Through the Looking Glass – The Challenge with Metastatic Breast Cancer Statistics
A couple weeks back, Rethink shared a post titled ‘Breast Cancer Statistics in Canada’. This post – meant to inform the public about what progress has been made over the last several years – drew some criticism within the Metastatic Breast Cancer (MBC) community. It felt lacking.
Much of the information that was shared used conclusions based on short-term data (often 5 years). When that happens, a skewed image results due to a phenomenon known as ‘lead time bias’, whereby conclusions have been distorted due to the prevalence of early detection screening. Microscopic abnormalities are detected, treated and thus statistically included, but for some, have zero impact on the individual’s overall lifespan. Why? This abnormality was never lethal to the host in the first place, and/or the early finding didn’t prevent metastases from occurring.
How do we know this? Because while 5-year survival rates have improved over time, the 10 and 20-year observations show very little progress in survival statistics. The problem with short-range observations is that the data is not so much inaccurate as it is misleading; recurrence and metastases rates do not plateau at 5 years for the most common types of breast cancer; in fact, for some biomarkers, it actually increases with time. And this is wherein the previous post was lacking in explanation.
So why do we in the MBC community need you to recognize this distinction? Because the fight for better treatment options, better processes and the demand for longer survival rates is ongoing. The urgency to demand better for this terminal illness is as present as ever. The watered down, palatable ‘we are winning’ message does a disservice to our community. And while the community of MBC voices is growing, those of us living with MBC can’t create this change on our own. Not between life and treatment and scans and progression. Because time passes and someone dies. And that someone’s efforts are shelved because of grief and sadness and life taking over.
And then we start again.
The MBC community needs allies. We need family and friends and oncologists and politicians to help us create change. We need you, dear early stager, who rang that bell despite the gnawing feeling in the pit of your belly that this ‘journey’ was not over yet. We need you, who knows that friend or aunt or colleague who recurred after 5 years, who read that article about that celebrity who recurred after 2 decades, who knows that there is more to this story than pink balloons and smiles all around.
We need allies who are willing to act. A call to elected officials to change the bureaucracy that leads to inexcusable delays in treatment options (I see you, pCODR). A demand of our cancer associations/societies/research facilities to do better with the funds entrusted to them. A helping hand to someone doing the best they can with this demanding illness. A rise to action when requested.
Sometimes you need a longer lens to capture the details. And it is within the details that you will find the bigger picture. You will find me – us – there. We need you to see us. – Vesna Zic-Côté
Vesna Zic-Côté is a member of Rethink’s Metastatic Breast Cancer Advisory Board. Initially diagnosed with breast cancer in 2012, Vesna is now in active treatment for Metastatic Breast Cancer (MBC) since early 2017.