Malignant melanoma of the choroid in the eye

Posted by twocents @twocents, Nov 1, 2018

My husband was diagnosed with a malignant melanoma in his eye last May. He had a radioactive plate inserted in his eye for four days the beginning of June. The melanoma has a 50% chance of spreading to the lungs, lymph nodes and liver. Has anyone in this group experienced this diagnosis?

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@colleenyoung

Hi @dontteachhate45, I'm tagging fellow members @twocents @sunflower319 @tiredfarmer @me1229, who also have experience with melonoma of the eye that has spread to share their experiences with you.

Don, has the spread to your liver been confirmed? I know you were waiting for the results. What is the plan moving forward?

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It was confirmed last Friday. My doctor said she referred my case to the oncology department.

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@me1229

On March 16, 2023 I was diagnosed with Ciliary body & choroidal melanoma. I also have a "pigment dusting" over the iris. I am being treated at Mayo in Jacksonville. I was given the option to treat the tumor with plaque radiation and just monitor the dusting. Another option was to remove the entire eye. We chose the radiation at this point. That happened 4/21 and removed 4/25. I sometimes wonder if I should have just removed the eye! So far my CT of the abdomen, chest X-ray and bloodwork does not show metastasis in organs BUT, based on notes in this blog, that in some people it took months to show their cancer spreading.

I meet with my oncologist Wednesday. I want to be prepared to ask the right questions. Can anyone contribute and let me know what questions I should be asking.

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My melanoma spread to my liver. Iwas cancer free for 5 years. I am located in MN. I am waiting to find out when my appointment is with an oncologist. What questions did you ask?

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I want to follow Cancer support group to be notified about new activity.

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@dontteachhate45

My melanoma spread to my liver. Iwas cancer free for 5 years. I am located in MN. I am waiting to find out when my appointment is with an oncologist. What questions did you ask?

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I’m only 10 months post radiation and going every 3 months for CT chest, MRI abdomen and blood work. So far, so good.

I wish I knew what questions you should ask other than prognosis. Google search should help you find some info to help you with questions.

My prayers are with you.

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@gigivandame

I want to follow Cancer support group to be notified about new activity.

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Welcome to Connect, @gigivandame. You mentioned that you’d like to follow the Cancer Support group. Simply by typing your first post, you should automatically be included in the group. However, there are a couple of ways to make sure.

Usually the first page you see when clinking into Connect is the page of Support Groups. Scroll down until you see Cancer Support. There’s a little oval outlined in blue which says Follow. Click that and you’re good to go. You’ll see new posts in that group.
However, Cancer support is pretty general. It will contain a host of many different types of cancer that may not be of interest to you personally.
If you’d like to narrow down the discussions you can search for the specific area which pertains to your concerns. Then, once you reply in that conversation you’ll notice a dark bell under the opening discussion. Clicking the bell shows you options to personalize how the notifications will come to you.

Are you being treated for or have a cancerous condition?

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@dontteachhate45

My melanoma spread to my liver. Iwas cancer free for 5 years. I am located in MN. I am waiting to find out when my appointment is with an oncologist. What questions did you ask?

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@dontteachhate45, I'm sorry to hear that metastasis to the liver has been confirmed. Here are some questions to consider asking:
- Do I need any additional tests?
- What are my treatment options?
- What are the potential side effects of each treatment option?
- Is there one treatment you feel is best for me?
- How long can I take to decide on a treatment option?
- How aggressive is metastatic melanoma?
- What signs and symptoms should I keep an eye out for?
- What are the next steps?

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My sister was diagnosed with melanoma in the back of the eye. The diagnosing docs recommended enucleation or removal of the entire eyeball. I told her to get another opinion by a top expert. She went to a clinic famous for treating eye cancers, and within 5 minutes they told her it was a freckle. They said they saw this particular misdiagnosis multiple times every year. Of course, if there's a larger tumor, it is much clearer what you've got. For smaller alleged eye cancers, find the very best docs and hospitals for another opinion. In my sister's case, it was the third opinion.

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I hadn’t been to the eye doctor in 14 years after I had LASIK done in 2010. This spring I went to my regular eye doctor and she told me I had a freckle in my eye and should get it checked out, I saw ophthalmologists in Bismarck, Minot, and Fargo who all told me it was nothing, just a Nevis, but the doctor in Fargo recommended I see a specialist at Mayo in Rochester “just to be sure.”The ocular oncologist I saw I diagnosed me with Coroid Melanoma in my left eye. She said it was caught early and all my blood work and CT scans appear clear. I am scheduled for Plaque Brachytherapy in Rochester on August 5th. Which my doctor says has a 95% chance of success. Being only 40 my wife and I are hoping this prognosis and outlook is correct.
I guess I am looking for advice on things to do or consider during this time.

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@jlstaloch

I hadn’t been to the eye doctor in 14 years after I had LASIK done in 2010. This spring I went to my regular eye doctor and she told me I had a freckle in my eye and should get it checked out, I saw ophthalmologists in Bismarck, Minot, and Fargo who all told me it was nothing, just a Nevis, but the doctor in Fargo recommended I see a specialist at Mayo in Rochester “just to be sure.”The ocular oncologist I saw I diagnosed me with Coroid Melanoma in my left eye. She said it was caught early and all my blood work and CT scans appear clear. I am scheduled for Plaque Brachytherapy in Rochester on August 5th. Which my doctor says has a 95% chance of success. Being only 40 my wife and I are hoping this prognosis and outlook is correct.
I guess I am looking for advice on things to do or consider during this time.

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I was diagnosed with Choroid Melanoma in April, 2023. I was treated with Brachtherapy (3 day span) My initial scans were clear . I saw the Dr every 3 months with Liver Uktrasounds every 6 mos. My tumor size did NOT shrink until the May, 2024 checkup. As you can guessed I was distraught for 12 months that the radiation treatment showed no improvement in tumor size. My hope is to anyone going through the uveal melanoma diagnosis is that don’t give up hope for improvement because I am witness it took a very long year. I am promoted to 6 mo Dr check ups with B scans and will continue to have Liver Ultrasounds every 6 mos for the first 5 years from original diagnosis. I wake up every day reading my daily prayers and then get moving to enjoy every day that God and my Doctor gives me. One Day at a Time!

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@jlstaloch

I hadn’t been to the eye doctor in 14 years after I had LASIK done in 2010. This spring I went to my regular eye doctor and she told me I had a freckle in my eye and should get it checked out, I saw ophthalmologists in Bismarck, Minot, and Fargo who all told me it was nothing, just a Nevis, but the doctor in Fargo recommended I see a specialist at Mayo in Rochester “just to be sure.”The ocular oncologist I saw I diagnosed me with Coroid Melanoma in my left eye. She said it was caught early and all my blood work and CT scans appear clear. I am scheduled for Plaque Brachytherapy in Rochester on August 5th. Which my doctor says has a 95% chance of success. Being only 40 my wife and I are hoping this prognosis and outlook is correct.
I guess I am looking for advice on things to do or consider during this time.

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@jlstaloch, you must be so grateful and relieved that you doctor in Fargo recommended getting the spot checked out. Early treatment has a higher success rate.

I hope you saw the helpful post from @sszantay and their wise counsel about keeping the worrying in check. Naturally, we all know that is harder said than done. Improvement may take time.

You asked about things to do or consider between now and your appointment on Monday. My first tip would be to do something enjoyable this weekend.

Do you know how long you will have the radioactive plaque on your eye? Will your wife being staying in Rochester with you during this time?

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