When Jane Hickling discovered she carried a genetic mutation that put her at raised risk of breast and ovarian cancer, she was in no doubt about what she wanted to do.
Jane had lost her mother to breast cancer, and other women in her extended family have also had the condition. After genetic testing revealed she was at high risk, in 2023, she was offered a preventative double mastectomy. “I knew straight away I wanted preventative surgery as I was so worried about getting cancer,” she explains. “I have yearly scans but that doesn’t reassure me because something could grow in between.”
But almost three years on, Jane is still waiting to have the surgery. She is one of a worrying number of women with “breast cancer genes” who are being left waiting – sometimes for years – because of a lack of surgeons and surgery space on the NHS.
“My life is in limbo,” says Jane, 46, a care worker from Bicester, Oxfordshire, and mother of four. She was told to expect to wait up to 12 months for a surgery date in 2023 but has faced delays and cancellations since. “It’s driving me up the wall waiting,” she says. “I know the recovery is going to be tough and take a while – I just want it over and done with.”
Up to one in 300 women are thought to carry a mutated BRCA gene. Around seven in 10 of women who have it will develop breast cancer in their lifetimes, compared with just over one in 10 women in the general population. The gene mutations also increase the risk of women developing ovarian cancer and of men developing prostate cancer. Scientists are still researching to understand how the gene changes work and why they may increase risk of these cancers.
Women with affected BRCA1 and BRCA2 genes are usually advised by doctors to have yearly mammograms and ovary scans to screen for cancer – and many are also offered risk-reducing surgery to remove their breast tissue before any tumours can develop. Actress Angelina Jolie had a double mastectomy in 2013 and, later, removal of her ovaries, after she discovered she had a BRCA mutation following her mother’s death from ovarian cancer.
When women choose to have preventive surgery, they are offered the choice of having no breast replacement, breast implants or breast reconstruction using their own tissue. The breast removal and reconstruction procedure is usually done in the same day-long surgery in preventive cases, to reduce recovery time and infection risk.
But waiting lists for this major surgery have spiralled since the procedure was suspended during the Covid-19 pandemic. A 2024 study of 40 NHS centres by surgeons at University Hospitals Coventry and Warwickshire NHS Trust found more than 2,200 patients confirmed to have a genetically high risk of cancer were waiting for surgery and that it would take around two and a half years to clear the backlog.
Jane Hickling lost her mother to cancer and she has a heightened risk“We know many women with [a genetic risk] or significant family history face very long waits for risk-reducing and accompanying reconstructive surgery, as NHS services struggle to meet demand,” says Louise Grimsdell, a senior clinical nurse specialist at the charity Breast Cancer Now. “Long waits for these surgeries were made worse in some areas during Covid, as they were deprioritised, and haven’t fully recovered across the UK.”
Grimsdell says higher rates of genetic testing in recent years – largely due to increased awareness from charity campaigns and high-profile cases like Jolie’s – also mean more women are being identified.
Tracy Watson, 62, from Sheffield, was told by a consultant she was a “ticking time bomb” for breast cancer in autumn 2019. Although she was never tested for BRCA gene mutations, doctors were confident she had a high genetic risk as her mother and two of her sisters have had breast cancer, while a third sister had womb cancer.
She was referred for a double mastectomy and told she would get the operation within six months. But it was delayed by lockdown and then by a backlog of cases and staff shortages. Tracy did not have her surgery until January 2023 – more than three years after her referral. By then, lab tests showed tissue in her left breast had turned pre-cancerous.
Tracy, who has a grown-up daughter and works as a support officer for disabled children in residential care, says the wait was “horrendous”. “You know you need it doing,” she says. “Every day you think: ‘Is this the day I’ll find a lump?’”
She now volunteers to support other women in her area who are facing long waits for surgery. “It sickens me to see other ladies going through this,” she says. “Their lives are on hold while they are waiting.”
Tracy Watson: ‘Every day you think: ‘Is this the day I’m going to find a lump?’Grimsdell says long waits are compounding distress for women who have already have to cope with the difficult news they are likely to develop cancer. “Choosing whether to have risk-reducing surgery is an incredibly complex and personal decision, so to then be faced with a long wait is likely to cause significant stress and anxiety for many women,” she adds.
It also puts women at risk of developing cancer while they wait, meaning they will unnecessarily endure cancer treatment and risks to their lives. The 2024 study of patients awaiting the surgery on the NHS found at least 40 women had developed cancer while waiting – a figure researchers described as “alarming”.
“While there’s been some progress made in recent years to address some of the issues behind the delays, we’d like to see the NHS across the UK making it a priority to increase capacity, in terms of the number of trusts offering surgery, theatre availability, and having enough specialists trained up to carry it out,” Grimsdell adds.
Consultant plastic surgeon Simon Wood agrees there is a “postcode lottery” in how long patients are having to wait.
While NHS guidance says surgery for women at high risk of developing breast cancer should be carried out within 12 months of referral, in reality, many patients are waiting much longer in trusts which have a shortage of surgeons, operating theatre rooms and/or theatre time slots.
“There are so many pressures on surgeons’ time and theatre capacity that sadly these patients [waiting for risk-reduction surgery] become lower priority in some trusts,” explains Wood. “I am uncomfortable with them sitting on the waiting list because they are a time bomb – you don’t know when they are going to get a cancer.” He has known patients who developed tumours while waiting.
Jane was finally offered a slot in autumn 2024 – nearly a year and a half after her referral – but it was at such short notice that she could not take it, as she could not find cover for her job, or childcare for her children, aged 11 to 18.
She asked for the next available slot in the new year and has even changed her job to give her more flexibility. But she was not offered another date until November 2025. She was all set to have the surgery on that date, only for the hospital to cancel two days beforehand because of staff shortages.
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“I felt sick,” says Jane. “I had psyched myself up for it and lined up childcare – it was such a disappointment for it not to go ahead.” At the time of writing, she is still waiting for the hospital to reschedule her surgery date.
An NHS spokesperson said: “We recognise how distressing it can be to be waiting for preventive surgery, and local NHS services should be working to ensure it is happening as soon as possible for women at high risk of breast cancer.
“Staff are working incredibly hard to bring down the longest waits for patients and the NHS is working with the most challenged trusts to ensure patients continue to see reductions in waiting times right across the country.”
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