make the most: essential support and resources for metastatic breast cancer patients
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michelle audoin, left, aims to shine a spotlight on the underrepresented bipoc community with metastatic breast cancer. dr. muna al-khaifi, right, works to help patients find more information and resources to manage their mbc condition.
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a new online hub aiming to fill the gaps in access to care resources for those living with metastatic breast cancer was recently launched, giving people in the breast cancer community another place to turn to after being diagnosed.
the hub, suitably named “make the most,” is geared towards encouraging people living with mbc and their loved ones to make the most of their diagnosis through education, empowerment, community sharing, and available resources to improve proactive and informed conversations with care teams and overall quality of life.
the site, created by novartis pharmaceuticals canada inc. in partnership with breast cancer canada, the canadian breast cancer network, and the quebec breast cancer foundation, has called on the community and mbc advocates to create the hub so that it benefits those living with the incurable disease.
michelle audoin, a mother, teacher, and hobby baker and gardener, was diagnosed with mbc seven years ago. today, michelle participates in the “make the most” community by sharing her story because when she was first diagnosed, representation of bipoc individuals living with mbc was nonexistent.
“as a black woman navigating the cancer care landscape, it was challenging because when i had surgery, i had specific questions about reconstruction and scarring,” she said. “and those images of people who looked like me didn’t exist.”
the “make the most” campaign aims to bridge those gaps in care, especially for underrepresented communities, by bringing people together.
the reality of metastatic breast cancer
metastatic breast cancer, or mbc, is advanced or stage iv breast cancer. this type starts in the breast and spreads (metastasizes) to other areas of the body, causing systemic disease. there is no cure for mbc, and newer treatments aim to improve a person’s quality of life while extending their lifespans following diagnosis.
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breast cancer is the second-most common cause of death by cancer in women. when a person is diagnosed with mbc, they have limited options in terms of survival. that said, women can live much longer with mbc than ever before.
research shows that the median number of years a person will survive with mbc is roughly two years. however, some women, such as michelle, can live five years or more.
after her diagnosis, michelle was left to grapple, relatively alone, with the tough questions that often come after being diagnosed with an incurable cancer.
“it is really hard to say that to your young family, and then just have all of these questions of like, ‘what is my life going to look like, how much time do i have with them, what are my treatment options,’” she said.
dr. muna al-khaifi, physician-lead with the breast cancer survivorship program at sunnybrook health sciences and assistant professor at the university of toronto, cares for people living with breast cancer. she sees just how difficult a diagnosis of mbc can be and the challenges faced by people after they hear the news.
“it’s a very challenging diagnosis for patients to hear. there’s a lot of emotions there. some patients will feel frustrated sometimes, angry, sad, hopeless,” she said. “but it’s not always the case. when i give this bad news to patients, i always tell them that things have changed. although metastatic breast cancer (mbc) is unlikely to be cured, meaningful improvements in survival have been seen with the introduction of newer systemic therapies. the survival for mbc varies widely based on the subtype of tumour, sites of metastatic involvement, response to treatment, and burden of metastatic disease, and we know that some patients can live for many years after diagnosis of mbc.”
putting the spotlight on an underrecognized disease and its challenges
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according to dr. al-khaifi, one issue that people living with mbc face is a lack of information or resources because these types of cancers get less attention in the mainstream.
because of this, accessing support and resources is so much more difficult because they do not generally know where to turn when they first get diagnosed.
“although the primary goals of systemic treatment for mbc are prolongation of survival and alleviation of symptoms, there is not much attention on supportive care and having high-quality care, high-quality life, even with having this diagnosis,” she said. “metastatic breast cancer is incurable, but that does not mean that they cannot live a high-quality life after this diagnosis.”
“we need to provide better education, better supportive care services because we don’t want to feel that this population, who has very unique challenges, are excluded from the other patient populations including the ones who have diagnosed with curable cancers.”
michelle experienced first-hand just how isolating it can feel when being diagnosed with mbc, especially because there was a lack of both representation and supporting resources geared toward her and other people in the bipoc community.
“(i had) all these intersecting identities and trying to find supports and services and not seeing myself represented where i was, it just added a different layer of challenges … feeling alone in this experience.”
addressing challenges by building a community
the “make the most” hub is designed to create a community to turn to for people living with or caring for those with mbc. while many may see breast cancer as all one thing, there are many different variations and types, as well as stages, all of which require different approaches and care resources.
“these populations have specific needs, specific challenges, and can be very diverse in terms of their treatment plan, their goals and treatment plan should be tailored accordingly,” said dr. al-khaifi.
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michelle acknowledges that the challenges people face, while similar, are not the same even if they have mbc because “metastatic breast cancer isn’t one type of cancer.”
“i can have metastatic breast cancer, and a friend can have the same type of breast cancer, but our bodies will respond differently,” michelle said.
the personal experience of living with mbc varies so significantly because of unique challenges and successes in treatment, coping, and support. that’s why the “make the most” hub is so vital for those diagnosed and living with mbc.
for michelle, having something like the “make the most” hub would have drastically changed her initial diagnosis experience.
“had i had access to the make the most checklist, it could have influenced some of the conversations i was having with my friends, with my care team. some of the questions i wanted to think about, i felt like there was a lot of stumbling and not knowing what to say, what to ask, how to have some of these difficult conversations, or even how to prioritize what mattered to me and not feel selfish,” she said. “all the content there would have been so invaluable when i was initially diagnosed.”
now that the “make the most” hub has launched and is live, people newly diagnosed with mbc will have an easier time navigating than others who came before them did, simply because there is now a safe place for them to go to learn about what they can do to improve their quality of life, how to speak to their care team and connect with others who are going through the same experience.
dr. al-khaifi, who has a lot of experience on the care team side of things, sees just how valuable the hub can be for those like michelle, who may fall through the cracks easier than those diagnosed with other forms of cancer.
“it can be very encouraging for women just hearing from others,” she said. “i feel this is a great opportunity for patients to just hear the different stories as well as get that sense of community. (having an incurable disease) does not mean that that’s the end of it or you cannot enjoy your life or live a fulfilling life, so it’s good for a sense of community and a sense of belonging.”
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how people with mbc can “make the most” of their diagnosis
for people living with mbc, it can be challenging to stay positive, but that’s precisely why the hub was created. people can access many different things and connect with others to forge a new and more hopeful path.
michelle is happy to be a part of “make the most” and hopes that the hub will help provide the resources and connections people need to stay positive in the face of incurable cancer.
“you get to see other people (and) hear a little bit about their lived experiences with metastatic breast cancer. the make the most checklist is there,” she said. “it can help inform you to have more personalized conversations with your care team and loved ones about things like the treatment journey … quality of life, and overall survival—some of these really big things that matter to people who are living with metastatic breast cancer and their loved ones who are supporting them.”
michelle has been living with mbc for three years shy of a decade, and in that time, she has learned plenty about the treatment journey, coping skills, and how a hub like “make the most” can make a real difference. she wants people living with mbc to remember one thing: an incurable cancer diagnosis does not have to ruin your life.
“people living with metastatic breast cancer can also live full and rewarding lives, and the more that we talk about it and share information and resources, points to consider, like your quality of life or the treatment journey—the more that we can share these things, the more we’re empowered to make the decisions to make the most of our time when living with this disease,” she said.
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