I would like to highlight the lack of support, info and follow ups for those of us with Ocular Melanoma. If it had not been for the UK charity www.ocumeluk.org I would not have found out that my cancer has a 50% chance of spreading to my liver and that the ultrasound scan and blood tests offered as follow up are not good enough to find METS while it is treatable, although not curable. We must have MRI with contrast every 6 months to have the chance of finding early METS. Currently we have to fight ourselves to get referred to Southampton hospital where the oncology team really care.
There is no pathway set up for our follow ups. When METS are found we have to fight again to get funding for treatments.
This is a rare cancer but should be given the same importance as other cancers. We have no chance of remission or cure – our cancer is for life and we deserve the follow ups to give us a chance!!!
OcuMel UK is our lifeline.