more needs to be done for metastatic breast cancer patients, says cancer advocacy group

in 2015, after giving birth to her second child, lise bérubé noticed redness and swelling in her breast. after undergoing tests, she was shocked to receive a diagnosis of stage-3, her2-positive breast cancer. “it had never been on my radar that i would have cancer. i was young, healthy and had no family history of breast cancer,” bérubé says. “we knew from the beginning that it was quite advanced, but i was optimistic that i could get through it and recover.”  

after rounds of chemotherapy, radiation and surgery, the 34-year-old mother of two thought she was through the worst of it. three years later, bérubé was told the cancer had returned and this time it had spread, metastasizing to her lungs, pericardium and brain. “a stage-4 diagnosis was a whole other ball game,” she says. “it was much harder to come to terms with it because not only did i think breast cancer was behind me, but this new diagnosis meant being in treatment for the rest of my life. it was, and still is, incredibly scary.”   

not only is her2-positive breast cancer more aggressive and more likely to spread than her2-negative breast cancer, but it is also more likely to recur after treatment. like bérubé, about half of her2-positive metastatic breast cancer patients will see their cancer spread to the brain (called brain metastases) which significantly worsens their prognosis. 

despite the new diagnosis, bérubé is determined not to let her diagnosis define her; only days after the first brain tumour was discovered, she started training to run a marathon. “i thought, ‘i am not going to let this destroy me, i’m not giving in and can take this on.’”  

her2-positive breast cancer represents about 20 per cent of all breast cancers, says cathy ammendolea, chair of the board of directors at canadian breast cancer network, a national health charity based in ottawa. according to ammendolea, this type of cancer is particularly aggressive, as the tumours have high levels of a protein called human epidermal growth factor receptor 2 (her2) that promotes the growth of cancer cells.   

bérubé is determined not to let her diagnosis define her: “i can still be a mom, an employee, a friend and a partner.” credit: chad hipolito

while there has been tremendous progress in breast cancer research over the years, much of it has been focused on early-stage cancers. ammendolea and many other advocates feel more needs to be done for metastatic patients. “when you are facing advanced or metastatic cancer, particularly when the cancer has spread to the brain, you have far fewer treatment options.”  

ongoing research and development are especially critical given many of those diagnosed with metastatic her2-positive breast cancer tend to be younger, still involved in caregiving and have full, active lives, ammendolea notes. “there is an emotional and physical toll that can be overwhelming.”  

there can also be a financial burden for families, she notes. “in addition to time needed away from work, and for many the cost of travelling to appointments, metastatic patients often have to go through a variety of therapies throughout their journey, not all of which are covered through public or private programs. about 20 per cent of women can’t afford the costs of treatment and care options not available within the system,” says ammendolea. “access to the best care and therapies makes a difference in both their survival and quality of life.”  

patients with metastatic or advanced cancers often require a variety of treatments and/or procedures during their lifetime. since her stage-4 diagnosis, bérubé has undergone a pericardiocentesis, several rounds of stereotactic brain radiosurgery, a craniotomy, and frequent blood work, mris and ct scans. she has also been diligent in following her treatment regimen of targeted therapies, chemotherapy and surgeries. she considers herself lucky in that she has been able to access the care she needs and manage her appointments, while still working part-time and taking care of her young children. “i am grateful to be able to maintain a good quality of life and live a fairly normal, productive life.” she is also keenly aware that others are not so lucky.  

“with metastatic breast cancer, you are in treatment for the rest of your life, and that often requires spending several hours every week in appointments and clinics. it’s not easy.” 

“ideally, i would love to see more funding, research and supports for metastatic cancers in general. only a small portion of funding goes to this area compared to earlier-stage cancers. with metastatic breast cancer you are in treatment for the rest of your life, and that often requires spending several hours every week in appointments and clinics. it’s not easy.”  

that is why bérubé believes canadians with metastatic breast cancer should inform themselves as much as possible. “unfortunately, you often have to advocate for yourself to get the care you need. i want the metastatic breast cancer community to remember that we can be an active partner in our care. we have a say in our journey.”   

and they do not have to be defined by their cancer diagnosis. “yes, i have her2-positive, stage-4, metastatic breast cancer,” she continues, “but it’s not the way i introduce myself to people. i can still be a mom, an employee, a friend and a partner.” bérubé says, “so much changes when you are diagnosed with metastatic breast cancer, it is important to focus on what you can control and make time for things that bring you joy.”