As breast cancer patients, we need to speak and we need to be heard

In 2012, Anna was diagnosed with a grade 3, triple positive tumour that had spread to two lymph nodes. Since then, Anna has undergone chemotherapy, radiotherapy, a double mastectomy and reconstruction. In 2017, her breast cancer was found to have spread and seed new tumours, becoming secondary breast cancer, the incurable form of the disease.

Finding my voice

When you are diagnosed and treated for breast cancer it can feel as if you have lost your voice and, with that, you lose some sense of control. You are in the hands of the medical experts and do whatever is needed and whatever you are asked to make this thing go away - that’s all that matters at that time. But all the treatment and the research is ultimately about us, the patients, and so it is incredibly important that we speak up and have our voices heard.

I first started working with Breast Cancer Now in 2014 as a Patient Advocate in the Service Pledge Programme, which works with patients and hospitals to find ways to improve patient experience of care. I had just finished my treatment for primary breast cancer – chemotherapy, radiotherapy and Herceptin – and was wanting to find a way to make something positive come out of something largely negative when I saw the ad to apply on Facebook.

Having studied Psychology, I also saw this as a way to utilise some of my training, especially in being objective but empathetic. By working with other patients through the Service Pledge I was able to bring their voices to the medical teams so that patient experience of care could be improved. Little did I know just how humbling and yet empowering that work would be – being the voice for all the patients I spoke to (at several different hospitals across the country) also gave me my voice back.

Getting to the cutting edge

Next, I became a member of Breast Cancer Voices, which means I may be asked for insight on specific campaigns, or to take part in relevant questionnaires and studies, or be given opportunities to tell people about my experience with breast cancer. It was through Voices that I was invited to speak to biomedical engineers at Imperial College about the breast cancer-related surgeries I have had. To be in the heart of an exciting and vibrant research group, and to see the technology that is coming out of it, was a fantastic experience.

In addition, Breast Cancer Voices 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 have also studied Biochemistry, this seemed an ideal fit for me. 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 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.

It’s a life-saver

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 Herceptin every three weeks for as long as it keeps working – which it thankfully is as I am currently in remission – or until research such as that supported by Breast Cancer Now finds an even more effective treatment.

Having secondary breast cancer means that time is of the essence. I am lucky in that my cancer is HER2 and oestrogen positive and therefore I can have Herceptin and aromatase inhibitors. However, I had an adverse reaction to the other HER2 positive drug, pertuzamab, currently leaving only Kadcyla in my arsenal if Herceptin should stop working. So my plan is to stay alive long enough until more drugs or therapies become available to increase my options and to mute my mets (metastatic breast cancer) at the very least! And it’s only through research such as that funded by Breast Cancer Now that those options, and more, may be just around the corner.

Being involved in some level at the forefront of that kind of research is, for me, not just a privilege but a life-saver on every level.