Jo Taylor

Founder of METUPUK 

When it comes to breast cancer, not everyone has the same choices or access to care. We need to do more to support women of colour and those living with secondary breast cancer.

Women living with secondary disease (also known as metastatic or advanced cancer) and women of colour can often feel excluded from conversations around breast cancer. This is despite Black women being nearly twice as likely to be diagnosed with late-stage breast cancer and life expectancy being as low as a little over one year for women diagnosed with secondary disease (when cancer cells spread to other parts of the body). Approximately 28% of women diagnosed with secondary breast cancer will be alive five years after diagnosis.

Two women with first-hand experience who are working to change the conversation are Jo Taylor and Leanne Pero. “People think that secondary breast cancer is a chronic illness that you live with, like diabetes. They think there are lots of treatment options and clinical trials, but that’s not the case. The people affected by it are a hidden population,” explains Taylor, who lives with the disease and set up METUPUK, a patient advocacy group to champion issues relating to secondary breast cancer.

Invisible barriers

Feeling hidden is something that Pero, founder of Black Women Rising – a network for Black cancer patients and survivors – can relate to. Diagnosed with primary breast cancer at the age of 30, Pero received a hostile reception from many in her community. “I was told chemo doesn’t work for Black people and that it must be the white gene that caused me to get it,” she recalls.

During her treatment, Pero was astounded by the number of women who’d encountered similar rejection – something healthcare professionals seemed unaware of. “I overheard nurses describing one patient as ‘difficult’, but if they understood her struggles and how scared she was, they may have treated her differently,” she says.

Invisible barriers are everywhere. A survey from Black Women Rising found that 96% of respondents did not see women of colour in breast cancer-related media, and many women aren’t offered wigs that are appropriate for their ethnicity.

We don’t know how many people are even living with secondary breast cancer.

Improving education

A lack of education in healthcare professionals and the wider public is feeding the problem. As Taylor points out, “We don’t know how many people are even living with secondary breast cancer. That data isn’t collected, even though it’s the biggest killer of women under 50.”

Progress is being made, however. Earlier this year NHS England announced the first ever national metastatic breast cancer audit, which will provide figures of how many people in England are living with secondary breast cancer. Taylor and charities including Breast Cancer Now were instrumental in securing the audit.

Both Pero and Taylor are using their negative experiences to drive change. Taylor is setting up a database so that women can easily access information on clinical trials in secondary breast cancer as well as an infographic highlighting red flag signs and symptoms, which is being signposted by NHS England.

Collaboration is key

Likewise, Pero is collaborating with major organisations and charities. “They have the infrastructure and the programmes; however, they can’t get people of colour to use them,” she says. “I have a community who trust me. If we can come together, we can create inclusive pathways.”

Next month, Black Women Rising is launching an awareness campaign involving UK-wide billboard advertising, events, and a photographic exhibition to highlight experiences of Black cancer survivors.

METUPUK will launch a campaign specific to metastatic breast cancer during Breast Cancer Awareness Month in October. A display featuring 31 individual female figures will reveal the bleak reality of living with secondary disease. It will travel around shopping centres UK-wide and feature online and via social media. 

There is no sugar coating a disease that kills 31 women every day. But if we want to change that stat, we need to include everyone in the conversation.

This content has been initiated, funded and reviewed by Gilead Sciences Ltd.
Job code: UK-UNB-0920
Date of preparation: September 2021

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Although breast cancer is the most common cancer in females aged 25-49, a quarter of young people aren’t aware it could affect them.

Anyone can be affected by breast cancer, but through our research we’ve found that a quarter of young people don’t realise they are at risk. It’s why we’re asking you to know yourself as part of our new campaign. We want you to know your body, know it’s quirks, know how it changes and if you notice something unusual for you, speak to your GP. As well as being less likely to check regularly, this demographic is the most likely to delay seeking medical advice. Our research shows that one in five young people would delay visiting their doctor because of the COVID-19 pandemic.

Early diagnosis saves lives and to support our ongoing mission to ensure young people are informed and proactive about breast health, we want to raise awareness and challenge the singular narrative about breast cancer.

You know your body better than anyone, so if you are concerned about an unusual change, trust your instinct and book an appointment.

Get to know yourself

We are celebrating self-discovery and exploration – an unfiltered and honest portrait of getting to know who you are. Young people are not routinely screened and often overlooked when it comes to breast cancer information. With the end-line, ‘Breast cancer can affect any body. Getting to know yours could save your life’, we hope you will take away the message that breast cancer is a relevant issue to young lives too.

We know that the last year has been challenging and that the pandemic has put people off speaking with their GP, but we are here to tell you that your doctor still wants to hear from you. We all have breast tissue, young, old, guys, gals, non-binary pals – so we should all get to know our chests by checking regularly. You know your body better than anyone, so if you are concerned about an unusual change, trust your instinct and book an appointment. It might feel embarrassing or unnecessary but believe me: it could save your life.

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While the pandemic has thrown us into unprecedented times, one thing remains the same – all women must get any potential symptoms of breast cancer checked. 

The COVID-19 pandemic has brought unparalleled challenges for people affected by breast cancer and our National Health Service, including disruptions to diagnosis.

We estimated that almost 11,000 people in the UK could have been living with undiagnosed breast cancer at the end of 2020, due to the pandemic.

Time for TLC

This Breast Cancer Awareness Month we are reminding people to get any potential symptoms of breast cancer checked by a GP. While most breast changes won’t be cancer, the sooner breast cancer is found the more successful treatment is likely to be.

Many women may know a lump can be a possible sign of breast cancer, but there are other symptoms too – including nipple discharge, dimpling or puckering of the skin of the breast, or swelling in the upper chest or armpit.

While most breast changes won’t be cancer, the sooner breast cancer is found the more successful treatment is likely to be.

We’re urging everyone to make breast checking the ‘habit of a lifetime’, not just this October but always. It’s as easy as Touch; Look; Check.

We also encourage women to attend their breast screening appointments when invited.

Where to turn for support 

Breast Cancer Now is here for anyone diagnosed with primary or incurable secondary breast cancer, to help them get the support they need during the pandemic and to live well with the physical and emotional impacts of the disease. Whether that’s speaking to someone who’s been there or to our expert nurses, we are always with you. 

Looking to the future

It’s now crucial the Government invests in a fully funded long-term plan to tackle the growing cancer workforce crisis so women with breast cancer get a prompt diagnosis.

Equally, while most of the 340 researchers we fund have returned to their labs following closures due to the pandemic, the future of breast cancer research faces many challenges.

We’re doing all we can to minimise the impact of disruptions due to COVID-19 and thanks to our fantastic supporters we will be able to invest an extra one million pounds back into new research projects in 2022. It’s a great first step, but the pandemic’s impact on our fundraising income means it could take another two years to get back to where we were before COVID-19.

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Jacquie Beltrao, 56, was diagnosed with secondary breast cancer in 2020, at the start of lockdown. She explains how it feels to be told your cancer has returned.

The news that Jacquie’s breast cancer had returned and was treatable but not curable came out of the blue and was quite frankly terrifying.

“When you get diagnosed with secondary breast cancer you think, ‘That’s it, I am going to die.’ You want the breakthrough cure to happen now, but nobody is spending money on that in the same way people have been spending money on vaccines for COVID-19. 

Increasing commitment to cancer research

“Unless people take that urgent attitude it won’t happen quickly enough for lots of people. It is an emergency for us. We have stage IV breast cancer and we want that lightbulb moment from the lab. There are so many different possibilities with cancer and leaps and strides are being made in treatments all the time, but it is frustrating when a COVID vaccination is developed in a matter of months. For someone like me, cancer trumps COVID every day of the week.”

There are so many different possibilities with cancer and leaps and strides are being made in treatments all the time.

Jacquie has taken a relentlessly positive and pro-active attitude to her diagnosis. As a keen sportswoman and former Olympic athlete, she has always taken care of her body. Since being told she has secondary cancer, she has blended alternative treatments with the medical advice and drugs of her oncologist and breast cancer team.

“I am bombarding it,” she says. She has changed her diet, going sugar-free, she has oxygen therapy and mistletoe treatment which is good for boosting the immune system and is used regularly in the treatment of cancer in Germany.

Life living with cancer

“Although I am on the latest cutting-edge drugs as well, I was told they won’t work forever so I am doing everything I can to try to weaken the cancer in other ways.

She also has unflinching advice for the medical profession when talking to those with secondary breast cancer, who have an average life expectancy of three to five years.

“My oncologist has been very upbeat and very problem-solving. What I think is terrible is when health care professionals say things like, ‘this is going to be your last Christmas.’ How do they know? Why would anyone say that? People get miracle remissions all the time so you mustn’t take that hope away from people. Be realistic but not pessimistic. I know people who have been living with this for 15 years.”

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Researchers have developed and tested new radiotherapy treatment regimens, treating women with breast cancer with fewer daily doses of radiation, whilst minimising side effects and the burden on patients.

Around 63% of patients diagnosed with breast cancer in England receive radiotherapy as part of their primary curative cancer treatment. 

The total dose of radiotherapy given to patients is traditionally divided into small daily doses, called fractions, spread over a number of weeks. For decades the daily dose has remained small in order to keep side effects to a minimum.  

Shorter treatment courses

However, various trials have shown over the last decade that for early breast cancer, a lower total dose is as effective when delivered in fewer, larger fractions, which can be given over a shorter period of time. 

These kinds of dosing schedules are known as ‘hypofractionated’ radiotherapy. These smarter treatments are kinder to patients too; keeping side effects low and reducing the number of times they have to travel to and from hospital.

These smarter treatments are kinder to patients too; keeping side effects low and reducing the number of times they have to travel to and from hospital.

New clinical trials 

A number of clinical trials led by scientists at The Institute of Cancer Research in London and its hospital partner, The Royal Marsden NHS Foundation Trust, assessed the role of hypofractionated radiotherapy for treating women with early breast cancer. 

Historically, women received radiotherapy in 25 daily doses over five weeks. The UK START trials showed that 15 doses, or ‘fractions’, given over three weeks were as safe and effective as 25 fractions given over five weeks – reducing standard treatment to 15 daily doses in three weeks over ten years ago.

Next step trials 

The next step was the FAST trial, which successfully showed that five larger fractions given as one fraction per week could be delivered safely, causing no more changes in the healthy tissues of the breast as 25 small fractions over five weeks. 

FAST laid the groundwork for the FAST-Forward trial, which tested an even shorter treatment course of five fractions of breast radiotherapy delivered in a single week. 

The FAST-Forward trial results confirming safety and efficacy were published just as the COVID-19 pandemic hit, enabling safe delivery of breast radiotherapy to thousands of women who may otherwise have faced delays or interruptions in their treatment. This 5-fraction regimen has now been adopted as the UK standard for patients with early breast cancer.

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Whilst breast cancer is one of the most common cancers, women of colour have disproportionately poorer outcomes.

Breast cancer is one of the most common cancers and affects one in seven women in their lifetimes. Breast cancer screening and awareness education, along with better treatment, means that 76% of women diagnosed in the UK will live for 10 or more years. But did you know that women of colour and ethnic minorities are more likely to have poorer outcomes and die from breast cancer in the UK?

We know that the risk of breast cancer recurrence and death can be reduced by positive health behaviours, early detection, treatment and breast health awareness, yet Black and Asian women are more likely to be diagnosed with breast cancer at an advanced stage and die. Women of colour see the GP at least two more times before referral so they are often diagnosed later.

Women of colour see the GP at least two more times before referral so they are often diagnosed later.

Raising awareness amongst BAMER communities

The awareness of cancer and behaviour changes that can reduce cancer risk are lower in BAMER communities than the general public, and once diagnosed, they are less likely to participate in clinical trials (Macmillan, Ancora). Health awareness programs are not shared in different languages and resources lack awareness of dietary and lifestyle approaches specific to these communities. 

I am working with Penny Brohn UK to provide diet and lifestyle talks which are specific to the South Asian community, with a breast cancer specific talk on 12^th October.

Improving equity in cancer care

For there to be real change and for the outcomes for women of colour to improve, we need to address the inequalities within our health system which have become apparent during the COVID pandemic and BLM movement. 

This is 2021 and we need to improve equity in the provision of and create culturally sensitive cancer care. One size does not fit all!

Trekstock are hosting an event for health care professionals and changemakers to understand why there is missing data within our health system, how this impacts how cancer care is delivered for marginalised groups and what we can do to improve this. 

This event will take place on 16^th November as part of a wider series of events in Breast Cancer Awareness month. 

The post Why are there fewer women of colour surviving breast cancer? appeared first on Health Awareness.

It is important that women of all ages are aware that lifestyle factors play an important role in the prevention and recurrence of breast cancer.

In 2020, breast cancer surpassed lung cancer as the most diagnosed cancer worldwide and accounts for one in four cancer cases in the world¹. Studies from the International Agency for Research on Cancer (IARC) have shown that a third of all breast cancer cases in Europe can be prevented by maintaining a healthy lifestyle. Looking at the available statistics, this means that each year 192,000 of the 576,300 new cases of breast cancer in the WHO European region could be prevented by choosing a healthy lifestyle¹.

Studies on cancer prevention 

For many years, no one talked about prevention of cancer apart from attending screening programmes. Now, a growing body of evidence shows the link between healthy choices and a lower risk of developing breast cancer.¹

For many years, no one talked about prevention of cancer apart from attending screening programmes.

According to these studies, excess body weight and physical inactivity account for 25-33% of all breast cancer cases². In postmenopausal women, being overweight/obese is associated with an increased risk of breast cancer so limiting weight gain in adult life and maintaining a body mass index (BMI) of 18.5-24.9 is ideal.

Alcohol intake has also proven to be a risk factor. In 2020, it was estimated that 13% of breast cancer cases globally and 21% in the WHO Region Europe could be attributed to alcohol consumption³. Europe has the highest levels of alcohol consumption and alcohol-caused deaths in the world. There is no proven safe level of alcohol consumption, and this is why it is important to raise awareness and spread the message about the importance of limiting alcohol intake.

Breast Health Day 

EUROPA DONNA – The European Breast Cancer Coalition established Breast Health Day on 15 October in 2008. It now runs a yearly campaign to inform women of all ages that lifestyle factors play an important role in the prevention and recurrence of breast cancer and that early detection of breast cancer through screening is crucial. Currently, EUROPA DONNA and its member countries are working with the European Commission towards the implementation of the Europe’s Beating Cancer Plan that was launched last year on World Cancer Day. The Plan has four key action areas: prevention, early detection, diagnosis and treatment and quality of life of cancer patients and survivors that will be supported by 10 flagship initiatives and multiple supporting actions. 

1. Ferlay J, Ervik M, Lam F, Colombet M, Mery L, Piñeros M, Znaor A, Soerjomataram I, Bray F (2020). Global Cancer Observatory: Cancer Today. Lyon, France: International Agency for Research on Cancer. Available http://gco.iarc.fr/today [accessed on 29 July 2021]
2. (IARC (2002). IARC Handbooks of Cancer Prevention, Volume 6, Weight control and physical activity. Lyon, France: International Agency for Research on Cancer.
3.Rumgay H, Lam F, Ervik M, Soerjomataram I (2021). Cancers attributable to alcohol. Lyon, France: International Agency for Research on Cancer. Available from: https://gco.iarc.fr/causes/alcohol, accessed [29 July 2021]

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