The first indication that something was wrong came during what Margaret assumed would be an ordinary optician appointment.
“I went for a routine eye check back in June 2012. It was an advanced test and the optician took many photos of my eye. I was given the all clear,” says Margaret.
However, when Margaret, 79, from the South Coast of England, returned to her opticians in October that year to collect her glasses, she told the dispenser she had been seeing what looked like a hair in her vision that she could not seem to brush away.
“It did not worry me too much at the time – it was something I just mentioned in passing. Luckily for me, the dispenser took it seriously straight away and booked me an appointment with my optician.”
After further tests with her optician, Margaret was referred to Moorfields Eye Hospital. By the end of her day at Moorfields, Margaret was told she had stage 4 uveal melanoma, an advanced form of a rare eye cancer.
Melanoma is a type of cancer that develops from the cells that give our skin, hair and eyes their colour. Uveal melanoma is uncommon, making up only a small fraction of all melanomas, and affects around just five people per million.
“I was told a tumour had been found, and it was too large for any therapeutic options other than to remove my eye. I was absolutely stunned. Everything had happened so quickly.”
Margaret’s vision quickly deteriorated, and by the time of her surgery she had lost 50% of the vision in her right eye.
“Within 10 days of mentioning the issue at my opticians, I had surgery booked at St Bartholomew’s Hospital (Barts) to remove my eye,” says Margaret.
“The idea of having my eye removed felt like such a drastic step. I was so shocked that I sought a second opinion the morning of my scheduled surgery – I needed to be certain I was making the right choice. That second opinion confirmed that the tumour had grown even larger. At that point, I had no doubt that removal was the right decision,” says Margaret.
Although the surgery in 2012 was successful, adapting to life with a disability brought new challenges that Margaret had to learn to navigate.
“After the emotional impact of everything, it took me a little while to realise the practical impact of losing an eye. I lost about 40% of my overall vision, and without 3D sight, everyday tasks like judging distances while playing golf or pouring a drink required adjustment.
“Losing sight on my right side also meant becoming more aware of how I position myself day to day. I now tend to avoid sitting with people on my right. It was not explained in exactly those terms at the start, but I quickly learned to adapt and make it work,” says Margaret.
Margaret was also warned that there was a risk the cancer could spread to her liver, which is common in stage 4 uveal melanoma. This is because melanoma cells from the eye often travel through the bloodstream and tend to settle in the liver, where the blood flow and the liver’s environment make it a favourable place for the cancer to grow.
“I went for regular ultrasounds at my local hospital and everything was going well, until autumn 2015 when a secondary tumour in my liver was discovered. Immediately I knew I needed to be in the right hands. I knew the cancer was rare and information about it was limited, so I knew I needed specialists,” says Margaret.
After expressing this to her eye surgeon, Margaret was referred to Professor Peter Szlosarek, a specialist ocular oncologist working in London and the East of England.
When it comes to healthcare, there is a big difference between being told what will happen and being genuinely involved in your own care. Known as patient-centred care, this approach treats patients as equal partners, tailoring support to their individual needs and wants.
Giving patients a voice in decisions about their care can make a meaningful difference to their outcomes and overall wellbeing.
When faced with a rare and serious diagnosis, Margaret worked closely with her medical team to make informed decisions that reflected what mattered most to her.
Professor Szlosarek outlined her options, including immunotherapy – a type of cancer treatment that uses the body’s own immune system to find and destroy cancer cells – or exploring whether surgery could be feasible.
Immunotherapy can be delivered through IV infusions, injections or pills, and works by boosting the immune response or helping immune cells to recognise and attack cancer.
While it can be used on its own or alongside other treatments, immunotherapy can cause a variety of side effects including fatigue, skin rashes and diarrhoea.
“I had to really think about how I felt regarding the options. I used the BRAN acronym, which helps one consider the benefits, risks, alternatives and what might happen if one does nothing. I knew immunotherapy could have side effects, so I decided to enquire about the possibility of surgery,” says Margaret.
Professor Szlosarek therefore recommended Margaret to meet with Professor Hemant Kocher, Liver and Pancreas Surgeon at The London Clinic.
