Every time she lifts her arms to get dressed or hang out her washing, Julie Ford gets a painful reminder of one of the most terrifying experiences of her life. At 7am one day in April 2021, she had gone into hospital, alone and wearing a mask, to have her right breast and lymph nodes removed in a bid to stop breast cancer from spreading. Later that day, still groggy from the anaesthetic, in pain and with surgical drains hanging from both sides of her chest, she had staggered to the door with the help of two nurses. She was eased into a friend’s car and driven home to fend for herself.
While Julie’s breast had been removed, it was not reconstructed. Usually, both procedures are carried out in the same operation. But as reconstruction using tissue from the patient’s abdomen is a complex, eight-hour procedure requiring a large surgical team, it was considered “non-essential” and paused by most NHS trusts during the Covid-19 pandemic.
Like hundreds of women with breast cancer who underwent urgent mastectomies without reconstruction in 2020 and 2021, Julie was assured she could have the procedure once Covid restrictions lifted.
double quotation mark‘I don’t feel able to go out or socialise – and I haven’t been able to have a relationship’Julie Ford
But five years later, Julie, now 62, is still waiting.
A national shortage of specialist surgeons and theatre space, as well as the need to prioritise new cancer cases, means many women like her, who had breasts removed during lockdown, feel they have been abandoned. They live in daily physical discomfort and mental distress as they continue to await the reconstructions they were promised years ago.
“I have to look at this hideous mess every day,” Julie says despairingly of her body post-mastectomy. “It’s really knocked my confidence. I don’t look right in clothes because everything hangs wrong. I’m so self-conscious – I don’t feel able to go out or socialise – and I haven’t been able to have a relationship.”
Julie is a child social care support worker from Sheffield. She was fitted with a temporary implant at the time of her mastectomy, but during the radiotherapy treatment that followed, the implant became fused to her body, causing it to distort. It now triggers a raw, tugging pain every time she moves. “It’s like it’s superglued to the inside of my skin,” she says. “I can’t lift my arm up – it really pulls and hurts.”
Julie Ford in hospital in 2021 after completing breast cancer treatment. Photograph: Courtesy of Julie Ford
After a year to recover from cancer treatment, Julie was referred to the reconstruction waiting list in 2022. But lockdown cancer survivors like her are the least likely to be given a surgery slot.
Patients with active cancer understandably get priority, and have their breast removals and reconstructions all at once. Any additional spaces that become available are given to women at high risk of developing cancer because they carry genetic mutations.
It means that many cancer survivors awaiting delayed reconstruction are “put to the bottom of the list”, says Simon Wood, an NHS consultant plastic surgeon and president-elect of the British Association of Plastic, Reconstructive and Aesthetic Surgeons. He says a postcode lottery means that while some trusts – including his own, Imperial College healthcare NHS trust – have worked to ensure no patient waits longer than a year for reconstruction, others seem to have “barely got started” since the pandemic. A 2024 study found at least 2,200 patients who have survived breast cancer, or who were at high risk of developing it, were waiting for surgery across 40 NHS centres in England, with an average wait of 2.5 years.
And Wood fears there is little to encourage struggling hospitals to clear the backlog. Instead of investing resources into “expensive and lengthy” surgeries such as breast reconstructions, NHS trusts that want to reduce the size of their overall waiting list have an incentive to prioritise quick, simple operations where several patients can be ticked off the list in a short time, he says. “There are capacity issues, with growing demand and a shortage of theatre time and surgeons’ time, but to tackle it you need to have [NHS trust] management that is bothered to find a solution, not just sit on their hands.”
For Alison Wilson, now 63, from Stockport, Greater Manchester, the wait to have her breast reconstructed causes daily grief.
“I just want to have back the part of me which is gone – to look and feel like me again,” she says, breaking down in tears. “I’ve got no confidence. I really admire women who can take their tops off and show their scars, but that isn’t me. I want some normality back in my life, after losing so much.”
She had a mastectomy in April 2020 to remove her right breast, after a cancer diagnosis, but has been told she will have to wait until September this year for reconstruction surgery. While she waits, she has been given a prosthesis to wear in place of her missing breast, which she hates.
“It’s so uncomfortable and it’s horrendous in hot weather,” she says. As she works in airport security, Alison must often pass through body scanners, which regularly pick up her prosthesis as an abnormality. “Every time I walk into work I have to worry about whether I’m going to have to speak to a stranger about my breasts,” she says with a sigh. “It’s impossible to forget about it – you are reminded constantly.”
Like Julie, Alison was discharged on the same day as her breast removal surgery and expected to recover at home. At the time, she was shielding with her husband, Stuart, who had a severe chronic lung condition.
“I was numb,” she says. “We had suddenly gone into lockdown. My husband’s health was deteriorating, I could only wave through a window at my newborn first grandchild. To be told I had to have my breast removed too was just surreal. I couldn’t process it at the time.”
Alison was told no breast reconstructions were being carried out due to lockdown restrictions but never heard anything further from her doctors. It was only thanks to a chance conversation on a bus with someone who worked at her local hospital that she learned the waiting list had reopened in summer 2021.
But when she managed to get an appointment, she was told she was a stone (6kg) too heavy to join the waiting list. When her husband died a few months later, she struggled to manage her weight while grieving. She also found it difficult to exercise with one breast. “I tried aqua-aerobics but [the prosthesis] bobbed off across the pool,” she says.
Having reached the target weight in 2024, she was finally approved for reconstruction surgery in February 2025. “I completely broke down,” she says. “I was finally able to grieve for this part of my body that I had lost. At the same time, I felt the grief of knowing I would have to go through this surgery without my husband.”
double quotation mark‘It’s awful. It has completely destroyed my confidenceRebecca Joselyn
But an admin error meant Alison was mistakenly referred as a skin cancer patient and had to restart the process, so she only joined the 65-week waiting list in June 2025. She has been told she should get surgery by September.
“Mentally, it has been a horrendous journey,” she says. “If I had been able to have the reconstruction at the time of the mastectomy, I wouldn’t be carrying all this extra grief now about what’s happened to my body, on top of losing my husband.”
A spokesperson for Manchester University NHS foundation trust says it “sincerely apologises” for the admin error and has since introduced a new electronic referral system. “We understand how important reconstructive surgery is to recovery and emotional wellbeing after breast cancer and we treat all our patients based on clinical priority,” they add.
The legacy of the pandemic also continues to affect reconstruction waiting times for new breast cancer patients.
Rebecca Joselyn, now 43, had one breast removed in December 2023 but was recently advised she is unlikely to get a reconstruction before the end of 2027. As a 34GG, Rebecca is in extreme discomfort as she awaits the reconstruction of her missing breast. Her heavy prosthetic has to be worn in a special bra, which she describes as “the ugliest thing on the planet”.
Rebecca Joselyn, a silversmith, is waiting for reconstruction surgery after a mastectomy in 2023. Photograph: Courtesy of Rebecca Joselyn
“It’s awful,” she says. “It has completely destroyed my confidence.” Her mental health has been affected and her marriage has broken down. “Going through cancer is hard enough without having to go through this for years afterwards,” she adds.
Like Julie, she is awaiting surgery at Sheffield teaching hospital NHS foundation trust (STH). As of last December, 25 of the 56 reconstruction patients at the trust had been waiting at least three years for surgery, according to data obtained by campaigners under the Freedom of Information Act and seen by the Guardian.
Rebecca was unable to have a reconstruction at the time of her breast removal, as she was too unwell from immunotherapy treatment beforehand. At that point, she was told to expect to wait 12 to 18 months for reconstruction.
Ever since, she has received conflicting messages about the length of the wait. After several appointments, she was called in for a “preoperative appointment” in December 2025. She believed this would mean getting a surgery date within 12 weeks. But when she called in February, she received a devastating update confirming she had around two more years to wait.
“I broke down in tears,” she says. “I can’t move on from cancer while I look like this. Every time I see my body I’m reminded of what I went through. All I long for is to feel normal again. Of course, I am grateful I have not got cancer, but I have got no life.”
She has looked into paying privately for surgery but, at £48,000, it is too much for her to borrow. As a self-employed silversmith, she cancelled her plans to attend the year’s trade fairs and exhibitions to ensure she was free for surgery. “My income has been demolished,” she adds.
The trust has now clarified the December appointment was part of a lengthy process of approving Rebecca to join the waiting list. Jane McNicholas, chief medical officer at STH, admits the trust has not been “explicit enough” about explaining the referral process with patients. “We are very sorry that some patients, including Rebecca and Julie, have been waiting longer than we would like, and understand their frustration and distress,” she says, adding the trust was “improving communication with patients” and it was urgently trying to address the delays.
Louise Grimsdell, senior clinical nurse specialist at the charity Breast Cancer Now, says there has been significant variation in the services offered by different trusts before and after the pandemic. “While some progress has been made in recent years to rectify the issues behind the delays, we’d like to see the NHS prioritising increasing capacity, in terms of the number of trusts offering breast reconstruction surgery, theatre availability, and having enough specialists trained up to carry it out,” she says.
Many of the cancer survivors waiting for reconstruction live in hope of getting a rare last-minute cancellation slot. But it is not always possible to commit to major surgery, which carries a 12-week recovery time, with as little as 24 hours’ notice.
In October 2024, Julie had been awake for 24 hours at her father’s bedside as he died, when she got a call to say there had been a cancellation for a surgery slot the following day. “I panicked because I was shell-shocked. I said it was a bad time: my father had literally just died, there was a funeral to arrange,” she says. “I regretted saying no and called back 20 minutes later but it was too late: the slot was gone.”
Finally, she got another call last month offering a reconstruction surgery date at the end of April. If it goes ahead, it will be nearly five years since her breast was removed. “Every week for years I have waited for that call,” she says. “I still don’t dare to imagine that it will go ahead, that I will have the surgery and this nightmare could finally be over.”
