Stories about cancer are often heavy on fear and light on hope. Breast cancer is almost unique in how powerfully its community has shifted the conversation around the disease toward positivity. We must not forget, however, that breast cancer remains deadly.

In Canada, about 25,000 women (and a few men) are diagnosed with breast cancer every year. The good news is that more and more breast cancers are being detected early, and a great many who receive the diagnosis will respond well to treatment and become survivors. “We now understand breast cancer better and are detecting it earlier and treating it more effectively,” says Dr. Christine Brezden-Masley, Head of the Oncology Clinical Research Group at St. Michael’s Hospital in Toronto. “Because of this, even though our incidence of breast cancer has increased over time, the mortality rate has decreased.”

The bad news is that, with the survival narrative receiving so much attention, less light is being shone on those who most need help and support: women with late stage metastatic breast cancer. “The shock of a metastatic diagnosis is overwhelming,” says Julie, a metastatic patient advocate with the Canadian Breast Cancer Network (CBCN). “Everyone is aware of what breast cancer is, but when we talk about metastatic disease, it’s quite difficult to find information and support. I wish that more people were aware of this issue and knew that there are groups out there that are willing and able to help.”

The other kind of breast cancer

Metastatic breast cancer is cancer that has spread from the breasts to other parts of the body, and it is incurable. Most women will live less than five years after their diagnosis. It accounts for 5 to 10 percent of new breast cancer diagnoses, and those with early stage breast cancer are at a 20 to 30 percent risk of eventually developing it. That means that thousands of Canadian women are dealing with this devastating diagnosis every year. “Many of these women go from thinking they’ve got one of the ‘good cancers’ to the shock of learning that they’re metastatic,” says MJ DeCoteau, Executive Director of Rethink Breast Cancer. “Metastatic women we work with are often very young. Now they are trying to condense everything they thought they would get out of their lives into a very short span of time.”

This adjustment is naturally virtually impossible to make, and is made even harder as patients often feel they are not getting the support they need from the breast cancer community. “We need to continue to expand the breast cancer conversation to include women with metastatic breast cancer,” says DeCoteau. “These are the women who are basically given a life sentence. Their disease is terminal and they are trying to figure out how to live with it.”

Treatment just out of reach

For metastatic women, one of the greatest challenges can be successfully navigating the ever more complex treatment landscape. To help with this, CBCN recently launched a new navigational tool called MedSearch, which enables patients and their caregivers to find credible information on therapies. “When you have breast cancer, it’s important to understand your treatment options,” says Laurie Kingston, a metastatic breast cancer patient and board member of CBCN. “If breast cancer is metastatic, this understanding becomes absolutely critical. I appreciate specific, concrete information that can help me to discuss treatment options with my oncologist.”

This sort of information is becoming increasingly vital as concern about timely access to new treatments grows. Although it’s an exciting time in the field of breast cancer research, with many new treatments at various stages of development and approval, these treatments are not being made accessible as quickly as patients want and need. “We understand the molecular biology of metastatic breast cancer much better these days,” says Dr. Brezden-Masley. “There are new drugs in the pipeline that are showing effectiveness, but approval is a long and complicated process. Cost is the biggest roadblock for many of these treatments. We try to treat all of our patients effectively in Canada, so we must wait for clinical trial evidence of survival benefits and safety to come forward before we make funding decisions.”

The result is that metastatic patients aren’t getting timely access to the innovative cancer treatments that could extend their lives by years and greatly improve their quality of life. Tools like MedSearch, which also provides information on treatments in the works, are a big help, but increased advocacy is also essential.

“It’s the metastatic patients who are most invested in the advocacy issues around access to treatment, yet as their disease progresses, it can become difficult for them to participate in advocacy,” says DeCoteau. “They don’t have time to wait for treatments to become available to them. They have timelines and goals. And often their goals are things like just wanting to see their child go to her first day of school.”

Time is not on our side

As our scientific understanding of breast cancer grows and research moves forward in new and exciting directions, timely access and reliable information are growing ever more essential for metastatic breast cancer patients. Between chemotherapy and newer targeted therapies, patients and caregivers have a lot to digest when it comes to determining the treatment plan that will give them the most time and the best quality of life.

For metastatic breast cancer patients, time is everything. Additional support and advocacy from the community at large are needed today, not tomorrow. These women are living on the clock, and we must not forget them, especially while they are still here with us.

This article was made possible with support from Pfizer Canada Inc.