Breast cancer timebomb: Why we need to find the million women who have missed their mammograms

When Susan Daniels called up to arrange her screening appointment for breast cancer in March 2020, she was told that everything had been put on hold, due to the pandemic.

‘I remember feeling disappointed, but I did understand,’ she tells Metro.co.uk. ‘At that point, going to public places felt like it carried a higher risk than the chance that you might have cancer. 

‘And we were all trying to do the right thing.’ 

But Susan, 62, had always been vigilant about attending her breast screenings and so decided that, in the absence of her mammogram, she would make sure to keep checking herself regularly. 

‘If I hadn’t done that, and I’d waited for my appointment to come back around, I might not be here today,’ she says. 

A couple of months later, while checking her breasts in the shower one day, the former Quality Assurance Manager came across a small lump. Initially, she dismissed it as a cyst, and hoped that it would go away itself. However, when it was still there a couple of weeks later, her husband insisted she called her GP. 

She was given an appointment quickly and, after an examination, her doctor referred her for a rapid diagnosis. She was sent for a mammogram, an ultrasound and a biopsy. 

A few weeks later, Susan was told that she had breast cancer – and to her shock, it was bilateral – meaning that there were lumps in both breasts. This is a rare form of the disease, thought to affect just 1-2% of people with breast cancer.  

The lumps were still small – if she  had waited until her next screening appointment came round, she likely wouldn’t have found them until they’d got much bigger – and much more serious. 

Susan is just one of a huge number of women who had had their mammograms delayed with the onset of lockdown, which brought disruption to breast screening services across the UK.

In 2020/21, around a million fewer women in England were screened for breast cancer (Picture: Getty Images)

‘Breast screening in England was paused in March 2020 due to the Covid-19 pandemic,’ Melanie Sturtevant, Associate Director of Policy, Evidence and Influencing, tells Metro.co.uk. 

‘And, although services were restarted across England throughout the Summer of 2020 they were operating at limited capacity,’ 

‘Additionally, the number of women who attended screening when they were invited dropped significantly, with only 62% of those invited actually getting screened,’ she says. 

The result is that in 2020/21, around a million fewer women in England were screened for breast cancer – which equates to a million missed opportunities to catch the killer disease early enough to treat it.

‘We estimate that (as of July 2022) almost 8,000 people in England are living with undiagnosed breast cancer largely because of the screening disruption,’ adds Sturtevant.

The fact that Susan was diligent in checking herself for lumps, after having her mammogram postponed, potentially saved her life. 

‘The first question I asked the consultant was “am I going to die?”’  she recounts. ‘So many things were running through my head. But the consultant was very reassuring, as it had been caught early.’

Susan was able to get a lumpectomy and, around a month after her diagnosis, she had the lumps removed. 

‘When I look at the scars from my removal, I think it looks like a bit of a patchwork quilt,’ she says. ‘I can’t wear certain things, because I don’t want my scars to be out. But I know I’m so lucky.’

After a lumpectomy and radiotherapy, Susan (centre) is cancer free (Picture: Supplied)

Susan went through a course of radiotherapy after her surgery, and is now taking the drug Letrozel. She’ll take this for a total of five years, during which time she’ll be checked annually. 

Now, Susan is cancer free. 

But the pandemic has had far-reaching consequences on breast cancer diagnosis and treatment – the full extent of which is still unknown. 

With a backlog created by lockdown, the NHS programme opted to operate an ‘open invitations’ system.

‘Changes to the system mean that in England, women in many areas are being asked to contact their local unit to make their appointment rather than being sent a timed appointment,’ Sturtevant explains. 

‘However, we are deeply concerned about the impact of these “open invitations” on uptake of breast screening, especially across certain groups of women who we know are already less likely to attend screening,’ she continues. 

For example, research from the National Institute for Health and Care Research, carried out in Northern Ireland and taking in almost 60,000 women, found that women with poor mental health are less likely to come forward to be checked. 

There are also often barriers for women with certain disabilities, and a lower uptake in women from particular ethical backgrounds – with South Asian women less likely than any other ethnic group in the UK to attend breast cancer screening.  

‘It’s vital that every aspect of the breast screening programme is designed to maximise the number of women that take up their invite’ (Picture: Getty Images)

Suggestions from researchers include targeted interventions, such as more frequent appointment reminders. 

This makes the switch to women being asked to contact their local screening unit to arrange an appointment even more concerning. 

‘There is some evidence that suggests using open invites can lower uptake, but a comprehensive analysis of the data from the NHS breast screening programme is urgently needed to understand the impact the change has had,’ says Melanie. 

‘It’s vital that every aspect of the breast screening programme is designed to maximise the number of women that take up their invite.’

And, while the results might not be conclusive, a new study, published just this week in the Journal of Medical Screening, has found that issuing pre-booked appointments, rather than invitations to book an appointment, could lead to substantially greater uptake of breast cancer screening. 

Stephen Duffy, Senior investigator and Professor of Cancer Screening at Queen Mary University of London, said: ‘As services recover from the pandemic, we need to address the backlog in screens, not just invitations. A screen can only save your life if you attend it, and our results suggest that use of timed invitations can increase attendance considerably.’ 

Dawn launched her #FindTheMillion campaign with Metro.co.uk to encourage women to go for their mammograms (Picture: John Nguyen/JNVisuals)

It’s one of the reasons Labour MP Dawn Butler launched the #FindTheMillion campaign with Metro.co.uk to encourage women across the UK to go for their mammograms. As a cancer survivor herself, Dawn only discovered she had breast cancer through the vital screening.

As she went through treatment and surgery, which involved a breast reconstruction, she discovered just how many women weren’t going for mammograms and decided to turn her experience into activism.

‘Mammograms are the gold standard of breast cancer screening so it really is so important that everyone who gets a letter makes and goes to their appointment,’ Dawn tells Metro.co.uk. 

‘It doesn’t matter if you have symptoms or not, or whether you check yourself regularly, in cases like mine you can have cancer regardless.’

As part of her campaign, Dawn is asking women to let her know when they’ve signed up for a breast screening. One of those who was inspired by Dawn’s story is 64-year-old Stephanie O’Brien, from Cambridge.

‘I was quite shocked to read about Dawn’s diagnosis,’  she tells Metro.co.uk. ‘It was one of the things that prompted me to go for a screening after not having one for decades.’

When she did, she discovered she had Stage 1 cancer in her right breast.

‘I was fortunate, as I would never have discovered my cancer myself. It was so small and so hidden that, without a mammogram I would never have found it until it was much more dangerous.’  

‘I went for a screening at the end of May,’ Stephanie explains. ‘I was then recalled, but I got covid and had a holiday booked, so I wasn’t able to go in straight away. 

‘But I got asked to go for a callback the day after I got back from holiday. I waltzed into that appointment completely oblivious, expecting it to be a benign, fatty lump.’ 

Stephanie was inspired to go for her screening after reading about Dawn’s story (Picture: Supplied)

They did a biopsy straightaway, and Stephanie was told that she had cancer. When she found out, her overriding feeling was that she was incredibly lucky to have found it so quickly. 

‘My poor husband was absolutely freaked out,’ she says. ‘But for me, although it was a shock and a surprise, I’ve never been afraid, never at all. 

‘Of course, once I knew I had it, I wanted it gone. It felt like I had an intruder in my body.

‘The thing that makes my blood run cold whenever I think about it is thinking that I could easily haven’t gone, as I hadn’t done for so many years. 

‘Because of its location, I wouldn’t have seen it until it had done a lot of damage – and that thought is scary.’ 

Stephanie has since had the lump removed and is now awaiting radiotherapy, which she has an appointment for. ‘I believe they’re currently not meeting their target due to the Covid backlog,’ she says. ‘So they’ve had a whole list of people who are much more sick than me, to see first.’ 

‘Reading what had happened to Dawn had an effect on me,’ Stephanie continues. ‘I’m so thankful that I went that day and didn’t put it off any longer. 

‘I can’t stress enough how important it is for women to go and be screened for breast cancer – especially if it’s been missed due to Covid.’ 

 And there are still lots of women still waiting, who have missed appointments because of the pandemic. 

‘NHS England committed to sending out all delayed invites from the COVID period by March 2022, a target which was later pushed to June 2022,’ Sturevant says. 

She adds that ‘both of these targets were missed.’

Dr Louise Wilkinson, NHS England National Specialist Advisor for Breast Cancer Screening, told Metro.co.uk: ‘The NHS continues to increase the capacity of its breast screening services, making them more accessible than ever before with evening and weekend clinics as well as convenient screening vans in local communities.

‘Invites are now being issued above pre-pandemic levels, and we are actively encouraging women who have been invited but haven’t attended an appointment to contact their local screening service to book one as soon as they can – regardless of when they were first invited.’

However, Breast Cancer Now states that they are aware of cases where women who have received their screening invite have not been able to get through to their local screening service to book their appointment, or, when they have been able to speak to someone from the screening team, they are being told that there are no available appointment slots 

‘It’s really worrying to hear that in some areas of England women are struggling to access breast screening, as increasing screening uptake is key to improving early diagnosis and survival rates,’ Sturevant says.

Margaret missed her appointment for a mammogram, but luckily was seen by nurses at a mobile unit (Picture: Supplied)

Margaret Devlin from East Kilbride, almost learned first hand what happens when you miss your screening appointment. 

After receiving her letter for a routine mammogram, Margaret, 64, had various things come up on the day of her appointment that meant she missed her slot. 

She thought she’d get turned away but something in her head made her go along anyway, on the off chance they’d be able to fit her in. Heading along to the mobile unit, she was expecting to be told that she’d missed her appointment and would have a new one issued in the near future. 

But the nurse informed her that things had changed and that, if you miss your routine appointment, you go back into the system. This would mean another three year wait. 

Luckily, for Margaret, the nurses were able to fit her in that day. 

‘A few weeks later, I was told I had triple negative grade 3 breast cancer; a very aggressive form of the disease,’ she says.  

‘If I’d missed that appointment, I would have been dead in a matter of months. I wouldn’t be talking to you now.

‘In the moment I was told I had cancer, I visualised my death and my funeral – I could see the chapel and my friends, the coffin… it was like an out of body experience.

Margaret was told she had triple negative grade 3 breast cancer; a very aggressive form of the disease (Picture: Supplied)

‘I then got thinking about all those other women who haven’t had their mammogram, whether because of Covid, or just because something happened that day that meant they couldn’t go. 

‘There must be women out there who had tumours that were treatable, that will now be untreatable. It’s horrendous to think about.

‘I want women to know that they don’t chase you if you miss an appointment – you have to chase it up. Please don’t put it off.’   

Breast Cancer Now has been calling on the Government to set out how it will address the shortfall in the number of women screened and find these missing women. 

‘To help achieve this, we need a fully funded, long-term workforce plan, alongside the upcoming ten year Cancer Plan, to ensure we have the right workforce in place to deliver timely screening for all eligible women,’ explains Sturtevant.

‘The government also needs to be actively monitoring the variation in uptake between breast screening units and offer support and resources where needed.

Life is only going to get more stressful with the cost of living crisis. I don’t want people putting their health further and further down the list

‘Lastly, the Government needs to develop an Inclusive Recovery Plan for the breast screening programme and commit to researching the impact of open invitations on uptake and health inequalities.

‘The Breast Screening Programme is vital in helping to detect breast cancer at the earliest possible stage when treatment is more likely to be successful.

‘ We encourage women to attend breast screening appointments when invited and regularly check their breasts, reporting any unusual changes to their GP as soon as possible.

‘Checking your breasts only takes a few minutes. It could be when you get dressed, when you’re showering or putting on moisturiser. There’s no special technique, it’s as simple as TLC: Touch, Look, Check.’

MP Dawn Butler adds, ‘Breast cancer impacts everybody. You can say, “I’m fit, healthy, I don’t smoke, I don’t drink; I’m fine”. But that’s not how it works. 

‘I’m lucky that I’m well now. All the cancer has been removed and I’m on Tamoxifen – to help stop cancer cells growing – for five years and hopefully after that I’ll be given the all clear.

‘My mission now is to find the missing million mammograms. I want to find the women who have been sent letters and have put them to one side. 

‘Life is only going to get more stressful with the cost of living crisis and what I don’t want is for people to put their health further and further down the list.’

Women can book an appointment by contacting their local NHS breast screening service here. For support or information speak to a Breast Cancer Now expert nurse via their free, confidential Helpline on 0808 800 6000.

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It’s though that almost 8,000 people in England alone are living with undiagnosed breast cancer largely because of the screening disruption brought on by Covid-19