When, in January 2023, Bernadette Maughan developed pain in her left armpit and breast she instinctively knew something was wrong. But, as there was no lump and her mammogram was clear, she was assured all was well and discharged by the breast clinic she attended. Within 12 months, the disease she had been told she didn’t have would have killed her.
It would take another six months after those first symptoms for Bernie, as she was known to family and friends, to be finally diagnosed with advanced inflammatory breast cancer (IBC), a rare and highly aggressive form of the disease which is often missed or misdiagnosed.
The 52-year-old teaching assistant from Erdington, Birmingham leaves behind devoted husband Gerry and two teenage sons, Sean Francis, 17, and Gerard, 15, who has Down’s Syndrome. Now, her loved ones are campaigning to raise awareness of the disease that took her from them, hoping to save lives in her memory.
“Bernie was our only child and the apple of our eye,” says her mother, Kathleen, 78. “Her dying wish was for us to speak out so that no other woman suffered in this way.”
By chance, both Bernie and her mother had developed breast cancer at the same time. But while Kathleen – who presented with a lump – was diagnosed and treated promptly, Bernie’s experience was very different.
IBC ‘scatters’ in breast tissue, meaning lumps are rare and it rarely shows on mammograms. Instead, diagnosis is made via changes in breast appearance, biopsies and multiple scans.
Following her breast clinic discharge in February 2023, Bernie’s symptoms had rapidly worsened, with her breast becoming more swollen, inflamed, red and painful. She made three further calls to her GP surgery and, during two separate telephone appointments, she was prescribed antibiotics for suspected mastitis and assured her scans had been clear. It was only when she was finally referred back to the breast clinic that a new consultant agreed there was cause for concern and ordered further tests and, in July, she was diagnosed with Stage 4 IBC.
“Bernie completed chemotherapy and was counting down the days to her surgery and radiotherapy,” says Kathleen. “She was determined to fight this.” However, just before Christmas she was admitted to hospital with severe headaches and dizziness. “We knew something wasn’t right,” says her life-long best friend, Lena Deeming, 52, who as part of a devoted band of four school friends shared a ‘round the clock’ care rota with Bernie’s parents in the coming weeks.
By early January, tests had revealed that ‘rogue’ cancer cells had spread to Bernie’s brain. “When doctors broke the news, she closed her eyes and murmured, ‘My two boys’,” recalls Kathleen.
Less than a fortnight later Bernie died, surrounded by her loved ones. “I was there when she took her first breath and her last,” says Kathleen sadly.
Family and friends have now launched Bernie’s Legacy, a campaign to raise awareness of IBC among both medical professionals and the public, in her memory. “While Bernie’s husband supports the boys through their grief, he has given his blessing for us to campaign in her name,” explains Kathleen.
Lena adds, “Bernie was shocked to discover that many doctors have never heard of the disease and there is no protocol for diagnosing or treating it, and so were we. She was adamant that no other woman should have to fight like she did just to get a diagnosis.”
To raise awareness, the family and friends have created an eye-catching Keep Your Eyes Peeled posters, featuring a favourite photograph of Bernie, signs and symptoms (including an ‘orange peel-like’ thickening and dimpling of the breast) and where to seek urgent help.
“We’d like these displayed at all breast clinics and GP surgeries,” says Kathleen “Women should know to look for more than a lump – and insist on a second opinion if they are still concerned.”
Autumn Morris, an IBC survivor, and chairperson of the IBC Network UK, which is supporting the campaign, says: “Sadly, Bernie’s journey is not an isolated case. Because of its rarity, many GPs are not fully aware of the signs and symptoms of IBC. Symptoms can grow rapidly, often over a period of days or weeks, while other breast cancers can take months or years. At diagnosis, 30 per cent of IBC cases are already Stage 4 (advanced), so it is crucial that health professionals are equipped with accurate knowledge of the disease.”
Every morning, Kathleen places freshly cut flowers beside her favourite photograph of Bernie. “We talk to her constantly – and tell her all we are doing,” she says. “Losing our lovely Bernie has left us heartbroken – but the thought of saving lives in her name keeps us going.”
Find out more at ibcnetworkuk.org. To request a Bernie’s Legacy poster, email bernadetteibclegacy@gmail.com
