When I was first diagnosed with breast cancer, none of my doctors ever spoke to me directly about secondary breast cancer. I remember my oncologist, without looking at me directly, cautioning against googling ‘triple negative breast cancer’. By the time I was diagnosed with a recurrence, three years later, I knew triple negative breast cancer – with a reputation for being one of the most aggressive sub-types of the disease – meant there would be limited treatment options. The greatest risk I faced came, not from cancer in my breast, but from it returning to another part of my body such as my bones, brain or liver – secondary breast cancer.

Sometimes described as ‘stage 4 breast cancer’, ‘advanced breast cancer’ or ‘metastatic breast cancer,’ secondary breast cancer doesn’t mean getting breast cancer twice, and it is not a less serious type of breast cancer. People talk about what’s-her-name who had breast cancer and then got bone cancer (they mean Olivia Newton-John). This is inaccurate. Breast cancer which spreads to the bones is not the same as bone cancer. Despite the higher profile given to secondary breast cancer by the charities Breast Cancer Care and Breast Cancer Now, many people still do not know that secondary breast cancer is incurable. It is thought that around 35,000 individuals are currently living with secondary breast cancer in the UK. Treatment aims to slow down the spread of disease, relieve symptoms and give the best quality of life, for as long as possible.

After enduring a second, year-long, Sisyphean struggle of multiple surgeries and chemotherapy, I imagined that I’d pick up the thread of my life from where I’d left it before my cancer diagnoses. Greeted with the expectation that I would be cheering from the rooftops, with a renewed energy and wisdom for life and a bucket-list to boot, I hid my physical and emotional exhaustion behind a ‘positive attitude’ and a ready smile. Like many, I struggled to adjust to a so-called ‘new normal’ which involved long-term side-effects such as lymphoedema, pain, fatigue and menopause-like symptoms. This is the time we often feel most vulnerable. We try not to think about cancer. We try to forget.

Then we get a pain, an ache or maybe a cough. At some point, it is almost inevitable that we will experience symptoms that could be a sign of recurrence, or progression. Around 30% of women diagnosed with primary breast cancer go on to develop secondary breast cancer. It is a frightening statistic. Whatever our individual prognosis, fear persists into the long-term, as I know only too well: last week an unexpected MRI scan provoked severe ‘scanxiety’ (a term coined by people with cancer to describe the fear associated with scans.) My feelings – lying awake at 3am, a knot in the pit of my stomach, traumatic memories rushing to the surface of my consciousness as I fall asleep – are no less intense because almost ten years have elapsed since my diagnosis. Anxiety is preoccupying, the psychic equivalent of a stone in my shoe, it erodes my concentration. Everyday activities require greater cognitive and emotional resources in the face of the looming Fear that ‘It’s back.’

Fear of recurrence for women with primary breast cancer, (and the fear of progression for women with secondary breast cancer) is a significant psychological challenge. Too often, we struggle on our own to manage symptoms, and the amount of attention we should give to them – we don’t want to make a fuss, or, not wanting to be seen as over-anxious, we procrastinate about whether or not to seek medical advice. Patient advocate, Jo Taylor, founder of After Breast Cancer Diagnosis, herself living with secondary breast cancer, produced an infographic which identifies ‘red flag symptoms’ of secondary breast cancer. Our survival, or longevity may depend on our vigilance to symptoms which are more amenable to treatment if they are detected early. Information about secondary breast cancer can empower us to have informed conversations about our health concerns with professionals, and in turn, gain mastery over our fear.

Unfortunately, psychological support for people with breast cancer is limited, and what scarce resources there are tend to focus on support into survivorship following a diagnosis of primary breast cancer. Information about secondary breast cancer often comes with a ‘health warning’ i.e. – this one is a ‘tough read.’ The uncomfortable truth is that an invisible wall exists between women with primary and secondary breast cancer. With just one day allocated to secondary breast cancer in the whole of Breast Cancer Awareness Month, women with secondary breast cancer report feeling isolated in the breast cancer community, or, that their support needs are completely overlooked. The fear evoked by secondary breast cancer means that when women are diagnosed with secondary breast cancer, they tend to find support in groups specifically for secondary breast cancer. There are few opportunities for us to talk, to share experiences, to support one another and gain wisdom as a diverse community.

Secondary breast cancer will never be easy to talk about until there is a cure. For a few women, like Kris Hallenga, founder of CoppaFeel! and diagnosed with secondary breast cancer almost ten years ago, the approach to treatment can be likened to that of “a chronic disease rather than something that kills.” For others, like Radio 5 Live broadcaster, Rachael Bland, who died last year from triple negative secondary breast cancer, the disease advances rapidly. There are scientific advances, but innovative treatments and surgeries which can prolong and improve quality of life are not consistently available on the NHS.

While overall survival rates for breast cancer are rising, it is estimated that around 11,000 people die of the disease annually. The argument is often made that it is not primary breast cancer that kills, but secondary breast cancer. The problem with this perspective is that it suggests that secondary breast cancer is a separate disease from primary breast cancer. It is not. Women with secondary breast cancer were – generally speaking – once women with primary breast cancer. Ignoring this simple truth does a disservice to us all. Primary and secondary breast cancer are not separate entities, they exist on a continuum, and a better understanding of both our common and specialised psychological needs fosters greater mutual support and advocacy for improved treatments. Women with secondary breast cancer need women with primary breast cancer to support and advocate for them; women with primary breast cancer can learn from other women with secondary breast cancer. We need to keep talking about secondary breast cancer.

You can find Tamsin at the BRiC Centre (Building Resilience in Breast Cancer) which promotes resilience in women with breast cancer.