Helen Canning, of Bury St Edmunds, campaigns for new treatments for bowel cancer patients in Breaking BRAF support network
A 40-year-old mum with stage four bowel cancer who is due to appear on national TV is extremely frustrated that potentially life-saving medication is not widely accessible.
Helen Canning, a former teacher who has lived in Bury St Edmunds for 12 years, received her devastating diagnosis on her wedding anniversary in August 2021.
After countless tests at West Suffolk Hospital, the results showed she had the aggressive BRAF mutation and she was told she only had nine months to live.
Despite this, the mum-of-two had a good response to treatments and overcame the initial prognosis.
Helen came together with others to create Breaking BRAF – a support network for patients which campaigns for further BRAF-specific drugs to become available in the UK.
She said: “It’s extremely frustrating when you know there is something out there that could save your life and you can’t access it.
“Although I’ve beaten several stats at this stage, I know the chances of seeing my two daughters grow up is very slim. Less than one in a hundred, it’s horrible to know that.
“Once you know your diagnosis, you have to learn to fight for yourself because there’s only so much NHS doctors can do because their hands are tied by budget.”
A drug called Avastin has been proven to help bowel cancer patients in America, Ireland and other parts of the world – but it is not available on the NHS as the National Institute for Health and Care Excellence (NICE) has said the drug’s success rate is not high enough to justify its cost.
To pay for Avastin privately, Helen said it would cost between £500 to £3,000 for only two weeks worth of medication.
“The cost is horrific,” she said. “It could save someone’s life and we can’t have it.
“Members in Breaking BRAF have made strides with fundraising to fund their treatments, but they shouldn’t have to. If the drugs are out there, why can’t we access them?”
The BRAF mutation is the same that the late Dame Deborah James and newsreader George Alagiah had and Helen will be appearing on Channel 4’s Stand Up To Cancer live show.
She continues to fight her cancer with rounds of chemotherapy and it has now been more than two years since her first diagnosis.