Has it spread?

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Hi, I have just registered on the site. It was back last September that I was diagnosed with an Ocular tumour  on the back of my left eye. St Pauls did not want to do a biopsy due to it being near the optic nerves. I had an operation to inset markers and then had Proton beam therapy at Clatterbridge in October. I find out in March if it worked. I stress a lot as my right eye is a lazy eye from birth and losing the left eye would mean I might, for instance,  have to give up driving. The other stress is I have to have 6 monthly scans on my liver to check if the cancer has spread, not knowing is very scary as the prognosis for liver cancer is quite bad.  I often wonder how other people cope with the constant fear it has spread?

  • Hello Sammy. I’m sorry to hear of your diagnosis with Ocular Melanoma, I fully understand the stress this is causing you, but only to a point, as I did not have a lazy eye.
    I was diagnosed in October 2013 at Liverpool, was treated with Proton Beam Radiotherapy at Clatterbridge. Since I have regular eye checks at St Paul’s and liver ultra sound every 6 months - my surveillances have recently are now annually.

    I was a nervous wreck at the beginning but since joining a support group via OcuMel UK have learnt so much about eye cancer, the group have also helped me put so much in perspective.  You are very welcome to join via OcuMel UK.

    It’s still early days for you Sammy with still much to process.

    The team at St Paul’s are so helpful as is our support group.

    Don’t hesitate to contact me if I can help shall be more than happy to do so.

    All the very best Sammy.

  • Hi Samuel. thanks for that. It is a bit comforting to see someone else who has gone through it and also shows that you can be positive as it does not mean you will develop other cancers. I will look at that other site as it is good to learn about your cancer. Thanks for your input!

  • Hi

    i can see how being a member of Ocumel is helpful in having emotional support but are there other ways in which they can assist with the stress of the liver scans as I can’t see the emotional support really doing much to be truthful as at the end of the day there is a real risk of getting liver metastasis and the treatment options and prognosis are generally pretty poor?



  • Hi SamualG.

    Thanks fir your response. Good news is my liver scan was clear. He also scanned other areas and found nothing. So can relax fir 6 months until the next one. 

  • So pleased for you I’ve been having my checks for six years but unfortunately I started having pain in liver area and ultrasound showed a problem waiting for a X-ray or MRI. I’m pretty certain its not good been having night sweats too. Not much I can do I  just get fed up of not knowing the bottom line everything takes so long now with the NHS. I can then get things in place and organised in the time I have left. 

  • Realy sorry to hear that. 6 years is a long time. Shows that you are never sure you are clear. I hope it is not what you think it is