They are the women who are dying from secondary breast cancer – but feel ignored by the charities set out to help them.
From being labelled the ‘angels of death’ to being made to feel guilty for not ‘winning their battle’, British patients suffering with the incurable condition have revealed why they’re campaigning for more awareness.
Secondary breast cancer, also known as metastatic breast cancer, is when tumour cells which started in the breast move to other parts of the body, meaning it can never be completely cured.
But following the end of Breast Cancer Awareness month, it is perhaps surprising to find that not every woman with the disease is happy about the often star-studded campaigns, fundraisers and hashtags such as #wearitpink which raises millions for the organisations.
Many women who have been told their cancer is incurable have shared their outrage with FEMAIL after admitting they feel they have been side-lined, ignored and underfunded, claiming little is ever mentioned about secondary breast cancer.
Instead ‘pink positivity of “cured and move on and that’s it, end of treatment”, is pushed by charities, and it simply does not tell the whole story’, insists Jo Taylor, 51, from Oldham, who developed secondary breast cancer seven years after receiving treatment for primary breast cancer.
Frustrated by breast cancer charities’ seemingly low-key approach to secondary breast cancer, Jo and other sufferers have formed a patient advocacy group, METUPUK, to help people gain access to the best medicines to prolong and improve their quality of life.
Here, we speak to three women who are fighting to raise awareness about the condition – despite admitting: ‘We probably won’t even live long enough to benefit from our campaign’…
They are the women who are dying from secondary breast cancer – but feel ignored by the charities set out to help them. Pictured: Jo Taylor, 51, from Oldham, who developed secondary breast cancer seven years after receiving treatment for primary breast cancer
Frustrated by breast cancer charities’ seemingly low-key approach to secondary breast cancer, Jo (pictured) and other sufferers have formed a patient advocacy group, METUPUK, to help people gain access to the best medicines to prolong and improve their quality of life
Secondary breast cancer patients claim that charities, which promote ‘pink positivity’, exclude them because their stories are too negative. Pictured: Cancer Research UK’s Race For Life
‘Don’t believe the “pink positivity”’
Jo Taylor, 51, from Oldham, who developed secondary breast cancer seven years after receiving treatment for primary breast cancer.
WHAT IS SECONDARY BREAST CANCER?
Secondary breast cancer, also known as metastatic breast cancer, is when tumour cells which started in the breast move to other parts of the body.
The secondary cancer can take years to return, and does not always reappear in the breast.
Some 35,000 people are thought to be living with the disease – some 35 per cent of women who get breast cancer will be diagnosed with secondary cancer within 10 years.
Places commonly affected by spreading cancer include the bones, brain, liver, lungs and skin.
While primary breast cancer can usually be operated on or cured with drugs or radiation, secondary cancer is incurable.
Because secondary cancer has already started spreading around the body you can never be completely cured of it.
But chemotherapy, hormone drugs and other treatments can slow down the growth and spread of tumours and improve patients’ lives.
Life expectancy varies depending on how advanced the cancer is, but many women live for years with the condition under control.
She says: ‘Every day, 31 women die from secondary breast cancer. Between 20-30 per cent of those diagnosed with primary breast cancer will develop secondary cancer and the median survival rate from diagnosis is on two to three years. It is heartbreaking.
‘The fact remains that the UK currently has the lowest five-year survival rate for breast cancer in comparison to all other European countries of a similar wealth.
‘The pink positivity of “cured and move on and that’s it, end of treatment”, is pushed by charities, and it simply does not tell the whole story.
‘Women are not been give the information they need to understand if they have developed secondary breast cancer.
‘Around 6 per cent of patients already have developed secondary breast cancer at diagnosis. We are sold a lie that self-checking will always save our lives.
‘But more awareness of secondary breast cancer will help women extend their lives – and hopefully get the funds to make it a chronic and not a terminal condition.’
She added that those with breast cancer are often left unaware that as NHS patients they do not have access to the same potentially life-saving treatments as those who can pay for private healthcare.
Jo says: ‘I don’t think that the public have any idea that there is this inequality with NHS vs private healthcare. Certain drugs are only funded for particular stages of treatment within the NHS. There has been an explosion of Go Fund Me for treatment, because the NHS don’t support patients enough.
‘For example, many are having to find funding to support drugs like traztuzamab (a monoclonal antibody used to treat breast cancer) that have been around for 18 years, but not available after your second line of treatment.
‘I know cases where patients have to pay over three thousand pounds every three weeks even though the medication may be available on the NHS – but because they have had another drug, they are not applicable. There is zero flexibility. A very unfair situation for women who are fighting for their lives.’
‘It’s easier to ignore us’
Bex Lewis (pictured), from Stockport, was diagnosed with primary breast cancer in 2017, which developed to secondary breast cancer in 2019
Bex (pictured) claims one reason for the charity sector’s reluctance to highlight the issues facing patients with the incurable condition is because women who are dealing with their first diagnosis don’t want to hear about it
Bex Lewis, from Stockport, was diagnosed with primary breast cancer in 2017, which developed to secondary breast cancer in 2019.
She claims one reason for the charity sector’s reluctance to highlight the issues facing patients with the incurable condition is because women who are dealing with their first diagnosis don’t want to hear about it.
Bex adds that many women report the support networks of other primary breast cancer patients disappear when they get a secondary diagnosis.
She says: ‘I think for many, we’re seen as “angels of death” – we’ve got what they don’t want, and it’s easier to ignore us.
THE SYMPTOMS OF SECONDARY BREAST CANCER
Symptoms of secondary breast cancer may include:
- Feeling constantly tired
- Constant nausea
- Unexplained weight loss and loss of appetite
- Aching bones
- Breathlessness and cough that doesn’t go away
- Headaches and dizziness
‘We’re often told to “ignore all the statistics” as primary patients. I never knew that it was 30 per cent possibility that cancer could come back.’
She adds: ‘It’s hard to get reliable figures – spending is mixed in with prevention and primary awareness so true figures are hard to come by. It appears charities only put around 5-12 per cent of budgets towards metastatic research – and some of that may not be into new treatments.
‘We are given one day – October 13 – to promote secondary breast cancer, which is pretty shocking. For example, male breast cancer, which kills 80 men a year is given a whole week of awareness as opposed to our single day.’
Given the lack of coverage from the mainstream charities, METUPUK launched their #IAmThe31 campaign to try and draw attention to the women living with – and dying too soon from – secondary breast cancer.
Emma Fisher, 39, from Sheffield, who received her secondary diagnosis in 2018, launched METUPUK’s social media campaign, spending website, scheduling social media and learning video editing to produce an awareness film.
Emma comments: ‘We didn’t get any coverage, not even a retweet from the breast cancer charities. It’s as if nobody cares.’
’I haven’t “won the fight”’
Tassia Haines (pictured), 28, from Port Talbot, Wales, is an outdoor activity instructor at Go Ape, currently on sick leave
Tassia (pictured) found out she had primary breast cancer in 2016 at the age of 24. She had chemotherapy and a mastectomy but in January 2020 she was diagnosed with secondary breast cancer
Tassia (pictured with her partner) is engaged and blogs and creates cartoons for awareness of secondary breast cancer
Tassia Haines, 28, from Port Talbot, Wales, is an outdoor activity instructor at Go Ape, currently on sick leave. She is engaged and blogs and creates cartoons for awareness of secondary breast cancer.
She found out she had primary breast cancer in 2016 at the age of 24. She had chemotherapy and a mastectomy but in January 2020 she was diagnosed with secondary breast cancer.
She says: ‘It’s a shock knowing I don’t have much time left. When people look at me, I can see real pity in their eyes. It can feel like people are watching and waiting for you to die. On the flip side, some family members have not been able to grasp the reality of my diagnosis and the ignorance is so much more frustrating.
‘There are some women who have primary breast cancer who don’t want to hear about the statistics and the experiences of those with secondary breast cancer.
‘Sometimes I feel that because I haven’t “won the fight”, others believe I didn’t check hard enough, or did something wrong. Many are more upset about the potential of their worst fears, rather than thinking about the feelings of those who are dying.
‘Ironically, by silencing their voices, they are hindering their own chances in future, as we are fighting for them. We will probably not live long enough to benefit from our campaigning.
‘I am stunned at the lack of urgency in finding new treatments. Cancer Research UK are making around £634million in a year and they have yet to find an alternative to chemotherapy, which can be barbaric.
‘Breast Cancer Now say they aim to make secondary breast cancer chronic by 2050. That is far too slow. We don’t even have accurate data on anything secondary breast cancer, including something as simple as mortality rates.
‘You can’t build a case or change anything without obtaining evidence for how it is right now. It is a complete shambles.
‘Charities should be lobbying for things that actually impact the lives of those with terminal cancer too. As an NHS patient in Wales, I feel treatment is worse if you live far away from London and can’t afford private. Overall, I feel we are seen as the “dirty” side of cancer. I feel less emphasis is put on our condition because it is not attractive or profitable.’
Tassia (pictured) said: ‘It’s a shock knowing I don’t have much time left. When people look at me, I can see real pity in their eyes’
Creative Tassia makes cartoons (pictured above is an example) for awareness of secondary breast cancer
Breast Cancer Now said: ‘Breast Cancer Now is wholeheartedly committed to supporting and advocating on behalf of people with secondary breast cancer. This focus is at the heart of our ongoing campaign work, to ensure that all women with secondary receive the best possible treatment, services, support and care.
‘This includes our successful campaigning activity that has seen secondary breast cancer treatments made routinely available to patients on the NHS, such as the ground-breaking drugs Kadcyla and Perjeta.
‘Alongside our ongoing campaigning activity, we fund world-class research to find out why breast cancer spreads, how to treat it when it does spread, and ultimately how we can prevent it. For example, our research into new treatment options for secondary breast cancer in the brain.
‘We provide support and information for anyone affected by breast cancer, including for example our Living With Secondary Breast Cancer course which we have made available online during the pandemic. Anyone affected by primary or secondary breast cancer can also speak to our expert nurses by calling our free Helpline on 0808 800 6000.
‘In line with our approach throughout the year, to us Breast Cancer Awareness Month is as much about secondary breast cancer as it is about primary breast cancer.
‘We marked the start of the month with the launch of our new report,‘Press Play: getting and keeping breast cancer services back on track, which shines a spotlight on the profound impact COVID-19 has had on both primary and secondary breast cancer to date.
‘The report findings built on our activity earlier in the year to raise awareness of how the pandemic is impacting people affected by secondary breast cancer. Throughout October, we have been sharing the experiences of people affected by both primary and secondary breast cancer online, for example through blogs and Facebook live events, and through our campaign work.
‘Our ambition is that by 2050 everyone diagnosed with breast cancer will live and be supported to live well – and while the COVID-19 pandemic has affected a lot of our work, what remains the same is our unfaltering commitment to champion everyone affected by breast cancer, be it primary or secondary breast cancer, so that they receive the very best care and support today and we provide hope for the future through our research.’