In one respect, this article is a departure for me, but in another respect, it is a return. It is a return to the loss I experienced as a 19-year-old when my mother died of secondary breast cancer.
When Bylines Scotland’s editor-in-chief suggested, without knowing my history, that I write a piece on breast cancer for October breast cancer awareness month, I took a sharp intake of breath. Did I want to revisit this episode of my life? I accepted, but with a feeling of doubt whether I could do the subject and those with a diagnosis of secondary (metastatic) breast cancer justice, and whether I wanted to revisit this episode in my life. I doubted my own courage and honesty and whether my writing was up to the challenge.
It was suggested that I contact a charity specifically set up to support those with metastatic breast cancer and so, with some trepidation, I fired off an email to Make 2nds Count. Their founder, Lisa Fleming, whose own diagnoses inspired her to take action, very kindly found time, and agreed to an interview to talk about her experiences and some of the concerns that Make 2nds Count was founded to address.
Lisa was diagnosed at the age of 33. This is young for breast cancer full stop. But as another charity – CoppaFeel –can attest, this is a lesser-known aspect of breast cancer: that it can occur in younger people too. Diagnosis was also not a straightforward process. After finding a stretch mark on one breast and suffering back ache and loss of movement in one arm, Lisa still had to press hard for an investigation.
Surrounded but alone
The investigation led to a diagnosis of primary breast cancer and a full body scan. Forty-eight hours after her initial diagnosis, Lisa was told her primary breast cancer had metastasised and spread to her bones including her spine. The metastatic cancer had eaten through two vertebrae in her spine, causing the back ache she was experiencing. These were the symptoms that prompted Lisa to pursue an investigation and are the exact same symptoms my mother experienced.
“We don’t have stories of hope, we don’t have stories of remission.”
On the diagnosis of metastatic (secondary) cancer Lisa was told that it was terminal and that she had a life expectancy of two to three years. At the time, her son was three years old, so the diagnosis not only hit her own expectations of life, but also her expectations of motherhood. Her account of the mental impact of the diagnosis brings home the reality that care for those with a physical illness also requires mental health support.
Once diagnosed, Lisa was then faced with a dearth of up-to-date information and a support network. Lisa was confronted with healthcare professionals whose attitudes appeared defeatist. The aloneness of such a diagnosis is a stark reminder of not only how my own mother was treated but how we as a family were treated too.
“Behind this my body is in constant pain and I am fatigued, that doesn’t go. This is what is hard for secondary Breast Cancer patients, we don’t have that focus of remission, this is our lives.”
The fight to balance the disease with everyday life
Lisa is now five years down the line from her diagnosis and looks in her prime. She radiated vitality and determination down the video link to me. Lisa’s appearance belies the truth – that she is in constant pain and receives continuous treatment. There have been numerous surgeries, including spine, gynaecological and brain, after which she had to relearn to walk.
Lisa is currently stable, but lives with the knowledge that her body will become inured to her current treatment and another one will be required. The regular scans break her life into three-month cycles. It is extremely difficult to wrest back a semblance of autonomy from the disease and the medical treatment that dictates so much. This is especially acute when there is no remission as there is in primary cancer.
“A lot of patients feel and I do feel correctly that you are almost forgotten as a secondary [Breast Cancer] patient, it isn’t prioritised as [treatment] isn’t lifesaving.”
Despite being extremely ill with both the cancer and the chemotherapy, Lisa set up Make 2nds Count to address her frustration with the lack of accessible up-to-date information and to build a network to provide moral support. The charity has built up a network of mutual support for patients and their families. It provides a hub of up-to-date information for patients.
There is a patient trials advocacy support service to help patients access trial treatments and it is working to fund research into secondary breast cancer. Make 2nds Count assists recently diagnosed patients to find their individual pathway through the disease and its far-reaching implications. Every patient is individual and thus the emphasis is on tailored support and facilitation with advocacy provided where necessary.
“As a patient you just want what’s right for you but on a wider scale it is impossible to deliver this at the moment.”
Approval time for drugs can have an impact
Users of Make 2nds Count have found that the provision of medical care for secondary breast cancer patients is extremely challenging. Approaches to treatment are a postcode lottery with pockets of expertise, a spectrum of attitudes and approaches within the oncology specialism. Generally secondary breast cancer patients, despite having very specific requirements, are lumped in with primary breast cancer patients.
Lisa noted that many of the newer drugs are only available privately and the speed at which new drugs are approved directly impacts patients. These timescales are currently being challenged by professionals who have seen the speed at which Covid treatments were assessed and approved. To further complicate matters, metastatic cancer has a very high genetic variability and thus the most effective treatment for one patient may only be effective in a very small number of patients. This has huge cost implications for healthcare services.
Lisa’s experience demonstrates that diagnosis of secondary breast cancer is not straight forward either. The symptoms can be masked by other health issues. Sometimes the symptoms are quite subtle. But probably most markedly, symptoms are diverse and can easily be falsely attributed to other diseases.
Everyone has a right to ask about their symptoms
General Practitioners and first-line healthcare professionals are challenged by an ever-growing list of diseases and symptoms. However, they do use an information system that informs their diagnostic processes. Lisa’s view is that if this system was tailored with prompts that encompassed the wide variety of secondary breast cancer symptoms some diagnoses might be made faster.
Crucially everyone should be made aware of the symptoms, to know when their body is not feeling right. Everyone should feel empowered to query symptoms, whether of cancer or any other disease, with better knowledge and awareness.
“There are times that are very dark, there will be many more times that are really dark, but there are also times that are really enjoyable and I’ve made a lot of great memories, I plan on continuing to do this as long as I am well enough to do it.”
Support networks help life remain rich and full
When living with cancer it is important to realise that there is much more to life than either the cancer or the ensuing treatment. Lisa has found renewal in her work with Make 2nds Count. Part of this work encourages patients to explore life strategies that in reality everyone should be seeking. To value those we hold dear and to pursue a lifestyle that enriches us. Often, we are not good at finding the time and energy to explore and experiment, whether in good health or not. Holistic and complementary healthcare also features heavily in many patients’ strategies, though these should always be discussed with the medical team and oncologists.
Overall, if there is one message that comes from memories of my mother and Lisa’s experiences, it is that we should all be seeking out that which strengthens us. That we should all have access to support networks when we need them and be able to find good accurate information. And that, irrespective of health, life can be a rich and wonderful experience to be treasured.
We need your help! The press in the UK is dominated by billionaire-owned media, many offshore and avoiding paying tax. We are a citizen journalism publication but still have significant costs. If you believe in what we do, please consider subscribing to the Bylines Gazette 🙏