"Would the Prime Minister agree that better data collection [about secondary breast cancer] can inform diagnosis, treatment and... give better outcomes for all patients?"
This was the question put to Theresa May on October 12th 2016 by MP Jo Churchill during Prime Minister's Questions. Judging by Mrs May's response, and her reference to those who have 'come through' cancer, she didn't appear to understand secondary breast cancer.
It's hard to escape the fact that October is Breast Cancer Awareness Month. I've learned to embrace my inner pink (I'd prefer black but no-one likes a party pooper), persuading myself that the life-size pink elephants, tutus and glitter are a subversive way of sticking two fluffy fingers up at breast cancer, which let's face it, isn't pink or fluffy. Only one day, the 13th October, was devoted to raising awareness of secondary breast cancer, and Mrs Churchill, herself diagnosed with primary breast cancer, was specifically referring our Prime Minister to the astonishing fact that only a third of Health Trusts in England and Wales collect data about the numbers of people diagnosed with secondary breast cancer.
Given the widespread ignorance about secondary breast cancer, it's perhaps unsurprising that Mrs May doesn't know that 'secondary breast cancer' doesn't mean getting breast cancer twice. Nor is it referring to a less serious breast cancer. Secondary breast cancer is breast cancer which has spread to other parts of the body. It's sometimes described as 'stage 4 breast cancer', 'advanced breast cancer' or 'metastatic breast cancer'. Many people still don't know that secondary breast cancer is incurable. Treatment aims to slow down the spread of disease, relieve symptoms and give the best quality of life, for as long as possible. Some people live years, but only if they can access the best treatment possible, as early as possible.
It's thought that around 30% of women diagnosed with primary breast cancer go on to develop secondary breast cancer. Sometimes their disease cruelly returns years after the initial diagnosis:
"I was diagnosed with secondary breast cancer in 2015, at the age of 40, nine years after having been given the all clear." Vicky ~ #pathways2resilience
We know from the Breast Cancer Care campaign, Secondary, Not Second Rate, that there are problems with poor care, delayed diagnosis and a lack of data about secondary breast cancer. At the Research Centre for Building Psychological Resilience in Breast Cancer, we hear how isolated and marginalised women feel:
"You also took me away from my primary friends, nurses and support network in a bright sunny waiting area upstairs, instead to be moved down to lower ground floor away from the potential survivors, pink ribbons...... it's as if we have moved over to the dark side, hidden away, we are the failures, we didn't get remission or a cure, we are incurable, we might frighten the other ladies as they don't want to think about the reality that this could happen to them....
BUT cancer we will make people aware of you, we will be counted by the hospitals and authorities, we may not win the war but we will win as many battles as we can."
Janet ~ Not one, not two, not three, but four.....
Fear has been such a big part of my life since my own diagnosis with breast cancer that I turned it into a person, an unruly house guest who became my friend. My friends with secondary breast cancer experience fear in a different way - their focus is on keeping cancer at bay, coping with ongoing treatments and never-ending scans; living a full life in the face of a terrible certainty:
"This time round, having metastatic breast cancer, I find I'm coping better than when I was first diagnosed....I don't know whether it's acceptance I've got it and there's nothing I can do but live with it. I can't change it. Wish I could, it is what it is and now it's part of me 'til I die, sad to say.......Life is for living and I intend to live it to the full when I can, enjoy my family and friends who are a very important part of my life."
Jan ~ Learning to Live with Metastatic Breast Cancer
As our Prime Minister, Mrs May is responsible for the policy and decisions of the government. As a woman, she shares the same one in eight lifetime risk of developing breast cancer as any woman in this country. As a woman aged 60 years of age, it is particularly pertinent to Mrs May that the majority of breast cancers (81%) occur in women over the age of 50. Contrary to popular opinion, the main risk factors for developing breast cancer - being female and getting older - are things we can't do anything about. Just as vulnerable as any woman aged between 50 and 70 years of age, Mrs May will be offered mammograms every three years as part of our national screening programme (women over 70 can request a mammogram).
There are thousands of women living with secondary breast cancer. Women like Janet, Vicky and Jan. Women whose lives are rich and meaningful, whose contributions to their families and communities are significant, despite their disease. These are the real women behind the statistics, they are not 'patients,' they are mothers, daughters, sisters, partners and friends. They are all women everywhere.
Mrs May has the power to insist that all Hospital Trusts record when people are diagnosed with secondary breast cancer, something that has been mandatory for three years. This crucial information could highlight the effectiveness of treatments and assist in the planning of treatment and care to people with secondary breast cancer. The question is, will she?
Find Tamsin at the Centre for Building Psychological Resilience in Breast Cancer