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Today found out mother diagnosed with choroidal melanoma

Forums Ocular Melanoma Community Today found out mother diagnosed with choroidal melanoma

  • Post
    Eliz_Guti
    Participant

    My mother is currently going through one of the toughest situations of her life. As her daughter, I truly don't know how to vent or show how scared I am about her diagnosis today. Today after 4 weeks of visiting specialists and getting referred from hospital to hospital, it has come to the conclusion she has Choroidal Melanoma. It all started about a month ago when she started to complain of flashes of light, black spots and floating objects from her right eye. She said she had immense pressure on her right side of her head and her headaches and migraines were getting worse. Ever since I was a child, my mom has suffered from migraines, but doctors never said anything about them. When she went into her primary 4 weeks ago about her vision and headaches, her primary measured her intraocular pressure and said it was high. He referred her to a basic ophthalmologist , (which took her insurance 2 weeks to approve) and he was the one who determined there was retinal detachment and a "mass" pushing on the retina. Once again she was referred, to another specialist, now this doctor I completely have the highest respect for, he was thorough, he has been wonderful and supportive, he was the one who did the B-scan, ultrasound, determining the tumor was inside the eye, thus ocular tumor, when I saw the ultrasound, my heart started to race, the tumor not only takes over half of her eye, but about 3/4 of her eye. As I write this I find myself tearing up, I am truly scared, I just found out about this today. I dont live with my mom, and my moms English is very limited, I feel like she is just so unaware of what is truly going on, and I dont want to show how much anxiety and how scared I truly I am for her. This doctor does not specialize in intraocular tumors, so we have now been referred to another specialist, but now we must wait until insurance approves, and it is a waiting game. They still need to do an MRI and blood work they said to see if she doesnt have tumors in other places or if it has spread. I am really scared, my mom is my best friend and this is just not easy for me to take in.

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      Beccy2907
      Participant

      Dear Elisabeth

      I just got a google alert that lead me to your post. The reason why I once set up google alerts set up on keywords like "ocular melanoma", "eye cancer" and a few more is because I was diagnosed with uveal melanoma in December 2012 myself.

      I can only imagine what it feels like for someone when a beloved one faces a cancer diagnosis – in this case one that is fairly rare and not well known in society.

      There are a few things that I want to share with you based on my very own experiences:

      First of all, I would try to have your mother seeing Shields and Shields at Will's Eye Hospital in Philadelphia. They are THE experts in the field when it comes to treatment options of the primary tumor. Depending on the size (height, basal diameter, location) there are various types of treatment. Usually, one distinguishes between small, medium and large melanomas. Mine was medium and I underwent a plaque therapy. If this is a relevant option for you Mum, she does not have to be scared. It does not hurt and works in more than 90%. I also had to do MRIs, chest x-rays, blodd test etc. where they were looking if the cancer has spread or not. I still do MRIs of my abdomen every six months. Why I do this is because I had a biopsy done to check if there was any chromosomal changes to the tumor'a tissue. If you google around you will find expressions like monosomy 3 etc. with horrifying medical papers (they freaked me out! So do not google too much). I did have monosomy 3 with a metastatic risk of 30%. The liver is the organ that shows the highest likelihood for post-mets. That is why MRIs are important.

      Overall, I can totally understand that this is tragic and fear is all you carry inside of you. I still do, too more than one year after treatment. However, and I know that this is tough, supporting her menthally is the best you can do! I warmheartedly offer you to talk to me on Skype if you want to. You find me under Beccy2907. I live in Europe again, where I originally come from. And would be happy to talk to you if you want to. Just send me a message any time!

      I am not a native and googled the hell out of this topic to be able to understand what the doctors were telling me. By now I know a loy about this disease. And a lot more about myself, too. So if you want to talk to a former patient, just let me know!

      Sending you a lot of positive thoughts across the ocean!

      All the best and a lot of strength for you and your Mum,

      Rebecca

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      Beccy2907
      Participant

      Dear Elisabeth

      I just got a google alert that lead me to your post. The reason why I once set up google alerts set up on keywords like "ocular melanoma", "eye cancer" and a few more is because I was diagnosed with uveal melanoma in December 2012 myself.

      I can only imagine what it feels like for someone when a beloved one faces a cancer diagnosis – in this case one that is fairly rare and not well known in society.

      There are a few things that I want to share with you based on my very own experiences:

      First of all, I would try to have your mother seeing Shields and Shields at Will's Eye Hospital in Philadelphia. They are THE experts in the field when it comes to treatment options of the primary tumor. Depending on the size (height, basal diameter, location) there are various types of treatment. Usually, one distinguishes between small, medium and large melanomas. Mine was medium and I underwent a plaque therapy. If this is a relevant option for you Mum, she does not have to be scared. It does not hurt and works in more than 90%. I also had to do MRIs, chest x-rays, blodd test etc. where they were looking if the cancer has spread or not. I still do MRIs of my abdomen every six months. Why I do this is because I had a biopsy done to check if there was any chromosomal changes to the tumor'a tissue. If you google around you will find expressions like monosomy 3 etc. with horrifying medical papers (they freaked me out! So do not google too much). I did have monosomy 3 with a metastatic risk of 30%. The liver is the organ that shows the highest likelihood for post-mets. That is why MRIs are important.

      Overall, I can totally understand that this is tragic and fear is all you carry inside of you. I still do, too more than one year after treatment. However, and I know that this is tough, supporting her menthally is the best you can do! I warmheartedly offer you to talk to me on Skype if you want to. You find me under Beccy2907. I live in Europe again, where I originally come from. And would be happy to talk to you if you want to. Just send me a message any time!

      I am not a native and googled the hell out of this topic to be able to understand what the doctors were telling me. By now I know a loy about this disease. And a lot more about myself, too. So if you want to talk to a former patient, just let me know!

      Sending you a lot of positive thoughts across the ocean!

      All the best and a lot of strength for you and your Mum,

      Rebecca

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      Beccy2907
      Participant

      Dear Elisabeth

      I just got a google alert that lead me to your post. The reason why I once set up google alerts set up on keywords like "ocular melanoma", "eye cancer" and a few more is because I was diagnosed with uveal melanoma in December 2012 myself.

      I can only imagine what it feels like for someone when a beloved one faces a cancer diagnosis – in this case one that is fairly rare and not well known in society.

      There are a few things that I want to share with you based on my very own experiences:

      First of all, I would try to have your mother seeing Shields and Shields at Will's Eye Hospital in Philadelphia. They are THE experts in the field when it comes to treatment options of the primary tumor. Depending on the size (height, basal diameter, location) there are various types of treatment. Usually, one distinguishes between small, medium and large melanomas. Mine was medium and I underwent a plaque therapy. If this is a relevant option for you Mum, she does not have to be scared. It does not hurt and works in more than 90%. I also had to do MRIs, chest x-rays, blodd test etc. where they were looking if the cancer has spread or not. I still do MRIs of my abdomen every six months. Why I do this is because I had a biopsy done to check if there was any chromosomal changes to the tumor'a tissue. If you google around you will find expressions like monosomy 3 etc. with horrifying medical papers (they freaked me out! So do not google too much). I did have monosomy 3 with a metastatic risk of 30%. The liver is the organ that shows the highest likelihood for post-mets. That is why MRIs are important.

      Overall, I can totally understand that this is tragic and fear is all you carry inside of you. I still do, too more than one year after treatment. However, and I know that this is tough, supporting her menthally is the best you can do! I warmheartedly offer you to talk to me on Skype if you want to. You find me under Beccy2907. I live in Europe again, where I originally come from. And would be happy to talk to you if you want to. Just send me a message any time!

      I am not a native and googled the hell out of this topic to be able to understand what the doctors were telling me. By now I know a loy about this disease. And a lot more about myself, too. So if you want to talk to a former patient, just let me know!

      Sending you a lot of positive thoughts across the ocean!

      All the best and a lot of strength for you and your Mum,

      Rebecca

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      POW
      Participant

      Hi, Elizabeth-

      I am so sorry that you have had to join us here. However, I think you will find a lot of good information, understanding and support from the folks here.

      Actually, the MRF revamped their web site last summer specifically because they wanted to launch their new Ocular Melanoma initiative. They added a lot of information about OM specialists and treatment options here http://www.melanoma.org/understand-melanoma/what-is-melanoma/ocular-melanoma There is also a forum specifically for OM discussion, although it seems that most OM patients still come here to MPIP. 

      It seems that most of the treatments that work for cutaneous melanoma also work for ocular melanoma. There will be a lot to learn and some very important decisions for you and your mother to make, but there are also a lot of reasons to be optimistic about her recovery. She is lucky to have you to help her through this. 

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      POW
      Participant

      Hi, Elizabeth-

      I am so sorry that you have had to join us here. However, I think you will find a lot of good information, understanding and support from the folks here.

      Actually, the MRF revamped their web site last summer specifically because they wanted to launch their new Ocular Melanoma initiative. They added a lot of information about OM specialists and treatment options here http://www.melanoma.org/understand-melanoma/what-is-melanoma/ocular-melanoma There is also a forum specifically for OM discussion, although it seems that most OM patients still come here to MPIP. 

      It seems that most of the treatments that work for cutaneous melanoma also work for ocular melanoma. There will be a lot to learn and some very important decisions for you and your mother to make, but there are also a lot of reasons to be optimistic about her recovery. She is lucky to have you to help her through this. 

      Loading spinner
      POW
      Participant

      Hi, Elizabeth-

      I am so sorry that you have had to join us here. However, I think you will find a lot of good information, understanding and support from the folks here.

      Actually, the MRF revamped their web site last summer specifically because they wanted to launch their new Ocular Melanoma initiative. They added a lot of information about OM specialists and treatment options here http://www.melanoma.org/understand-melanoma/what-is-melanoma/ocular-melanoma There is also a forum specifically for OM discussion, although it seems that most OM patients still come here to MPIP. 

      It seems that most of the treatments that work for cutaneous melanoma also work for ocular melanoma. There will be a lot to learn and some very important decisions for you and your mother to make, but there are also a lot of reasons to be optimistic about her recovery. She is lucky to have you to help her through this. 

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