Sandy Sexton, patient advocate for METUPUK, is campaigning in Scotland on behalf of secondary/metastatic Breast Cancer patients. In October last year, after 18 months of debilitating back pain, Sandy was diagnosed with metastatic breast cancer. At diagnosis, the disease had already spread throughout her skeleton (this is known as a “de novo diagnosis). The cancer had weakened her bone structure and caused six vertebrae to collapse, meaning she lost more than four inches in height. Sandy continues to live with bone pain. She is supporting METUPUK and the promotion of our infographics for use in Scotland. NHS England has adopted them but they are not yet used in Scotland.
Sandy recently spoke to The Scotsman about her campaign work. “I would love to see the ‘red flag’ infographics adopted here. When I meet women who have got stage 1, 2 or 3 cancer, they talk about cure which is fabulous, but some of them will go on to become stage 4 which I have. They need to be aware of the ‘red flags’ in different parts of their body.” This would enable women to access the right treatment at the right time to give them a better chance of slowing the progression of the disease.
Around 30% of breast cancer patients will go on to develop metastatic, incurable, breast cancer. Patients aren’t routinely told about the risk of recurrence or given information on the signs and symptoms to look out for. GPs are also not always included in information for identifying red flag symptoms to detect and diagnose metastatic spread.
Sandy is also campaigning for Scotland to commit to a data audit of Metastatic Breast Cancer patients aligned with the much anticipated forthcoming cancer strategy. “I want us – women with metastatic breast cancer – to be counted when we are alive. At the moment, they only count us when we are dead. We’d quite like them to have accurate data about us when we’re alive!”
Sandy shared her story with Susan Dalgety who has a Saturday column in the Scotsman newspaper to raise awareness about metastatic breast cancer. On the day the article was published, Sandy’s husband felt compelled to write to Clare Adamson, their Member of Scottish Parliament calling for progress. Ms Adamson immediately took up the issue and wrote a letter to the Cabinet Secretary asking if the Scottish National Health Service will consider the benefits of the red flag infographics system and its possible adoption within the Scottish health service. Additionally, Ms Adamson suggested to the Cabinet Secretary that it would be beneficial to also know the numbers of people who are living with the condition as it would help inform the Scottish Government and NHS Scotland of the resources that are needed to manage and treat the condition and allow a comparison with what is currently expended on this treatment.
Sandy is very clear about her life at the moment “I’m definitely living. I’m not dying yet”, a sentiment shared by many women living with metastatic breast cancer.
Sandy is a member of METUPUK and patient advocate in Scotland.