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Recently diagnosed Ocular Melanoma [ Oops- reposted from Cutaneous Mel. forum]

Forums Ocular Melanoma Community Recently diagnosed Ocular Melanoma [ Oops- reposted from Cutaneous Mel. forum]

  • Post
    Thankful_Heart
    Participant

    have seen retinal vitreous Dr in home Pittsburgh   /  all they are offering is 'plaque' temporarily attached to my eyeball —  Radioactive 'seeds' =  Brachytherapy? OR certain Death  — { all I wanted was a New pair of eyeglasses :(  } –

    At Least they Found this in time' –  thoughts anyone?  

    PS internet research demonstrates NEWER  trends in Systemic Immunotherapies –  appreciate any info . . .  other than Radiation in my 'Mostly Good' eye! 

     

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      joelcairo
      Participant

      This is the standard treatment for uveal melanoma. The procedure is about 95% successful (no recurrence of the cancer in the eye). The main alternatives are surgery (where possible, usually not) and removal of the eye if plaque therapy is not possible.

      The systemic therapies and/or immunotherapies are for metastatic melanoma. You will need to be scanned for spread of the disease, because the primary cancer is not going to be fatal but there is unfortunately a fair chance it can spread, which is very serious. A genetic test can tell you whether your risk of metastasis high or low, and I recommend you have it done. It's scary receiving the results of the test, but it's important for you abd your doctors to have a clear view of your situation.

      There are a few online forums that are busier than this one. There is the OCU-MEL mailing list, there is an ocular melanoma Facebook group, and there is an Ocular Melanoma Foundation online forum. You can probably find them all pretty easily in Google. Once you find these, I would suggest doing some reading because there is a lot to know and I don't have the ability to say it all here.

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      joelcairo
      Participant

      This is the standard treatment for uveal melanoma. The procedure is about 95% successful (no recurrence of the cancer in the eye). The main alternatives are surgery (where possible, usually not) and removal of the eye if plaque therapy is not possible.

      The systemic therapies and/or immunotherapies are for metastatic melanoma. You will need to be scanned for spread of the disease, because the primary cancer is not going to be fatal but there is unfortunately a fair chance it can spread, which is very serious. A genetic test can tell you whether your risk of metastasis high or low, and I recommend you have it done. It's scary receiving the results of the test, but it's important for you abd your doctors to have a clear view of your situation.

      There are a few online forums that are busier than this one. There is the OCU-MEL mailing list, there is an ocular melanoma Facebook group, and there is an Ocular Melanoma Foundation online forum. You can probably find them all pretty easily in Google. Once you find these, I would suggest doing some reading because there is a lot to know and I don't have the ability to say it all here.

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      joelcairo
      Participant

      This is the standard treatment for uveal melanoma. The procedure is about 95% successful (no recurrence of the cancer in the eye). The main alternatives are surgery (where possible, usually not) and removal of the eye if plaque therapy is not possible.

      The systemic therapies and/or immunotherapies are for metastatic melanoma. You will need to be scanned for spread of the disease, because the primary cancer is not going to be fatal but there is unfortunately a fair chance it can spread, which is very serious. A genetic test can tell you whether your risk of metastasis high or low, and I recommend you have it done. It's scary receiving the results of the test, but it's important for you abd your doctors to have a clear view of your situation.

      There are a few online forums that are busier than this one. There is the OCU-MEL mailing list, there is an ocular melanoma Facebook group, and there is an Ocular Melanoma Foundation online forum. You can probably find them all pretty easily in Google. Once you find these, I would suggest doing some reading because there is a lot to know and I don't have the ability to say it all here.

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