Cancer of the eye

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i hav had uveitis for twelve years, in both eyes, front and back. For he last 4 yeas it has been very well controlled with steroids and I hav had regular 6 monthly checks. However, when I went today I was told I could have cancer of the eye. I definitely have a melanoma but until I have more tests I don't know whether it is malignant.  My .husband was recently diagnosed with oesophageal cancer so me having cancerat the same time will be a nightmare especially as I am severely disabled anyway and he is my carer. Is there anyone n this forum who has had suspected cancer of the eye?

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4 Replies

  • Posted

    Hi, I was diagnosed 2 years ago with ocular  melanoma ( eye cancer)

    Previous had no symptoms just few flashes in affected eye.was discovered in specsavers trough rutine eye check up

    • Posted

      Thank you Erika. Please can you tell me what tests you had to have to confirm the diagnosis, and what treatment. Is everything OK now? Do you have to have regular follow-ups? I will have to go to Sheffield as there are apparently only 4 ocular cancer centres in the country. IT is a bit complicated travelling as I am a wheelchair user and at the moment my husband is going through treatment for oesophageal cancer?
    • Posted

      I’m so sorry you have dificult time 

      I’m in Ireland and we have only one ocular oncologist.i had ultrasound, various pictures taken and instantly confirmed that I have malignant tumor. 

      I had radioactive plaque for 7 days. Was bumpy ride. As I’m young mother with small children. Ocular melanoma orphan illness, as we say. If it’s metastasized, There is no cure. So it’s very important having follow plan, at least twice a year mri, or ct scans for abdomen. As it’s liver usually first place to spread .there is many treatments to prolong life . So timing and being vigilant most important. Sorry, didn’t mean you to scare.. on the other hand many people lives long after even large tumors and removed eye. I have good days and bad ones. But there is life after diagnoses. It’s anoyng and difficult to travel in and from hospitals, but please do. Do you have someone to go with you? When is your appointment? Let me know please how it’s going? And if you need anything to ask please not hesitate. 

      If you on Facebook, there is Fantastic community,all eye cancer patients , support from each other and tons of info and you don’t feel alone in your illness. 

    • Posted

      Thanks Erika, that is really helpful. Usually my husband or my sister would go with me to hospital - it is just a nuisance because this is the third hospital I will have to visit. I regularly visit York Hospital as I have uveitis which is an uncommon condition affecting the inside of the eye and I have a particularly bad version of it, and in addition I attend Leeds St. James as I have a rare liver disease called Carolis disease as a result of which I had to have half of my liver removed last September. Now Sheffield. I will let you know when I have an appointment. Because my liver disease means I am at high risk of

      developing cancer of the liver or bile duct I am very worried about this melanoma being malignant and  spreading to the liver. What is the Facebook community called - is it just "eye cancer"?

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