Cheryl's Story: The reality of being treated for breast cancer during COVID

February 4th is World Cancer Day. Every two minutes someone in the UK is diagnosed with cancer[1]; every day 23 people will have a breast? carcinoma in situ[2]. That’s the type of cancer that Cheryl, 50, was? diagnosed with in May 2021, in the middle of the COVID-19 pandemic.??

Stories like Cheryl’s shed light on the people within the NHS - and the? importance of making sure that the health service is able to help people in? need. While her experience is a clinical success, that’s not always the case. And that’s why we exist: to understand human behaviour and improve? health services with artificial intelligence (AI). Our technology helps unlock appointments so that everybody can have access to healthcare.?

‘It was never scary for me. I don’t know whether that’s? because of age or because of reaching a point in life? where nothing really surprises or shocks me.’?

Cheryl first noticed a lump in her breast while she was in the shower. The? NHS recommends that all women get to know how their breasts usually? look and feel so they can spot any changes quickly and speak to a GP[3].? You can learn more about how to check your breasts here. Cheryl waited 2?weeks to see if the changes she felt were hormonal, but they didn’t? change or go down. It was then that she called her doctor. But, because of? the COVID-19 pandemic, face-to-face appointments were unavailable and? Cheryl had to insist to the receptionist that she be referred to the doctor? for a phone appointment.??

After her appointment, Cheryl received her referral letter within 3 days and began tests a week later. Speaking about the moment that the doctors called her back, she says: ‘I kind of knew without them having to say? anything, and it wasn’t anything they said, but the speed with which they? asked me to come in.’

Cheryl was diagnosed and treated quickly. But record numbers of people? are waiting more than three months for treatment[4]. 85% of patients should begin treatment within 2 months of an urgent suspected cancer referral but the last time this target was met was December 2015[5]. Nearly seven? years ago. We’re challenging this with innovative technology - learn more about how Deep Medical are tackling NHS waitlists here.?

Because of COVID-19 safety precautions, the oncology nurse and consultant that Cheryl met at King's College Hospital NHS Foundation Trust were wearing masks. ‘It was a very different way that they’re having to say to you you are diagnosed with cancer.’ The specialists told Cheryl she had Stage 2 Ductal Carcinoma In Situ (DCIS).? In the UK, around 6900 women are diagnosed with this type of breast? cancer each year[6]. It means that some cells in the lining of the ducts of? the breast tissue have started to turn into cancer cells. These cells are contained inside the ducts and haven’t started to spread into the surrounding breast tissue.?

‘It’s part of your body, it’s part of you: you don’t know? how you’re going to feel, you think there’s going to be? a part of you missing.’?

Cheryl elected to have a mastectomy. ‘I didn’t want to bother waiting for all? the different tests. They’d seen a lump - I was quite happy to go straight? forward with the mastectomy… It wasn’t a hard thing for me, but that? doesn’t mean that I dismiss why it would be a struggle for a lot of? women.’??

‘I was given a breast prosthetic which wasn’t my skin? tone. And I thought ‘Do you understand what you’ve? just given me? It doesn’t look anything like me.’?

Going through a mastectomy is incredibly brave. But Cheryl’s experience? demonstrated issues that many Women of Colour face during and after? treatment, including intra-community issues. ‘There was a lady I? remember meeting in the waiting room, and she was Muslim. And for her,? the whole experience from taking off her hijab to how her community might react and the religious connotations, was really difficult.’?

Since routine mammograms restarted in summer 2020,? nearly 1.5 million women haven’t been screened for breast cancer[7].

In fact, statistics show that cultural and language barriers and a lack of? tailored interventions can prevent women from non-white backgrounds attending important breast cancer screenings. These appointments, also? known as mammograms, play a key role in spotting breast cancer early,? and all women aged between 50 and 53 are automatically invited for an? appointment[8]. Sadly, Black women are nearly twice as likely to be diagnosed with Stage? 3 and 4 breast cancer compared to white women, and are more at risk of? dangerous, invasive cancers[9]. And it’s important to remember that both? cis and trans men can be diagnosed with breast cancer. Early stage? diagnosis saves lives. That’s why it’s so important that everyone has? access to screening services and treatment.?

Luckily, Cheryl’s cancer was caught at Stage 2. But she still faced? challenges after treatment. The NHS offers breast prosthetics to women? following mastectomies, to be worn inside a bra to replace the volume of? the breast that's been removed. Cheryl was offered one. ‘[The prosthetic? or breast form as it's also known] was of a light beige colour and labelled? 'Tawny'. I’m quite dark skinned but there was no conversation about ‘how? do you feel about this’ or ‘there are certain companies that might match? your skin tone a bit better.’ It literally was ‘here’s your prosthetic, does it fit,? is it comfortable.’ It wasn’t about how it made me feel as a woman. And it’s? not my colour and it doesn’t work for me.’?

‘Having cancer is my beautiful thorn - you can look at? it in one way, but it’s actually opened up a whole world? I would never have known.’?

During her treatment, Cheryl noticed that there were areas where the patient pathway could be improved. So she became part of the lived experience board. She coped with her diagnosis and treatment by applying her curiosity and business mindset to question and discover how her experience might influence and improve things for others. ‘I think that stemmed from my? grandparents… [They’ve] always been about family and community and helping others who aren’t as fortunate as yourself.’?

It might be a surprise for people who aren’t familiar with the breast cancer diagnosis pathway, but a referral appointment can end up taking much longer than a patient realises. Cheryl saw this firsthand. ‘In your head you? think it’s going to be just a check-up, but then you’re being told to lie down? on a couch, and an oncology nurse is going to come in. And then you’re going to Radiology to have pictures taken. So you’re moving from different? departments not really knowing what’s going on - and for those who have? come into a ward or department and all these tests are happening and you’re on your own, like during COVID… It can be quite scary.’?

Cheryl didn’t take in all the information she was told in her first appointment. The problem was that her letter didn’t clearly communicate the length of time it might take to carry out all the possible tests. Her other commitments, like car parking charges and picking up her daughters from school, were looming: ‘And then you have to think about if it is bad news? and you have to get back into the car and go back to your life - that’s not how the experience should be.’??

‘The letters you get are very systematic. There’s a lot to take in but as a? patient all you’re interested in, when those letters arrive, is ‘when am I? being seen and who am I being seen by?’ I’ve been a part of a project to put that into layman’s terms and explain without being alarmist.’ She? worked with her hospital so that people coming for breast cancer referrals? know what to expect. ‘When you come to your appointment, there are? certain steps that could happen and that means that you could be there a?little bit longer; you might be suspected of having cancer and to expect that word as well.’?

And it’s not just about appointment times. As Cheryl said: ‘it’s not? accessible for everybody if English isn’t your first language.’ So making? those letters more accessible means that people, like Cheryl, have a? much better experience at a time when that’s so important. ‘It enables that? patient to feel looked after from the get-go. It’s the first step to your? journey, so it’s got to be right.’?

‘If you feel uncomfortable about something, don’t ever? ever hide that.’??

Cheryl has advice for other women diagnosed with breast cancer. ‘Don’t? be afraid to question. Ever. As much as you might be dealing with? ‘experts’ they are experts to a point. No one can tell you how you’re? feeling. No experience is the same. Don’t be afraid to say you don’t understand something. Your testimony helps others.’??

She also recommended reaching out to support services online. ‘You get? so many leaflets every appointment but being online enables you to take things in… Making things more accessible.’??

One of those services is Alike . Alike is a registered charity offering a? mobile app across iOS and Android. Users can sign up with email or? Facebook, and discover other people like them. The charity was created? following their founder’s experience of leukaemia: ‘I know first-hand how?isolating cancer can be and how many young people have to face it every? year. I wanted to find a way to use the technology around us to combat? that loneliness. Alike creates that opportunity to build friendships and be? part of a community that doesn't just support, but understands. It's? genuinely groundbreaking.’?

Find out more about our charity partner Alike here:

The NHS has information about breast cancer screening here

If you’re worried or concerned about changes in your breast, contact your? GP. You can find out more about breast cancer from organisations like?Breast Cancer Now and? CoppaFeel!

1. https://www.cancerresearchuk.org/health-professional/cancer-statistics-for-the-uk#heading-Zero

2.? https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/ breast-cancer#heading-One?

3. https://www.nhs.uk/common-health-questions/womens-health/how-should-i-check-my-breasts/

4. https://www.theguardian.com/society/2023/jan/10/record-number-of-cancer-patients-waiting over-104-days-for-treatment?

5. https://news.cancerresearchuk.org/2022/11/10/the-rise-of-the-long-waiter-why-cancer-waiting times-are-showing-the-pressure-more-than-ever-before/?

6. https://www.cancerresearchuk.org/about-cancer/breast-cancer/stages-types-grades/types/ductal carcinoma-in-situ-dcis?

7. https://breastcancernow.org/about-us/media/press-releases/50-rise-in-number-women-in-uk-who have-not-had-vital-breast-screening-services-restarted?

8. https://metro.co.uk/2022/07/30/breast-cancer-one-million-people-have-missed-mammogram appointments-17086965/?

9. https://breastcancernow.org/about-us/media/facts-statistics/how-are-people-ethnically-diverse backgrounds-impacted-breast-cancer