Metastatic patients are being ignored - #BCAMANDME
It’s Breast Cancer Awareness Month and everything has turned pink. It’s wonderful that there’s a whole month dedicated to this pernicious disease, but there’s a problem. One important area that doesn’t get the attention it so desperately needs: secondary breast cancer. This is an issue that applies to most metastatic cancers; patients are not being made fully aware of the risks, rates and key signs to look out for when it comes to secondary cancers.
Almost as an illustration of the point, there is one day in this month dedicated to metastatic breast cancer. This year it’s Wednesday 13th October.
What is metastatic breast cancer?
Metastatic breast cancer is when cancer cells have spread from the breast to other parts of the body. It's classified as advanced, or stage four, breast cancer. It means that the tumour in a different part of the body is made up of cells from the breast cancer. Most commonly it metastasises to the liver, brain, bones, or lungs.
What are the facts?
- According to breastcancer.org nearly 30% of women diagnosed with early-stage breast cancer will develop metastatic disease.
- There are 55,900 (Cancer Research UK) new breast cancer cases diagnosed in the UK each year, and 35,000 people living with secondary breast cancer in the UK (breastcancernow.org).
- Some people already have metastatic breast cancer when they are first diagnosed, meaning the initial breast cancer went undetected. Cancer.net estimates this at 6% of first time breast cancer diagnoses.
- Breast cancer is the second most common cause of death from cancer in women and most of those deaths are the result of metastatic breast cancer.
- Cancer.net also estimates (using information from the American Cancer Society) that the five-year survival rate for women with metastatic breast cancer is 28% and the five-year survival rate for men with metastatic breast cancer is 22%.
- At the moment, there is no cure for metastatic breast cancer however sometimes it can be controlled for a number of years with treatment.
- The median survival rate of metastatic breast cancer is two to three years (MET UP UK).
Joanne Taylor at ABC Diagnosis has illustrated it all exceptionally well, highlighting red flag symptoms in infographic form.
The problem with pink
Joanne, from Met UP UK and ABC Diagnosis, like many who have had or are living with breast cancer, is one of many people who admire the principle of Breast Cancer Awareness Month, but feel it’s fundamentally flawed in its execution, especially when it comes to the lack of attention paid to metastatic cancer. You can read more about her thoughts in her article Pinktober - it will turn you green.
This month is like a consolidation of this wider issue. Metastatic breast cancer kills around 1,000 people each month, has a three-year median survival rate, is unilaterally classed as incurable and yet receives only 5 to 7% of breast cancer funding for research. People are not made appropriately aware of the risks of secondary cancers, even though cancer.net estimates that around one in every six people diagnosed with cancer has had a different type of cancer in the past.
Many others are also shouting, loudly, about the issue and were both heartbroken and exasperated when Sarah Harding became the unwitting poster girl for breast cancer, after it metastasised and ultimately caused her death at the age of 39 this year. The feeling was that this is a tragedy that’s happening every day and it should not take the death of a celebrity, one who did not appear to want her life defined by cancer, to bring attention to the problem.
Lisa Fleming (Instagram: @secondarybreastcancerandme), who is living with stage four breast cancer, wrote on the death of Sarah Harding:
“Tomorrow’s headlines will be filled with words such as ‘warrior’, ‘beaten’ and ‘losing’. Little reference will be made to the fact that Sarah wasn’t actually given the chance to ‘win’. Secondary breast cancer doesn’t afford you that. 1,000 women in the UK die every single month from this form. We desperately need people to be aware of this forgotten form of breast cancer.”
Nicky Newman (Instagram: @nicknacklou), also living with stage four breast cancer, wrote:
- Kills 1,000 people every month
- Is STILL incurable
- Only receives approx 5-7% of breast cancer funding for research
- Still lacks equal support for every patient across the UK
- Will affect roughly 30% of all patients diagnosed with a primary breast cancer
- Has an estimate life expectancy of 3-5 years
Mary Huckle (Instagram: @maryhuckle) who is living with stage four breast cancer wrote:
“As someone who was diagnosed 14 years ago, I’ve written about all of the above many times already. What happened to Sarah Harding and the attention her story is receiving is just Groundhog Day. I’m not trivialising the situation in the slightest. I’m actually fucking furious! It makes me see red knowing that we’ve waited for another celebrity to die of the most common female cancer before we all wake up to smell the roses?! Without taking anything away from Sarah, are the 31 ‘ordinary’ British women dying every day insignificant? Were my wonderful, vivacious, living friends so unworthy of attention?
Who actually is fighting our corner? Nobody of significance it seems. Not the government. Or our MPs. Not the Secretary of Health. The NHS. The pharmaceuticals. NICE. The media. The big charities. If only just one of these institutions was on our side. If only. It’s a fact that political correctness and the fear of upsetting the apple cart are issues. God forbid we dare to talk about that ‘deadly’ breast cancer, unless of course we’re shimmying around an IV pole or prattling on about how wonderful life is and how we wouldn’t change it because we’re now doing great things, and how we’re far better for it. Please do me a favour! Nothing is more precious than life itself. Given half the chance I would turn back time in a heartbeat.
One misdemeanour after another. A broken system with far reaching, detrimental effects. Still, we stay dangerously silent. The apathy is terrifying.”
The 35,000Metastatic Breast Cancer patient advocacy group, MET UP UK is dedicated to changing the narrative, to make a practical and to “turning metastatic breast cancer (MBC) into a chronic illness and support MBC patients to gain access to the best medicines to prolong and improve their quality of life. We work towards a day when MBC can be cured.”
All cancers are appalling. All cancers require research and awareness. However, the lack of attention paid to metastatic cancers is lethal. We need a greater investment into prevention, cure, awareness around early red flag warning signs and, when it comes to breast cancer, not only pay attention to 55,900 new breast cancer cases that are diagnosed in the UK each year, but also the 35,000 plus women living with metastatic breast cancer as well.