Gynaecological cancer awareness - Katie's story

Katie, a patient at The Royal Marsden, talks about her journey from learning she had cancer, surgery and treatment, and how she's doing one year on.

Katie Wilkins, standing by a canal, smiling at the camera

Where it started

My story starts back in 2003. I’m living the student life at Cardiff University, and am right in the middle of second year exams. I’ve been back and forth to the doctors with shooting pains in my tummy, each time being sent away with different solutions – from antibiotics for a bladder infection, to paracetamol for period pain.

One morning, when I can barely climb out of bed, my housemates take me to A&E and I’m admitted to hospital. Turns out it was neither an infection nor period pain, but instead two borderline ovarian cysts – one the size of an orange, the other a grapefruit (or so I’m reliably informed afterwards).

That summer, I have surgery to remove them and like many 22-year-olds with the world at her fingertips, I crack on with enjoying life, finishing my degree, climbing the career ladder and feeling invincible.

Fast forward 17 years and it’s April 2020. I’m married, living in Jersey, and there’s a global pandemic kicking off. Those familiar shooting pains had started again, and with the pain getting worse, I book an appointment with the doctor. Because of my medical history, I know a CA125 blood test, a blood test which checks for raised levels of a protein called CA125, is the main indicator, and I make sure this is taken, with a referral for a scan.

Within a week, I’m lying on the bed at the radiography clinic, knowing immediately what’s going on inside. The radiographer’s face said everything. The cysts are back… But the C-word still never crosses my mind.

The next few weeks are a blur of consultations and referrals. Because Jersey is a small island, I’m quickly referred to Mr John Butler, Consultant Gynaecological Oncology Surgeon, at The Royal Marsden in London, where more ‘complex’ cases are taken on.

Mr Butler has confirmed I will need surgery that will remove both ovaries. There’s no time to sit back – further scans show changes, and they want to operate fast.

Having surgery

In July 2020 I’m stood on the infamous steps of The Royal Marsden, saying goodbye to my husband. I know I’ll be in hospital for up to a week. I’m nervous but feel strangely calm and composed.

My surgery is longer and more complex than expected, but I’m ok and they are pleased with how it went.

I build strength remarkably quickly considering I now have a scar down the length of my abdomen, and I’m out of hospital six days later.

A few weeks later, we’re back at The Royal Marsden for a follow up and my results. I never hear those fateful words so many others receive: ‘you have cancer’. Instead, Mr Butler shows me pictures, and talks me through what they found in the various biopsies and organs they’d removed in surgery. In most places, the disease was borderline, not cancerous. But in a few places, there was evidence of Low Grade Serous Ovarian Cancer – a rare variant of Ovarian Cancer, often found in younger women. I need six cycles of chemo every three weeks with two drugs called Carboplatin and Paclitaxel.

My first chemo is terrifying. But the team at The Royal Marsden are so kind. It’s a long day, arriving at 9am, and not finishing until 6pm, but I get through it with the help of Netflix and many family and friends keeping me entertained on WhatsApp.

We get into a rhythm, from breakfasts at Gail’s bakery on the morning of chemo (my favourite!), to regular walks for an afternoon coffee. It all helps maintain some normality. Sure, I’m tired, and the first few days after treatment feel like a stinking hangover, without the party, but on the whole, I escape those dreadful side effects, for which I’m very grateful.

As the weeks tick down, there are moments of hilarity (who knew it was possible to get so emotional over losing nose hair?!), joy, and optimism.

One year on...

The final treatment feels like a momentous milestone. Fast forward to January 2021, and I have the post-treatment consultation. I’ve had a scan a few days before, and the results are in. ‘No Evidence of Disease’. The magic words. I’m overjoyed, relieved and overwhelmed all at the same time.

Now, it’s time to rebuild. My scans remain clear, I’m back at work and beginning to look like my old self again! My hair is growing back thick and fast — I have eyelashes, eyebrows (and nose hair!) again — and being back at the gym for a few months, I feel physically much stronger.

I know the fear of cancer is something I have to live alongside but as Mr Butler reminded me when we first met – we will be lifelong friends – and I’m ok with that.

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