The news of facing terminal breast cancer hit Andrea Smith hard. More challenging was the shocking realization of the lack of adequate support services available for patients like her. At the age of 49, she had been experiencing persistent symptoms such as exhaustion and pain within her ribs, spine, and hips. The heaviness she felt radiated through her breast, leading her general practitioner to suspect menopause might be the cause.
Following thorough examinations, including mammograms and ultrasounds, the results revealed she had cancer. Just ten days later, she received the heart-wrenching news: the disease had already progressed to her bones and liver. "It's like dropping off a cliff," Andrea recalled, reflecting on the life-altering moment. While grappling with her diagnosis, she also felt the weight of disappointment as a mother, fearing she wouldn’t be present to witness her children's milestones.
Before her diagnosis, Andrea believed breast cancer support services were among the best. But she was astounded to discover support for individuals with terminal conditions was scant. Access to the hospital's breast cancer nurses was denied after she expressed interest in attending support groups meant for patients without life-limiting diagnoses. "I wanted to find out about how to deal with the side effects of chemotherapy, how to deal with hair loss, how to talk to my kids, how to maximize my diet and exercise for quality of life," she reflected.
Luckily, her hospital offered some solace with the existence of a metastatic breast cancer support group. Although she found some answers there, Andrea was still left with the unsettling realization of the challenges women at this stage of cancer face. While infrastructure has improved slightly over time—an incremental addition of just one part-time metastatic breast cancer nurse four months post-diagnosis—this is insufficient.
A year has now passed, and she is still advocating for necessary changes. Her dedication is driving her efforts, and she is hopeful following the recent establishment of Metastatic Breast Cancer Action Australia. Incorporated through the collaborative efforts of chronic disease patients and healthcare professionals, this advocacy group aims to collect comprehensive data on metastatic breast cancer patient populations and push for the creation of specialized health services. Andrea believes it's time to officially recognize the significant hurdles patients face.
The Cancer Institute of New South Wales estimates around 24,000 Australians currently live with metastatic breast cancer. Nevertheless, Andrea insists this is only rough data calculated from existing figures and needs to be updated. Traditionally, metastatic patients had low life expectancies, averaging around 18-24 months up until about two decades ago. New treatments are extending the lives of patients, necessitating the expansion of services to cater to their needs.
Years later and nearly nine since her diagnosis, Andrea finds herself contemplating her future hour by hour, unsure of her next disease progression's timing. "I live with a 12-month horizon," she said. Andrea wrestles with the uncertainty of whether the medications she depends on may cease to be effective or if other options will become unavailable if her health declines—an anxiety mingled with the struggle to care for her family amid her condition.
For those seeking to connect or learn more, feel free to visit their website at www.mbcaction.com.au.
