Anna reflects on her journey through retinoblastoma, a secondary cancer, and life beyond cancer. Please be warned that this article contains an experience of a very rare secondary cancer and therefore could be triggering to some. Please read at your discretion, and contact our support team and refer to the links at the end of this blog post if you would like more information.
“My parents first noticed that one of my eyes was slightly different from the other when I was a few weeks old. As I got older, the difference became more marked (one eye was darker and slightly more bulbous) but I seemed to see normally. They pointed the difference out to the health visitor but she was unconcerned.
When I was 11 months old (that would have been in the summer of 1997), the nursery staff rang my mum at work to say my eye was looking much larger and darker than usual. My parents took me to eye casualty where the doctors quickly diagnosed a detached retina.
I had a CAT scan the following day and it revealed that I had cancer, not just in the problematic eye but in both. I was referred to a specialist at Birmingham Women & Children’s Hospital and my diagnosis of bilateral retinoblastoma was confirmed. My parents were told that my chances of survival were only slightly above 70%.
My initial treatment was chemotherapy, which was unusual at the time and still in the experimental stage. It involved weekly injections and infusions every third week (the drugs being administered through a portacath).
By Easter 1998, the cancer appeared to be under control, and I moved to bi-monthly checkups. Unfortunately, it recurred in September of that year and the doctors decided that I would need radiotherapy. This involved having a general anaesthetic every weekday for a lengthy stretch.
Again, the initial signs were promising but the cancer recurred again in March 1999. This time, they had no choice but to enucleate my right eye. Unfortunately, this was the eye I had the most vision in, with nobody quite sure whether I could actually see out of my left at all.
I think I had a remarkably ordinary childhood, all things considered. Thankfully, it turned out I did have a little useful vision in my remaining eye – enough to navigate around familiar surroundings and to enjoy activities like drawing and painting.
I was an outgoing child and I got on really well at school, without my blindness ever posing too much of an issue. Obviously, it changed how I was taught though – I learned Braille when I started school and then transitioned to using a laptop with screen reading software later on.
I was also able to attend several adventure holidays organised by various blindness charities which included activities like rock climbing, abseiling and canoeing.
In 2007, when I was 11, we went on a family holiday to visit the Christmas markets in the German city of Cologne. Because it was likely to be really cold, my mum bought me a pair of knee-high boots (my first ever proper leather boots – I was so proud of them!).
At some point on that trip, I started to feel a pain in the front of my leg, right below my knee. It came and went at first (mostly only when I wore my beloved boots) but got steadily worse over the next few months.
It was my first appointment at a new late effects clinic when things came to a head. We asked my new consultant about my leg and having examined it, she immediately asked a colleague to step in. I think that’s when we realised that things weren’t looking good.
An X-ray and MRI scan confirmed the worst: a tumour. However, it wasn’t until the results of a biopsy came back that we learned it wasn’t a typical bone cancer but a secondary from my Rb. We were told that it was almost unprecedented for retinoblastoma to metastasise so long after treatment, with only one other similar case having been reported in the medical literature at the time.
After consulting with medics in the USA and Canada, the teams at the Leicester Royal Infirmary and Birmingham Women’s and Children’s Hospital decided to use the same strategy used when the cancer spreads at an earlier age. I had a Hickman line fitted and then underwent 6 cycles of induction chemo, each 3 weeks apart. These left me feeling incredibly unwell while they were happening but did leave me able to attend school (on a reduced timetable) in the gaps between cycles.
The tumour seemed to be responding well to the treatment but given the inexplicable nature of my case, it was decided that I needed to undergo high-dose chemo and stem cell recovery as well.
This involved around four weeks in hospital, two of them in strict isolation. Induction chemo had been bad, but the high dose was on a whole other level, resulting in crippling nausea, a high temperature, and gut and skin problems.
Finally, I was booked into the Royal Orthopaedic Hospital for surgery. This involved removing not only the affected bone but a good portion of what surrounded it, including my knee and a large part of my tibia. This was replaced by a titanium endoprosthesis (comprising an artificial knee joint and telescopic rod) that could be lengthened gradually as I grew. The surgery took four hours and involved a lengthy recovery time, including intensive physio as I effectively had to relearn how to walk.
A few weeks after surgery, we received a call to confirm that the tumour was dead on removal. I was officially in remission again.
Life after treatment meant getting used to life with an endoprosthesis – adapting to having more limited movement and chronic pain. I also found out later that treatment had caused total ovarian failure, meaning I wouldn’t be able to have children and would need to take hormone replacement therapy.
These things were tough to come to terms with but I think life was pretty normal on the whole. I went back to school and threw myself into extracurricular activities like the Duke of Edinburgh’s Award (earning both Bronze and Silver) and student council. I also took up fencing with the help of a club in Nottingham who were incredibly accepting and keen to help make the sport as accessible as possible for me.
Unfortunately, I gradually lost what useful vision I had when I was around 16. The consultant’s best guess was that this was down to the maturation of scar tissue from the Rb.
It was at this age that I caught the creative writing bug after taking part in National Novel Writing Month (which challenges people to write a 50-thousand-word book in the month of November). I went on to study Creative Writing at the University of Warwick and earned both my BA and MA there.
After graduating for the second time, I trained to become a copywriter and now run my own freelance business. I also volunteer for several non-profits, including National Novel Writing Month which involves supporting writers in my local area with their own writing projects throughout the year.
Having had Rb has certainly taught me not to stint on what I value: family, friends and the things that bring me joy (like a good meal).
As for when things get difficult…my approach has always been just to get on with things – give or take the occasional tantrum (yes, even now). Having cancer so young and having it come back in the way it did really did hammer home that “life isn’t fair.” But there’s not a lot you can do about that aside from have a good moan, dust yourself off and carry on.”
Dr Helen Jenkinson, the Consultant Paediatric Oncologist at Birmingham Women’s & Children’s Hospital, said; “Anna’s is a brave and difficult story to tell. As well as admiring Anna’s courage and determination following the very rare diagnosis of secondary retinoblastoma, there is no doubt it will be read with understandable concern by many families. Although we can’t change the mechanisms which contribute to the development of primary and secondary retinoblastoma and second cancers, we can be reassured that we now know so much more about how to manage them.
The management of children with retinoblastoma is a very different story now than it was 20 years ago. Children diagnosed today have a much broader range of treatment options available which has reduced the need for more toxic treatments which can be associated with second cancers. We also understand much more about how our lifestyle choices can affect our long-term health and all children are offered long-term follow up in a Late Effects team who monitor and manage the side effects of treatment. The Late Effects team will educate and support young people to make healthy choices particularly avoiding smoking, wearing sun protection and enjoying a nutritious diet and plenty of exercise.
Anna’s story is a reason not only to admire her positive approach to life but also to reflect on how far the management and long-term follow-up of retinoblastoma has progressed over the last 2 decades.”
If you’ve been affected by retinoblastoma and want more information on secondary or second cancers, please visit our adults after Rb page: chect.org.uk/adults-after-rb. We also have new documents on late affects and cancer risk and self-care. Whilst we understand that although the topic of secondary and second cancers is an important one, it can be upsetting or concerning. Our support workers are also here to help. You can call them on 020 7377 5578 or email support@chect.org.uk.