What matters most

At the age of just 26 years old, Megan was diagnosed with stage one ocular melanoma or uveal melanoma.

“It was just like a little flashing light in the corner of my eye, which I ignored for around two weeks, I thought it might be a migraine. I called an optician who told me to go to A&E. As soon as the A&E team looked at it, they referred me to a specialist and then they diagnosed me.”

Megan saw a professor at Sheffield Hospital who suspected it was ocular melanoma based on the characteristics that were showing but the team wasn’t 100% sure. There is a type of benign tumour that looks very similar, so further testing was needed. Photodynamic therapy was performed, and the doctors knew that if it responded to that, it was ocular melanoma and not benign. The tumour reacted to the therapy which confirmed it was ocular melanoma. To begin with, it began to shrink significantly as a result of the photodynamic therapy but then, unfortunately, it stopped responding. Megan went on to another treatment called stereotactic radiotherapy, which caused her to go blind in her left eye.

“If I’m completely honest, in the very beginning, I didn’t understand the severity of the diagnosis at all. Of course, I knew that a cancer diagnosis is bad, but when you look at the tumour it’s tiny – just millimetres. In my mind, I imagined you can treat it and move on unscathed. I was naive, very naive. I didn’t understand the severity of it. Of course, receiving the diagnosis was a blow but they kept telling me ‘We found it really early’. They kept reiterating how small it was. It wasn’t until I started doing research myself and found the charity OcuMel that I learned I had around a 50% chance of this spreading to my liver. At this moment I realised it was much more serious than I had initially imagined.”

Around a year after her first diagnosis, she was informed that the ocular melanoma had spread to her liver. Ocular melanoma can be symptomless, and Megan thinks it is very important to not neglect getting regular eye tests done. Although she had symptoms, usually those that remain symptomless go undetected until it’s already metastasized to the liver. If this happens you can become very poorly, very quickly.

After receiving immunotherapy treatment called tebentafusp, which was tough both physically and mentally, she heard about a pioneering treatment called chemosaturation. The chemosaturation treatment is a trial and has only been around since 2019. Despite its relative newness, the treatment was approved by the National Institute for Health and Care Excellence (NICE) in 2021. Dimitar, her partner, says it is “the best possible option that we have found” for a treatment that can prolong life. The treatment means they cannot do any physical surgery, so it must be all biochemical.

Megan has been fundraising for her chemosaturation treatment. It involves isolating the liver and cutting it off from the rest of the body using a medical device. It then saturates it with an agent that kills cancer. This treatment can be repeated multiple times. Unfortunately, this treatment is not funded by the NHS. She had been advised that she may need up to three treatments to be effective. Megan set out on a quest to raise £80,000 for two treatments at £40,000 each, they very gratefully secured the first treatment through the family but still needed £80,000 for a further two treatments. Shortly after our interview Megan reached her fundraising goal so the treatment can now go ahead. You can still donate to Megan’s JustGiving page here to ensure that she continues to receive the best treatment possible on her journey.

Megan is taking part in our What matters most?’ creative project in conjunction with Marie Curie and Hospice UK. In this project, we will look into what matters most for those nearing the end of life and end of life, carers and healthcare professionals. This project aims to raise conversation and influence the design and delivery of services at local and national level. The aim is to make a difference for future generations living and dying in Wales.

The project will be launched on our website from 1st October 2023

Find out more

over £80,000 to fund her cancer treatment. The chemosaturation treatment was approved by NICE in 2021 but is currently unavailable on the NHS so must be undertaken at a private hospital. Due to the incredible kindness offered by members of the public who heard Megan’s story through various media outlets Megan achieved her goal of £80,000 in June 2023.

Ocular or uveal melanoma is a cancer of the eye. It arises from structures in the middle layer of the eye, the iris, choroid or ciliary body. There are approximately 600 new cases of ocular melanoma in the UK each year, making it a rare cancer. Unfortunately, around half of all patients with ocular melanoma go on to develop tumours in other organs, particularly the liver.

OcuMel UK is a registered charity supporting those affected by ocular melanoma. They help patients and families by providing current and accurate information and emotional support via the website, helpline and online forums.