A WOMAN from Honeybourne is campaigning for earlier access to genetic testing for breast cancer risk, after being diagnosed earlier this year with the disease.
Mother of four, Ellie Sullivan received the devastating news that she had triple negative breast cancer in February, nine years after her mum Christine died of breast cancer at age 51.
For 10 years, Ellie had raised concerns about her risk at Birmingham Women’s Hospital as Christine was diagnosed at 42 but NHS guidelines state that family members are only eligible for genetic testing if diagnosed aged under 40, plus another close family member.
Ellie, who cut her hair before chemo. Picture Michael Charlton Media
She has launched a Test Us Too campaign, with a UK Parliament petition calling for earlier access to genetic testing, particularly for people who do not have a clear or complete family history.
Ellie, who is a fitness enthusiast and owner of Boo Boo Beauty in Broadway, told the Observer: “I was refused testing because I did not know what type of breast cancer my mum had.
“I kept being told I was too young to get it.
“It’s currently a tick box exercise and because I didn’t know my family history I couldn’t tick the right one.
“I want fairer and earlier access to genetic testing so others have the opportunity to understand their risk before diagnosis.”
Ellie finally got genetic testing only after her diagnosis which revealed she had the PALB gene mutation, which is linked to a greatly increased breast cancer risk.
She is now facing a bilateral mastectomy as part of reducing her future cancer risk which has a high recurrence rate.
Had she known of her high risk of getting breast cancer beforehand she would have taken preventative action.
“I would absolutely have had the preventative surgery as it reduces my risk by over 95 per cent,” Ellie confirmed.
She is also adamant that prevention is better than cure and would save the NHS millions in treating people who have developed the disease should earlier testing be mandated.
Ellie has gone from being very independent to having to scale down her beauty business as she is not able to work at the moment.
“I have been so poorly I am completely reliant on my children at present, she said, who are aged 11 to 21.
She is being supported in her campaign by the Pink Ribbon Foundation which supports people who have been affected by breast cancer and hopes her campaign will reach 100,000 signatures which means the topic will be debated in parliament.
Visit: petition.parliament.uk/petitions/763294 to sign her petition which so far has attracted more than 6,000 signatures.
Triple negative breast cancer develops more often in women under 40 years and 15 per cent of breast cancers are of this type.
All women who carry a PALB2 alteration can receive annual breast screening with MRI scans from age 30 instead of routinely between the ages of 50 and 53.
The UK National Screening Committee advises the Government on criteria for cancer screening programmes although final decisions rests with ministers. NHS England has been approached for comment.
