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I don’t want another rare cancer patient to be told: ‘There is no treatment for you’

In her own words, paracyclist Liz Clarke-Saul tells how she has been diagnosed with one of the world's rarest cancers, but celebrates a new fund-raising milestone

06 March, 2020 — By Liz Clarke-Saul

Liz Clarke-Saul, fourth from left, with fund-raising relatives

BEING told you have incurable cancer at the age of 29 is nothing short of devastating.

What makes it even harder to deal with is being told that there are no treatment options, no drugs or therapies that are known to get rid of the cancer or even slow down the spread of disease. I was first diagnosed with adamantinoma, a rare form of bone cancer, in 2001 at the age of 12 and I underwent multiple surgeries before having my leg amputated as a result at the age of 14. I had a decade of follow-up and was clear of disease for 17 years before it was picked up by accident on a scan in the summer of 2018.

In the time between my two diagnoses, no new treatment options had been made available. Adamantinoma is rare, it accounts for less than 1 per cent of all incidences of bone cancer each year, which account for around 1 per cent of all cancer diagnosis.

It’s so rare that I had more chance of winning the lottery.

When I was re-diagnosed in 2018, it took me a long time to get my head around my prognosis, and I doubt it is ever something that I will come to terms with but what I do know is that in many ways I am still lucky. Unlike so many diagnosed with cancer, I am lucky to have time with my loved ones who have provided us unwavering and invaluable support. I had the time to get married to my husband, and time to travel and see new parts of the world.

I’ve also had the opportunity to think about what I want to achieve in my lifetime and how I want to be remembered. I don’t have a bucket list as such because what would I do if I reached the end of it? How would I feel if I died and I hadn’t completed it all? What I do know is that I want to change the landscape of adamantinoma for patients in the future so that another me, in however many years time, wouldn’t be sat down by their oncologist and be told that there was nothing they could do.

It was clear what needed to happen: with no research taking place specifically into adamantinoma anywhere there is no possibility of new treatments coming through for patients.

Liz Clarke-Saul in action on her bike before her latest diagnosis

Rare diseases receive very little funding and if no one else was going to enable the research to happen then I needed to do it myself. Saturday marked Rare Disease Day. Held on the last day of February each year, it seeks to raise awareness amongst the public of rare diseases and the impact they have on the lives of those affected.

This year was particularly special as my ambition to start the research into adamantinoma was realised. A grant call went out from the Bone Cancer Research Trust for the first ever UK research project into adamantinoma which had been funded by the Fund that my family set up in May 2019.

We launched the Liz Clarke-Saul Fund for Adamantinoma Research in partnership with the Bone Cancer Research Trust with this goal in mind. An interview in the New Journal last year about the fund was the first time I had spoken publicly about my diagnosis and what it really meant to me and my family.

It had taken nearly a year until I was ready to share my story but once I had, the support from friends, family and total strangers was incredible.

It is hard fundraising for a disease that no one has heard of but everyone can understand the devastation that a cancer diagnosis has upon a family.

With everyone’s support, in December we hit our initial fundraising target of £20,000 meaning that my dream of funding this research could become a reality.

This year’s Rare Disease Day felt like a milestone for my whole family. We have big ambitions to fund more research next year – it needs long-term investment to make real progress – and whilst breakthroughs are unlikely to happen in my lifetime, I am delighted that we have made this first step.

l To support the fund go

l Liz Clarke-Saul is a paracyclist who has represented Team GB. She works in King’s Cross.

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