Patient Stories

Michelle Taylor

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 coordinated by Melanoma and Skin Cancer Trials (MASC Trials) and 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.”

Jessica Rowe

At 25, Jess was living her best life. It was 2007 and the young advertising professional had moved to London, where she balanced her burgeoning career with an active social calendar. But Jess’ life was thrown into disarray when her father suddenly passed away from cancer.

“It was devasting. My dad was fit and healthy, so it came as a huge shock. There was so much to process and realise he was never coming back – the finality of his passing was overwhelming. So, I took a break from ‘real life’, left my job, and bought a ticket to Greece to live in the Mediterranean for a few months,” Jess said.

It was while on this much-needed vacation that Jess started to experience a flashing white light in her right eye. Putting it down to a temporary side effect of spending too much time on bright, sunny beaches, she made a note to wear sunglasses and a hat every day and didn’t think too much more of it.

But when the flashing persisted for seven days and began to change colour, Jess went to an optometrist who diagnosed her with a detached retina.

“I went to the hospital in Athens soon after, ready to have my retina reattached so I could continue my trip. But a pre-op scan revealed that my problem was much bigger and scarier than a detached retina. The strange flashes I was seeing were the result of a choroidal melanoma.”

Still reeling from the shocking diagnosis, Jess rushed back to Australia for urgent brachytherapy, or plaque-therapy, treatment in Melbourne.

“Getting that diagnosis so soon after losing my dad to cancer was shocking and filled with fear – particularly as there was very little information at the time about ocular melanoma. I was so naïve too; I didn’t even know you could get cancer in the eye. Fortunately, after a few months the treatment was deemed a success so I could put the whole thing behind me and move on.”

Nine years later, one of Jess’ regular ultrasounds delivered a crushing and unexpected blow. Her cancer had returned, metastasising in her liver. Despite having the two lesions surgically removed and undergoing immunotherapy, two years later another four metastases were discovered.

“I was feeling great, so it was a brutal punch to learn it was back – again! I couldn’t believe it. All that old trauma and anxiety was reopened and without the support of my boyfriend, family, friends and medical team, I don’t know how I would’ve got through it.”

Jess was eligible to receive an innovative treatment, Tebentafusp. In fact, the treatment was so new that Jess was the first person in Victoria to receive it outside of a clinical trial.

“I had a very strong and uncomfortable physical reaction to Tebentafusp. But once it settled down, my body responded well. I now have treatment weekly, which has halted the growth of my metastases and my prognosis (and head space) is much more positive. I’m just incredibly grateful – and lucky – that I was able to access this life-saving treatment.”

“Sharing my experiences with other ocular melanoma patients – or ‘ommies’ as we call each other – has really helped me process it all. There’s such a fantastic and collaborative community out there who share information and offer wonderful support. Plus, organisations like AOMA, whose Summit I had the privilege of speaking at this year, have been a game changer for giving people assurance and hope that treatments are out there.”

Jess’ advice to anyone going through an ocular melanoma diagnosis?

“Know that you’re not alone and reach out for support, because it makes a world of difference. Whether it’s a partner, family member, friend from work, or anyone – you’ll need someone in your corner to vent or cry to when things get tough. Try your best to enjoy life’s little moments too, like watching a movie with a loved one, a morning stroll with your dog, or eating something delicious. And don’t sweat the small stuff – it just isn’t worth it.”

Watch Jess’ talk about her experience with ocular melanoma and Tebentafusp at the 2022 AOMA Summit.