I had blurry vision in my left eye in July/August 2013. After the 3rd trip to local optician, he spotted that my optic nerve was swollen and made an appointment at A&E for me that evening – I had to travel to a hospital an hour away as that was the only one that had an opthalmic consultant on duty (it was a Friday – 13th!)
I had several blood tests that night to rule out various things but a CT scan the next day determined that there was a mass behind my eye.
The following Thursday I was at Moorfields in London for a whole day of tests. They discovered there were two tumours, one large and one small. The larger was a puzzle as it was vascular and they could not see, at that time, whether it was connected to the smaller mass.
An MRI did not show any cancerous indications but it could not be ruled out and so I was booked for a biopsy 3 weeks later. (I had to wait for aspirin to leave my system before the biopsy; I was taking aspirin as I was pregnant after 3 recurrent miscarriages which made my care more complex.)
I had the biopsy and cancer was confirmed, the staff at Moorfield were great throughout, they kept me informed and made it clear what the plan was – I was to have my baby early and then they would operate to remove the masses/possibly my eye when I had recovered from my cesarean.
I had my pre-op assessment and was told that due to the tumour growing and being close to my bone, I would lose eye, muscle and tissue. A counsellor came to see me in my room as soon as I was admitted and talked me through various questions I had. The team had also organised a PET scan, although I did have to phone myself to try and get it before the operation as it would be delayed by some weeks if I could not have it before.
Post op follow up has been ok, I have been to Bart’s for radiotherapy where the staff were excellent and made it as painless and positive experience as they could.
I have seen an oncologist for follow up and have had an Ultrasound of my liver, but am not happy that they do not routinely do MRI, as for this type of cancer metastasis show up in the liver and MRI with contrast can pick them up much more quickly than US.
For this reason, I am in the process of trying to be referred to Southampton as they are, in my opinion, the leading hospital when it comes to follow up for Ocular Melanoma.