After a shock diagnosis that resulted in her losing an eye, Michelle Taylor found herself desperately seeking information about ocular melanoma. Now Michelle’s joined the Uveal Melanoma Registry, so others don’t have to encounter the lack of clarity that she did.
When Michelle suddenly lost much of the vision in her right eye, she assumed it was a detached retina – a relatively common issue that can be resolved with minor surgery.
It wasn’t until an ophthalmologist referred her to see another specialist the very next morning – an “expert in his field” – that she began to suspect she was dealing with something more worrying than a detached retina.
A quick Google search of the doctor’s name confirmed her fears. The specialist in question was an ophthalmologist who specialised in cancer.
A series of tests found that Michelle’s loss of vision was a result of a large choroidal melanoma in her eye. The size and location of the tumour meant that enucleation – the removal of her eye – was necessary.
Just 10 days later, Michelle underwent the life-altering surgery.
“It all happened so quickly that the whole thing felt like a dream. I didn’t really have time to fully process it until my eye was gone,” Michelle said.
“I was devastated, but my family and our sense of humour helped raise my spirits. When they visited me in hospital after the operation, they brought me a present that still makes me laugh to this day: an eraser in the shape of an eyeball.”
When Michelle Googled the name of her specialist, she didn’t know that it would be the start of a long journey of searching for information about uveal melanoma.
“Aside from international references and social media support groups sharing second and third hand information on management and treatment options, there just wasn’t much out there that was Australian and I really felt alone and in the dark,” Michelle said.
“My ophthalmologist put me in touch with Prof Anthony Joshua who gave me a clear treatment plan and suddenly I felt like I was in the right place. I felt seen.”
“It was at this time that I discovered AOMA and their website, where everything I wanted to know about my condition was in one place. It was incredible to learn that a group of Australian experts were working on treatments and management options for uveal melanoma. It was an exciting prospect and gave me hope for the future.”
Michelle enrolled in the Uveal Melanoma Registry, which is gathering patient data from sites throughout Australia, Europe and the US to support the development of novel therapies for this disease.
“It’s my goal to help make a difference and ensure others don’t have to go through what I did – the uncertainty and lack of information. By taking part in the Uveal Melanoma Registry and sharing my knowledge with others going through an ocular melanoma diagnosis, I hope that I can do my small part to be a beacon of shining light in their darkness.”