THE BLOG
04/02/2019 10:02 GMT | Updated 04/02/2019 10:02 GMT

This Is How It Feels To Be Diagnosed With Eye Cancer At 29

For every million people, there are between just five and seven diagnosed with melanoma of the eye each year

Science Photo Library via Getty Images

On Thursday 9 November 2017, I was diagnosed with an Ocular melanoma behind my left eye; eye cancer to you and me.

Until that moment I had always associated melanoma with skin cancer – not to mention having never even considered that you could get cancer of the eye.

I first noticed something wasn’t right in November 2016 when I started seeing flickering in the vision of my left eye. It had never happened before, so I booked an emergency appointment with an optician who took some photos of the inside of my eye. They concluded that I had a ‘floater’, which is when the jelly-like substance in your eye starts turning to liquid – apparently not uncommon to get in your late 20’s or as you get older. The pictures showed a healthy eye and the floaters would disappear in a couple of years as my brain got used to them and learned to tune them out.

However, by the end of summer 2017 I started noticing white orbs floating around my left eye which were obscuring my vision. Thankfully my work pays for eye tests, so at the end of October, I decided to go and have my eyes tested again.

I answered all the optician’s usual questions before telling her about previous eye-related issues and concerns I’d had. She seemed unphased initially, but soon noticed some grey shadowing at the back of my eye. I had more photographs taken of the inside of my eye and everything after that is a bit of a blur.

I was advised I should head to A&E at Brighton Eye Hospital, preferably that day and was swiftly sent for an ultrasound before a doctor confirmed what my optician had suspected; there was a lesion behind my left eye, something I’d never heard of.

All I could think was, I have a brain tumour.

I was asked to come back the following day to meet with a consultant. After another ultrasound he informed me I had a mole on my eyeball that was showing worrying symptoms.

My consultant was keen I visit the ocular oncology consultants at Moorfields Eye Hospital to get their opinion and next steps. I felt surprisingly in control, in full care of the NHS and that everything was going to be OK. No one had used the word cancer, and everyone was being calm, positive and most importantly, thorough.

The consultant at Moorfields confirmed that he had no doubt that what he could see was an Ocular melanoma. As far as tumours of this nature go though, mine was apparently very small, so small it would usually have gone undetected until much, much bigger, when starting to display symptoms; such as affecting the person’s vision. Even then, melanoma of the eye is a rare cancer; for every million people, there are between just five and seven diagnosed each year. It’s also a cancer more common in fair skinned, blue eyed people and the average age from which it develops is 55; I was 29.

That said, I still found the diagnosis itself less upsetting than you would expect – perhaps because the doctor was so reassuring that I would be a prime candidate for an innovative treatment called proton beam therapy.

Proton beam therapy is a type of radiotherapy that uses beams of protons to achieve the same cell-killing effect as conventional radiotherapy, but with much fewer side effects and damage to surrounding tissue.

Ahead of the therapy I had to have an operation to have clips sewn onto my eyeball which would help the proton beam to be delivered to precisely the right location. I had the operation under a general anaesthetic and was able to travel home with my Dad the same evening.

Then in December I went to a specialist centre in the Wirral, which hosts a proton beam machine specifically for eye cancers, and had more pictures and measurements taken to plan the procedure.

It was nerve-wracking waiting for a date for the treatment, especially being so close to Christmas, but once I knew the procedure was fixed for the second week of January I was able to throw myself into enjoying Christmas with family and friends.

In January, I travelled back up to The Wirral and spent four days undergoing a 30-second treatment each day – I was only in the room for 15 minutes each day. I was given a stress ball to hold, and the only scary part was hearing sirens going off to warn the radiographer and physician to leave the room before any radiation was delivered. 

I was also given an ultrasound of my abdomen because this kind of cancer can spread through the blood, and a place it could spread to is my liver. Luckily that showed no lesions, but I’ll have to have those ultrasounds six-monthly for at least 10 years – maybe the rest of my life – along with blood tests and regular check-ups at the eye hospital.

Fortunately, by my six-month check-up in June the cancer had reduced in size; had it not reduced within the year after my treatment, I would have had to have my eyeball removed as proton beam therapy can’t be repeated – something I couldn’t even think about.

I will however lose vision in it as the site of the tumour was so close to my optic nerve that it would have got a similar amount of radiation. I have already noticed some blurriness but am told my other eye will compensate.

I will be forever grateful to the work of researchers for making my treatment possible and to all the wonderful optical and medical professionals for their time and support.

The tumour in my eye will never disappear completely, but it should continue to shrink, and I am now in remission; it feels good to say that.

Nicky Wilmshurst is supporting Cancer Research UK. Get involved on World Cancer Day, 4 February, and wear a Unity Band to make a real difference in beating cancer. Visit cruk.org/worldcancerday