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Secondary breast cancer - how many people are there like me?

Sue, who was diagnosed with secondary breast cancer in 2012, tells us why she supports our data campaign.

Much of the time I live my life like the next person. I work, I am a mother, wife, sister, daughter, aunt and friend. I keep fit and well and enjoy all life offers. I just happen to have secondary breast cancer.

I’d been through the full set of treatment in 2010-11 for primary breast cancer: chemotherapy, a mastectomy and lymph node clearance, and five weeks of radiotherapy. Then I developed some discomfort in my hip in the spring of 2012.

Researching my treatment options

The results of a scan showed my hip was clear of cancer, but there were suspicious areas on one rib and in a lung. Then in 2014, a monitoring scan revealed an area of concern in my hip – where I’d had the original discomfort. I was given a new drug regime, but I still sought a more aggressive approach to treat the secondary breast cancer.

I researched treatment options and pushed for a second opinion. It looked like I could only have a specialist type of radiotherapy, called CyberKnife, if I funded it myself.

I was fortunate to be referred to an orthopaedic hospital, where I was offered a hip replacement. I’d read about good outcomes from this surgery in small-scale studies, so had few reservations. I doubt this surgery would have been offered to me if I hadn’t done my own research, and might not have been available if I lived in another area.

My recovery was pretty quick. Eighteen months on I’m limited physically only by not being permitted to run (though I have sprinted for the 54 bus on more than one occasion!). I’m taking part in this year’s Pink Ribbonwalk and I’m trying to persuade friends to do the 20 miles, rather than our usual 10. I climb mountains - though I think Everest is a bit beyond my capacity - and I plan to learn scuba diving later this year.

Living with ‘scanxiety’

Things are stable at the moment. So far so good. I make a hospital visit once a month for treatment and haven’t been plagued by too many side effects. But every so often I have to endure ‘scanxiety’ when scans and results are scheduled. This is the worst time for me and something I’m experiencing as I write. I hope that all will be well, every time. So far I have avoided bad news, for the most part. Others with the same disease are less fortunate.

All is well then, until the next scan. This is what makes breast cancer a life-limiting disease in more than one sense. There are things that I cannot do because of it. Life-changing decisions about how you live and the work you do are much harder when you don’t know what your health will be like a few months from now, let alone how much time you have.

My son was starting primary school when I was going through primary breast cancer. Every day I am grateful for the drugs which have been developed and people who took part in clinical trials in the past. Because of these people I am still here. My son is halfway through year 5 and we are starting to plan for secondary school. I want to see him get his A-levels. I want to drive him to university open days and shed tears after leaving him in the halls of residence. This is not impossible but the odds are not in my favour.

Finding out the real numbers

A major problem is that there is no accurate data on the number of people diagnosed with secondary breast cancer. Hospitals, including mine, can find it difficult to plan services as a result. The rough estimate for the number of people living with secondary breast cancer in the UK is 36,000. Without the right data on diagnosis rates, how can the most appropriate plans be made to care for and support people like me? How can the Cancer Drugs Fund decide what drugs can be allocated to extend life if the data isn’t there?

Treatment for early breast cancer gets the spotlight in this country. Secondary breast cancer is second as a priority but that needs to change for the estimated 36,000 people living with the disease. For us breast cancer is no longer about our breasts – it’s life and death. Every day we lose mothers, sisters, daughters, husbands, brothers, fathers to breast cancer.

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