Eighteen months ago I was, unfortunately, re-diagnosed with breast cancer… but this time it is secondary and therefore incurable. So I have had more chemotherapy and will be on aromatase inhibitors and Herceptin (every three weeks) for as long as they keep working – which they thankfully are so far.
My cancer is currently incurable but it is not yet terminal.
Terminology can make all the difference to how people perceive you and how you perceive yourself. I have always found the ‘battling’ and ‘fighting’ terminology rather exhausting, plus it makes it seem the patient's fault if they ‘lose the battle’ - as if they didn't try hard enough to stay alive! But some people find it empowering and I think it’s important to find and use words that help you personally.
With my diagnosis, ‘stage 4’ made everyone think I was going to die imminently. To be honest I thought the same when I was given the diagnosis. Because there is no stage 5 and everyone knows it. It makes people do what I call the ‘bless face’ – it’s a look that all cancer patients will know and often comes with the words ‘bless you’ and a tilt of the head. People would see me as someone who needs help or pity. Or they’d ask me my prognosis i.e. ‘do you know when you’re going to die?’! Sympathy is great and very welcome, pity not so much.
But my cancer is not yet terminal. It is currently incurable and I accept that, but incurable gives a hint of the possibility that it might not get to the terminal - or at least not yet! Because people are living longer and longer with this disease and things can only get better as research such as that funded by Breast Cancer Now continues.
‘Metastatic’, meanwhile, is just too medical and no one knows how to say it or spell it let alone know what it means. For me, ‘secondary’ is more manageable, both mentally and in terms of how people view and react to me. It just doesn't sound so final and I am not treated as a lame duck (or not as much). So incurable secondary breast cancer is what I have!
Why should patients be involved in how we fund research?
I joined Breast Cancer Now’s Insight and Experience Panel as part of its pilot in 2016. This presented the opportunity to be a patient representative on the Science Strategy Committee (SSC) - a group of eminent and international scientists who oversee Breast Cancer Now’s research portfolio and its funding and advises the Board of Trustees accordingly. Since I also have a PhD in Biochemistry, this seemed an ideal fit for me so I was delighted when my application was accepted.
Through my work with the SSC I am at the cutting edge of breast cancer research and see at first hand just how amazing is the work that Breast Cancer Now does. I also get to glimpse where the future may be in prevention, diagnosis and treatment of breast cancer.
Working with the SSC brings that patient voice from the treatment programmes to the cutting edge of science. I think it’s invaluable to have a patient voice in this particular arena because sometimes scientists (and I speak as one!) can get so focussed on their area that they forget the wider picture - that they are working to help prevent people like me from dying. From my own point of view, it was exciting to hear what research was going on, the breadth of the topics, what was planned for the future and what had already made strides in scientific understanding.
I had worried that my opinion might not be entirely welcome or relevant but this seemed to be far from the case and I felt that my points were taken on board. My voice was heard. And it made a difference.
As someone living with secondary breast cancer, what kind of research is important to you?
My personal preference for research would be on treatments. I have my eye on immunotherapy - there was a well-publicised case in the States recently where a patient with my type of secondary cancer was given targeted immunotherapy and has been in ‘complete and durable remission’ for 2 years - that is where the future of cancer therapy seems to be heading. For those of us with secondary, all research other than that on treatments would be almost irrelevant.
As a scientist, I realise that we need the research at the micro level too because we need to understand the hows and whys to get to the cures. But as a patient rep for all breast cancer patients I want research into prevention - of getting a primary in the first place and, perhaps more realistically, of primary becoming secondary - and I want research on treatment.
Any other thoughts?
What I’d like to communicate to everyone is that there is life after a secondary diagnosis. It is possible to live, and live well. It is not ideal, I grant you, in fact it’s very scary at times and treatments can be (and have been) gruelling, but it is not an immediate death sentence either. I may have to do things in 3-week windows, but do things I will! So I travel to all sorts of places, I run races, I go to the theatre, I am about to do a cookery course and I have an in-door sky dive booked! And I have plenty of good times with friends and family. I know that at some point I may not be able to do all of these things, but for now I can. So please don’t give me the ‘bless face’!
The Science Strategy Committee was established to provide expert scientific advice directly to the Board of Trustees. Members include leading, international scientists and the SSC meets three times per annum. Find out more about Breast Cancer Now's Advisory committees.