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I have ocular melanoma that started as amelatonic melanoma on my eyelid. I saw my dermatologist 7 times in 13 months who kept misdiagnosing me. Because of the late diagnosis the melanoma grew into my palpable conjunctiva. I’m upset about so many things from my dermatologist who was wrong, the pathology lab who stated it was in situ which was wrong, and finally my surgeon at MDA who just refused to do the needed corrections to my eyelid where my palpable conjunctiva is showing. It seems as if no one is on my side or cares about me. Not only do I worry about metastasis, I was told it has a high rate of coming back. I’m also very self conscious of how I look and rarely go out anymore. I really feel I’m suffering from PTSD after the horrible treatment from my surgeon at MDA.
I don’t know what to do, who to turn to and should I report my dermatologist to the Texas Medical Board.
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I am in remission from stage 3 melanoma, source unknown, that was found in my lymph nodes. Originally I was diagnosed as having a cyst on my neck and then an enlarged lymph node. Several surgeries and a year of immunotherapy I am in remission. I cannot give you comfort in that medicine is perfect as it is often wrong. I have had several ultrasounds that have been read wrong or then transposed to give a dramatically larger size of node than exists... It does cause concern and worry, however the worry is a waste of time in the end. You need to be your own advocate, get a second opinion. "Ask"/tell your doctor and surgeon you would like their support in getting an opinion from another provider thus getting it covered by your insurance.
The number of treatments and their success are better every day for melanoma. You are early in finding this even though it has been on your eyelid for sometime. My melanoma (they thought cyst) was on my neck for over 9 months before being partially removed and almost a year before being completely removed from its metastatic location. Be kind to the providers and see if you can push them to get the solution you want or determine why they believe it isn't the best solution for you.
It isn't easy being positive, but it sure helps your daily life when you are not moping around or worried about that what you are unfortunately not able to control. Work on your providers to get treatment with a positive attitude and hopefully this will be removed soon. You can beat this! Prayers to you.