“I couldn’t believe how much things had moved on” – Nicola’s story

Nicola at home with her kids

“I went into a bit of a practical mode: this is what we need to do, everything will be fine. They sent me for further tests to see how far the cancer had spread and that’s when I found out it was much worse than we initially thought.

“That’s when the reality of what I was dealing with hit me.”

When new mum Nicola was diagnosed with bowel cancer in 2012 – at the age of 31 – it was a shock. The cancer was advanced, having spread throughout her bowel.

But luckily, it hadn’t spread anywhere else, meaning there was still a chance of successful treatment. She had 6 months of intensive chemotherapy, 6 weeks of which included daily radiotherapy too – all aimed at shrinking the tumour so she could have a major 12 hour operation to remove it.

Then, to make sure no rogue cancer cells had escaped, a month after surgery, she had another 3 months of chemo, finally finishing on Christmas Eve 2012. She’s been cancer-free ever since.

But life-changing as it was, Nicola’s experience wasn’t as much of a shock as it could have been. Three years earlier, after living with the bowel cancer for 6 years, her mum died from the disease.

So, in terms of treatment, Nicola knew what to expect – or so she thought.

“Almost everything about the treatment had improved – you could just see how much it had changed from when I went through it with mum,” she said.

“The difference in how cancer care and treatment had moved on in that 10 years was phenomenal.”

Kinder treatments

One big difference was the drugs. When Nicola’s mum was going through her initial chemo in 2002, she heard of a new tablet that could be taken at home, rather than spending 5 or 6 hours in hospital hooked up to an intravenous (IV) pump.

“She’d read somewhere that you could now take chemotherapy tablets at home, so she asked her GP or oncologist if she could be put on those. They said, no, the drug was in the trial stages and not available yet.”

It was a major disappointment.

Wind forward 10 years, and this tablet – capecitabine (also known as Xeloda) – was one of the mainstays of Nicola’s treatment. And our researchers played a key role in its development.

“The difference in how cancer care and treatment had moved on in that 10 years was phenomenal.”

“It’s so much nicer being at home. Being in hospital having the IV, I found the whole thing quite soul destroying. It was so hard being hit with the reality of it all.

“But being at home you can keep yourself in a protective bubble and it’s much easier for your friends to come round and see you.”

Capecitabine is essentially a tablet version of an older chemo drug, called 5-fluorouracil, or 5FU, but tweaked in a way so as to reduce the side effects while maintaining its effectiveness. It’s the product of years of painstaking research, and – like all drugs – rigorous clinical trials.

And it was the expertise of Cancer Research UK-funded doctors that allowed the UK to take part in a series of international trials in the late 1990s, culminating in the drug’s approval in 2006.

Gazing into the double helix

But that isn’t the only thing that’s moved on in the last decade. Doctors’ understanding of the genetic causes of the disease has improved massively too.

“Soon after mum was diagnosed, her mother – my grandmother – also realised she’d been having similar symptoms, and went to get checked out. They found she also had bowel cancer, but unfortunately it was too late to do anything about it.” She died aged 69.

Given the fact that 3 generations of her family had had bowel cancer, Nicola was referred to a genetic counsellor for testing. At this point it was discovered that her great grandfather also died from the disease. That made four generations affected by the same cancer.

We now know that about one in 20 (5 per cent) bowel cancers are caused by inherited faulty genes, causing the disease to be passed down through generations.

Our scientists have led the charge to pinpoint the genes involved, and helped to track down the first one, called APC, in 1991.

Since then dozens more have been found – some rare, some relatively common. Again, Cancer Research UK scientists have played a major role, and are continuing to comb the genome for more.

And their work is far from over. Nicola doesn’t have any of the gene faults that have so far been discovered, so the precise cause of the cancer in her family is still a mystery. “They can’t find a genetic link for my family. They’re confident that there is one, they just can’t find it. But they’re making progress in DNA research all the time.”

Nicola’s doctors plan to re-examine her DNA in a few years, in the hope that new research will provide the answers. “Hopefully we’ll eventually know – for my children, for my brothers and sisters – what the link is between us all.”

But, for now, Nicola is focusing on the here and now.

“To get that one year all clear – that’s when I felt I could finally start to let go of what I’d been through. I’m now doing a degree in English Literature and Creative Writing – something I’ve always wanted to do. So I’m absolutely thrilled that my experience of cancer has given me the courage to move forward and make it happen, because it’s just been the best thing.

“I’d also like to say a massive thank you to anyone who supports Cancer Research UK – I can’t say enough about what they’ve done to help ensure my outcome, possibly my children’s outcome, and also that of anybody affected by cancer in the future”

Henry

Find out more:

• In-depth: Bowel cancer – 40 years of progress
• Spotting bowel cancer sooner – information on symptoms
• Follow Nicola’s blog at https://nicolabourne.wordpress.com/