one in eight: leader of rethink breast cancer weighs in on canadian approach to care

oct. 31 may mark the end of breast cancer awareness month, but the condition itself will continue to have an oversized impact on the lives of canadians across the country.

in 2022, the canadian cancer society estimates breast cancer diagnoses will make up 25 per cent of all new cancer cases in women, with 28,600 women receiving the diagnosis. a further 5,500 women will die from breast cancer this year — making up 14 per cent of all female cancer deaths. over a lifetime, one in eight women will receive a breast cancer diagnosis, and one in 34 will die from the cancer.

breast cancer is also not exclusive to women. an estimated 270 men will be diagnosed with breast cancer this year in canada, and 55 men are expected to pass away from the illness.

while making strides in improving care, federal and provincial approaches to breast cancer prevention and treatment has attracted some criticism over the past few years. this includes questionable changes to breast cancer screening guidelines and issues with patients receiving timely access to cutting-edge treatments.    

to get a better understanding of breast cancer care in canada, healthing reached out mj decoteau, founder and executive director of rethink breast cancer, to discuss where we are now and how we move forward.

i just back from the world cancer congress and the stories i heard from fellow advocates and leaders from cancer organizations in developing countries were just devastating and heartbreaking. so, my privilege in living in a country like canada is top of mind as i ponder this question.

i would say, in many ways, canada is doing very well in cancer care. that said, having worked in this field for two decades, i have seen the gap between canada and the u.s. — and between canada and many parts of europe — widen in terms of access to new innovative cancer treatments. it worries me.    

screening for breast cancer is an important part of the continuum of care and, at times, can seem to overshadow the treatment and supportive care that are critical in improving patients’ outcomes. screening programs are a public health intervention for a healthy population — they are good for detecting the easiest-to-treat, early-stage breast cancers. however, screening programs are not effective at detecting the fast-growing, aggressive tumours, which are what many young people with breast cancer are diagnosed with.    

at what age a person should begin breast cancer screening is hotly debated. we advocate for the best available evidence to guide any potential changes to breast screening guidelines. rethink is supportive of an approach to breast screening that focuses on an individual’s risk assessment and the corresponding risk stratification in breast cancer screening.    

if you have a relevant genetic mutation or family history of breast cancer, speak to your primary care practitioner — you may qualify for a high-risk screening program or be referred for earlier screening.

we are also genuinely concerned that there are many individuals — especially black, indigenous and people of colour, as well as people living with low-income and rural-remote populations — who absolutely would benefit from accessing the current screening programs and who are not participating due to systemic socio-economic barriers, racism and lack of health equity.

many breast cancer patients feel overwhelmed by treatment decisions and isolated in their experience. if they are diagnosed at a young age, are metastatic or are black, indigenous or a person of colour, the isolation of a breast cancer diagnosis can be intensified.    

most people we are connected with at rethink are diagnosed at a younger age. when young people get breast cancer it can be more aggressive, which can lead to tougher treatments. many age-specific issues can also occur, such as fertility or family-planning challenges, diagnosis during pregnancy, childcare, impact on relationships, body image, dating and sexuality, feeling isolated from peers who don’t have cancer, career hiatuses, and financial insecurity. the physical and emotional toll that both diagnosis and treatment take on a young person’s life is devastating and traumatic. finally, the most aggressive subtypes of breast cancer, such as triple negative and her2-positive breast cancer, often occur in young people and have an elevated risk of recurrence or presentation as stage iv at diagnosis. rethink works very closely with these patients, supporting and advocating for those with metastatic breast cancer.    

processing this reality of a life-limiting diagnosis, like metastatic breast cancer, is extremely difficult — especially for the young patients in our community. the emotional impacts on quality of life are intense. many develop brain metastasis, which is difficult to treat and has a heavy symptom burden with both physical impacts and often changes in mood, personality and thinking. these cognitive and psychosocial challenges negatively impact the patients and their caregivers, who often must take on an overwhelming number of responsibilities.   

caregivers are such a crucial part of the breast cancer community and are not talked about enough. they often carry a lot of stress and anxiety but internalize it to protect their loved one with cancer and because they don’t want to centre the process on themselves. we see how much those in our community with breast cancer rely on and are grateful for their loved ones who are there to help with logistics and provide much needed love, care and support. caregivers need support too.

systemic change is slow, complex work and it takes many voices calling for the same change for it to happen. with rethink’s big reach and strong engagement of advocates, we have several advocacy wins under our belts.

one of the most rewarding, but also hardest parts of my job, is that we are an exceedingly small team working very closely on the ground with the community. we know their cancer stories and their personal stories, at least partly. we see their family pictures on facebook and instagram. we know what they have at stake. we know the feeling we get when we see their updates about being 2 years cancer free or 5 years cancer free. and we know how we feel when those living with metastatic disease, who are living scan to scan, post optimistically about their stability or, heartbreakingly, cancer progression.    

emotionally, the hardest part is when people i know in the community share news of having a recurrence or a change in their health status or when they pass away. i see and feel the impact this loss has on their loved ones and on the rest of the community. one of the gut-wrenching parts of my job is taking a call from someone who is truly desperate to access a new treatment that i know would make such a difference in their outcome, but is currently going through one of the stages of our approval and evaluation system. often, these patients do not have the months it takes for these treatments to be approved. these types of calls have been happening more than ever over the past two years as so many game-changing new treatments have been making their way to our canadian system.    

it has been exciting to see the data coming out of major oncology conferences and know these treatments will transform lives soon, but my heart breaks for those who need the treatments now. we need patients’ access to new treatments to catch up to the innovation. truthfully, i think for canada to stay at the forefront of cancer care we need new thinking around the ways we get new, effective medications to cancer patients — the old way is no longer working.   

canadian health systems need to adapt quickly to catch up to the current care and treatment backlog caused by the pandemic, while preparing our country for more cancer as our population grows older. our healthcare system is so stretched and the burnout among nurses, physicians and mental health professionals is a truly urgent situation.    

i hope that ai and machine learning will enable even more precise screening programs, diagnostics and precision cancer care.

i hope that cancer outcomes are much less affected by socio-economic factors than they are now.    

i hope that those working within individual aspects of the cancer care ecosystem will truly understand that it is an ecosystem, and that all parts need to be prioritized and work together for outcomes to continue to improve.

i hope that industry and government bodies will have worked out creative, innovative solutions to tackle the key issues causing delays in patient access to new cancer treatments.

i hope our entire cancer care system is more resilient than it currently is.

i hope that we will all know far fewer people diagnosed with cancer and far fewer people dying of cancer.    

emma jones is a multimedia editor with healthing. you can reach her at  emjones@postmedia.com   or on instagram and twitter  @jonesyjourn .

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one in eight: leader of rethink breast cancer weighs in on canadian approach to care

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