. It kept growing and I finally insisted on a biopsy not even thinking it was melanoma since it was white. Because of the delay I had 100% of my eyelid removed and 6 surgeries to get the melanoma and build back my eyelid.
Has anyone else experienced a doctor’s delay OR have experienced eyelid melanoma?? I would love to learn about your experience.

  1. Hi - it sounds like you've had a long journey to getting correctly diagnosed. It's frustrating when our doctors don't listen to our concerns or may overlook certain areas. We posted your question on our Facebook page to see if any of our members have experienced skin cancer on the eyelid. Two community members shared, although they were diagnosed with BCC, not melanoma. Here is the Facebook thread: Please let me know if there's ever any other information you need. Sending well wishes your way! -Sidney, moderator

    1. It’s rare to get it on the eyelid and tarsal conjunctiva and amelanotic is rare too. I’m not excusing my EX dermatologist because he said he had seen it before and especially having an ulceration with eyelashes falling out, he should have paid attention. I will look on FB, but even when I have posted on other melanoma sites, I’ve never had a reply for melanoma on the eyelid. Thanks so much for doing that; I appreciate it so much!

      1. As I just posted elsewhere, it took four doctors - all demos - before my first one was diagnosed, and this is with me asking them to check it out. Two just gave it a cursory look and said, "Nah, it's nothing". The last doctor took one look and had me back for an excision - not just a biopsy - the next day. Then he excised more after the biopsy came back with traces at the borders.
        I really don't understand the lack of competence in this regard, but I know one thing: The doctor might know the technicals, but you know your skin better than anyone else. Insist on tests, biopsies, etc if you're concerned. And don't just accept the opinion of the first doctor you see; if you doubt their ability, or just have doubts generally, go see someone else.

        1. I totally agree with you. When something isn't sitting right, always follow up and insist on a biopsy. Our gut feelings can speak volumes when it comes to these suspicious spots.

          I hope you are doing well now and staying safe!
          April,, Moderator

        2. For sure!!

      2. No, sorry; melanoma, yes, but on my back. Plus two early-stage pre-melanomas. (I tell my toddler to stay out of the (super-intense Mexican) sun so "the Sun Monster doesn't get you like it did Dada".)
        On the eyelid sounds awful. Some people get them internally and never know until it's (usually) too late. So at least you're not in that boat. Small mercies, 'eh?

        1. well it did grow on the inside of the eyelid and apparently the type I had was not caused by the sun. I just had another 6 month checkup and a suspicious spot was now found on the inside of the upper eyelid. I just finally found a surgeon to correct what the other surgeon wouldn’t and now I hear suspicious spot. I’m tired… 20 months at MDA alone.

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