Living with metastatic breast cancer

Andrea was 49, had three children aged 9, 12 and 14 and was only a few months away from submitting her PhD in public health, when she was diagnosed with de novo metastatic breast cancer.

‘This means the breast cancer was metastatic from the start. I went from thinking, this is okay, breast cancer is survivable, to feeling crushed when I found out the cancer had already spread to my liver and bones,’ she says.

Given the huge amount of research and awareness of breast cancer, Andrea was ‘gobsmacked’ at the lack of support she had access to compared to what was available for people with an early diagnosis.

She recalls asking her treating hospital if she could attend an information session about the side effects of treatments, such as hair loss.

‘I was told it was not appropriate for me to go,’ she says. ‘They thought having someone with metastatic breast cancer attend would be too confronting for those with an early diagnosis. I felt like I was invisible, that my experience and needs didn’t count.’

This is one of several examples Andrea shares of feeling excluded because of her diagnosis.

‘I think people with metastatic breast cancer have been viewed as a very different and sometimes difficult group, and therefore kept separate rather than welcomed,’ she says.

Since her diagnosis five years ago, the boundaries between Andrea’s personal and professional lives have blurred. She is involved in research projects about the role and value of metastatic breast care nurses, and the supportive care needs of people living with advanced breast cancer. Andrea is a trained consumer representative of BCNA’s Seat at the Table Program, was recently appointed chair of BCNA’s Metastatic Breast Cancer Advisory Group and is also a newly appointed board member of the ABC Global Alliance, which aims to improve and extend the lives of women and men living with advanced breast cancer across the world. BCNA’s CEO Kirsten Pilatti also sits on the Global Alliance board.

Andrea has become increasingly determined to see changes in the way people with metastatic breast cancer are treated and understood, by both the health system and the general community.

‘Breast cancer advocacy has made incredible progress in many ways, but it hasn’t benefited all patients equally,’ Andrea says. ‘There are still so many gaps in the care and understanding of metastatic breast cancer.’

She wants to see people living with an advanced diagnosis provided with better access to specialised metastatic breast care nurses and professionally led support groups.

‘Things have changed, mainly driven by better treatments extending lifespans. I know people who are alive 10 or 15 years later. There is a greater proportion of us living long enough to ask questions about why valuable services aren’t available for us,’ she says.

Andrea acknowledges that living with advanced breast cancer is incredibly challenging.

‘My horizons have become more limited. I have always been motivated and goal-oriented, but now I only think in one-to two-year timeframes. Sometimes I find the uncertainty around my diagnosis almost crippling, especially when I’ve had disease relapse. I also have what I like to call mother’s guilt on steroids – torn between wanting to spend more time with my children but also wanting to achieve so much professionally.’

Andrea has supportive family and friends, and has accessed professional help when she felt she was not coping. She has also found connecting with other people who have metastatic breast cancer invaluable, as well as resources such as BCNA’s My Journey metastatic content which includes information on treatment, progression, living well with metastatic breast cancer and stories from other women going through a metastatic diagnosis.

‘I’m pleased to see BCNA is providing more information and support for people with metastatic breast cancer, such as podcasts, webinars and conferences that encourage people to talk about the issues they’re facing,’ she says.

Andrea worries about how much time she has left and about how long everything takes in research, but she is also comforted by advances in treatment.

‘We all need hope. Even with metastatic diagnoses, there is hope. We have multiple lines of treatment and new treatments are coming through all the time. There is still life with progression, and we can have a good quality of life,’ she says.

My Journey articles:

Issue 88
Winter 2021