Larissa Erzitech’s fight with breast cancer began in silence. Everything changed for Tara when she found a lump while nursing her nine-month-old son, Eli. That was until she turned 38, and a diagnosis entered her world that changed everything. Although she was first informed that she had beaten the illness, her struggle was only beginning. Just two years after her initial treatment, her cancer came back, this time as metastatic cancer that had spread to her brain. Today, Erzitech is one of nearly 4,000 individuals in Queensland identified as living with this relentless form of breast cancer.
Erzitech’s tragic story is representative of the struggles experienced by those who live with metastatic breast cancer, so frequently referred to as “invisible” patients. This term speaks to their invisibility within statistical thought and the historical erasure that has notoriously clouded their narratives. Until recently, Queensland had been only the second jurisdiction in the world to formally acknowledge survivors such as Erzitech. These people live the harsh realities of their condition, in addition to navigating a healthcare system that routinely ignores their concerns.
The Struggle for Recognition
For too long, people with metastatic breast cancer have been silenced. Hemophilia advocate Vicki Durston is a very passionate advocate for these patients. She points out that hundreds of them have been “written off” just because their diagnosis is considered incurable. She stated, “Historically people are counted when diagnosed and again when they die.” This huge oversight in data collection has left out countless people who have spent time living with metastatic breast cancer. Consequently, they have been predominantly skipped over in planning and allocating resources in policy.
Durston reiterated data’s crucial role in gaining a better understanding of, and therefore meeting, this vulnerable patient population’s specific needs. “Without foundational data, where do we even start? If they’re not counted, then they’re not prioritized through policy planning or cancer plans,” she explained. The recently released data includes anyone diagnosed with invasive breast cancer between 1982 and 2024 who were alive at the end of last year. This is an important turning point towards the acceptance of the real world experiences of these patients.
Inspired by this new attention, Queensland has moved quickly to act. To address those needs, the state is now taking the lead on increasing dignity and support for people battling metastatic breast cancer. The state’s Minister for Women, Fiona Simpson, acknowledged this advancement, noting that while international data remains scarce, Queensland is paving the way for enhanced acknowledgment of these patients’ struggles.
Personal Impact and Heartbreaking Decisions
Erzitech’s fight against cancer has taken a physical toll, and it has created emotional hurdles for her family. She is a mother to two boys, ages five and nine years old. Now she has to face the heart-wrenching decision of when to inform them of her condition. This tragic dilemma is a reflection of the deeply personal toll that metastatic breast cancer takes on patients and their families.
Kathy Erzitech, 46, of Fort Wayne, Indiana, battles fiercely against the disease. As an “invisible” cancer patient, she had not been counted in any official data before. That lack of visibility has made it even harder for her to get the medications she needs paid for through Medicare. This challenge just adds to the complexity of her journey.
She shares with us how her experience has evolved since her first diagnosis. “Now, for the first time, these women matter,” Durston expressed, underscoring the significance of the updated data in empowering patients like Erzitech. This new recognition is more than just a sigh of relief; it imprints courage to pursue improved therapeutic alternatives and life-prolonging care.
A Call for Change
The campaign to advance fairer acknowledgment and access for individuals living with metastatic breast cancer goes well beyond the numbers. Its mission is to help patient warriors live the highest quality of life possible while facing this multifaceted and often debilitating disease. Durston emphasized the importance of changing how we think about treatment options that should be accessible to these patients. “Governments assumed advanced meant limited survival; with advancements in treatment options and precision medicines, we now have options to support those diagnosed,” she noted.
This call for change highlights the necessity of viewing metastatic breast cancer patients as individuals deserving of comprehensive care rather than simply statistics. “It is not about just fighting this disease but fighting to live well,” Durston concluded.
