On Breast Screening

May 31, 2024

The draft recommendations are out and Rethink is reflecting on them:

Rethink has always had a quite nuanced message about breast screening, and championed risk stratification and amplified health equity considerations as the opportunity to improve positive outcomes from screening programs.

Dear MBC community, we see you. 

Dear early-stage community in your 40s and younger, we see you too.

The breast screening dialogue has ramped up again with anger at the Canadian Task Force on Preventative Health Care and their newly released draft guidelines on breast cancer screening for people of average or moderately increased risk. 

Rethink could pile on, leveraging the click-baity media stories, confusion about screening vs diagnostic mammograms and the fear and emotion that anyone touched by breast cancer lives and breathes. We could easily capitalize on the momentum, increase social media clout, drive fundraising, and try to bank an advocacy win. But we won’t. Doing that doesn’t align with our values. 

We are committed to telling the more complete story of breast cancer. 

We are committed to evidence-based advocacy. 

We are committed to historically underserved breast cancer patients whose needs are not met by a one-size fits all approach. 

We are committed to ensuring those with the highest risk of breast cancer are prioritized for early and comprehensive screening.

We are committed to a sustainable cancer care system that offers the best outcomes for the collective breast cancer community. 

For our MBC community, we know many of you find the breast screening media headlines as triggering as a shiny, pink-washed breast cancer month marketing campaign. Not because you don’t think screening is important but because you’re frustrated by overly simplistic messages about early detection and cure in which the experiences of the MBC community are ignored. As one metastatic thriver shared, “Due diligence is ensuring advocacy around screening includes a balanced message that there is a lingering risk of recurrence even when screening and early detection is in place.”

And for our community members diagnosed at an early stage, we know many of you are liking and sharing the social media posts about screening starting at age 40, and some of you are stating it should start even lower. And we get it. Most of you are in your 30s and have had your lives turned upside down by the physical, practical, and emotional impacts of being diagnosed at a young age. You’re also in this community, seeing other young women sharing about recurrences and their metastatic experience. You don’t want anyone to go through what you’ve been through. You don’t want more young women dying of MBC. So, you may be wondering why Rethink, an organization you know and love for having your back, is largely hanging back on the current breast screening conversation. 

We want every breast cancer to be caught and treated early and for outcomes to continue to improve.

But if there’s one thing that working for over 20 years on the ground to improve outcomes for historically underserved breast cancer patients has shown us, it’s that one size does not fit all. We have seen the tremendous improvements in outcomes as treatments have become targeted, and we need a similar way of thinking when it comes to screening and detection.

Population-based breast screening is important, but mammography screening programs have had a more modest impact on breast cancer outcomes than most people assume. The impact is modest compared to the cost so that’s why it’s been so widely debated as an effective health intervention since its introduction. 

Moreover, sometimes the overpromises about its impact can lead to misunderstanding and a false sense of security for some people. We always encourage each individual knows their personal risk and advocates for themselves if they notice any change.

The current emphasis on expanding our status quo breast screening programs by age overshadows the issues of younger people with breast cancer, the metastatic breast cancer community and other historically underserved groups including people who are racialized, are immigrants or are impacted by other social determinants of health. What we know from our experience is that the popular narrative about breast screening lacks the nuances that are very important in understanding the whole breast cancer story. 

The best age to start mammography screening for average risk women has been debated since the 80s. That’s many years. And I feel like I’ve been working on this piece for years too. It’s long but because this issue is complex and sensitive, I found while writing that I needed more words. 

Here are some key points that weigh on us right now: 

• The decline in breast cancer mortality in the US has been similar (and at times even lower) in other high income European countries where population screening for those of average risk starts at 50. 

• Black women in the US where screening programs start at 40 have poorer breast cancer outcomes. Is this an access to screening issue? Biology? A bit of both? Black women have higher rates of triple negative breast cancer, which is more aggressive and a subtype more likely to appear between screenings. 

• Currently, there is no effective tool for screening women of average risk under age 40. Young women tend to have dense breast tissue that obscures the view of potentially cancerous growths shown on mammograms. 

• More women under 40 are being diagnosed, which is extremely concerning, and this needs to be addressed. But this won’t be solved with population-based screening. 

• Mammography screening programs are good for detecting the easiest to treat, early-stage breast cancers. Screening programs are not effective at detecting the fast-growing, aggressive tumours, which are what many young people are diagnosed with, and which are more likely to metastasize before they can be seen on a mammogram. 

• Screening mammograms, even combined with high-speed ultrasounds, can miss up to 20% of malignancies. This type of high error rate would be unacceptable in many other fields of medicine and research. Given that breast cancer rates are rising in young women and metastasises is largely incurable, this false-negative rate is concerning but given little attention. 

• At the individual level, it is callous to even consider what the number of screenings, false positives and biopsies are needed to save one life through screening programs. But from a systems perspective, from a health equity perspective, we wonder, who is deciding which lives are worth saving? 

• Canada lacks robust cancer data collection and reporting, which we see as inextricably linked to this issue. Without data about breast cancer recurrence, how can we evaluate the true effectiveness and impact of our public health interventions like breast screening programs? 

• Evidence is important in making informed decisions about breast cancer screening for people of average risk. The reality is that as new data is presented, it can be reviewed and interpretated differently, even among experts, which is difficult and makes this issue even more complex and challenging.  

It’s with this broader look at all the factors that play into detecting the most breast cancers earlier that we will be developing our feedback for the Task Force on the recently released draft recommendations.  

Desperate Need for New Data and Research – beyond small, observational studies

It has been over 25 years since the first national breast screening guidelines for people at average risk were released. In 2011, the suggested age for breast cancer screening changed from 40 to 50 for people at average risk. This was done coincidentally at the same time as the understanding and pathology for different breast cancer subtypes was rapidly improving, as was access to more targeted and effective treatments. In 2018, Canadian guidelines were updated to recommend people of average risk in their 40s who wanted to start screening before 50 engage in shared decision-making with their physician. We applauded this update of the individual’s values being incorporated into their decision but many women 40 to 49 who are of average risk still felt unrepresented or underrepresented in the current guidelines. 

Two years ago, we approached the Canadian Cancer Society about working together to explore the evidence since 2011. We were seeking a clear understanding of the effect of changes in breast screening age in people at average risk from 40 to 50 in 2011, alongside the changes in improved breast cancer pathology and treatment. We were even hoping to gather data comparing the subtype of breast cancer diagnosed by screening mammogram vs between screening (or outside of screening programs if younger and not in a high-risk screening program). And, given our passion for metastatic issues, we were even hoping to find a way to mine information about recurrences. In short, we believed before advocacy could begin, we needed better data. 

We had high hopes and excitement about the possibility of such a study, but it didn’t happen. Not yet anyway. Data sets are incomplete and feasibility is a challenge. There have been a few smaller studies. But we will keep pushing for this type of comprehensive research. 

Last month, the United States Preventive Services Task Force (USPSTF) changed their recommendation for women of average risk to receive a screening mammogram every second year starting at age 40 (their recommendation for age of average risk women to start screening has bounced from 40 to 50 back to 40 over the past couple decades).

We did see that Dr. Laura Esserman, an internationally recognized breast surgeon and breast oncology specialist, shared on X:

“The USPSTF guidelines have changed once again, and no new trails have prompted this change. The same data is being analyzed and re-analyzed. There is no ability to personalize screening based on risk for specific tumor types or customize prevention recommendations. We need new trials and data instead of the rehashing the same data.” 

Tracking policy change impacts

As we see from various announcements here in Canada, there is momentum towards lowering the breast screening age for people of average risk. False-negatives aside, this will undoubtedly lead to more false positives, more unnecessary biopsies and even at times overtreatment. While individuals are quick to declare they are not bothered by this, we worry about unintended negative consequences for the breast cancer community. 

Resources are not infinite, and this change may create delays in screening people who are at a higher risk of getting breast cancer, including slowing access for higher risk people in underserved communities. Moreover, backlogging our system with false positives may slow access to urgent diagnostic mammograms and biopsies, delaying access to treatment. Earlier this year, we were shocked and extremely concerned about Lindsay Rogers in Saskatchewan who waited months for a diagnostic mammogram after finding a lump in her breast due to a shortage of medical radiation technologists and specialized breast radiologists. 

There is an urgent need for increased data reporting, transparency, and accountability within provincial screening programs. We must ensure that as provincial programs, like the one in Ontario to remove the barrier of the GP referral for breast screening for people ages 40-49, captures detailed data on the impact of this change. And, we need to constantly re-evaluate the data and make sure programs are based on the evidence.

We know from health equity researchers, there are many women over 50 who aren’t accessing mammography screening programs due to system barriers and impacts of the social determinants of health. Our concern is that we may see the biggest uptake with white women of average risk. We will need to know (especially by racial identity) how many people end up with false positives and unnecessary biopsies thereby using resources that slow access for higher risk people in underserved communities. It’s so important that the data is captured when policy changes so that we can understand, and better yet, avoid unintended negative impacts.

With all this in mind, Rethink will champion:

— The urgent need for better, more robust cancer data collection, including capturing recurrences and metastasis, subtype, and information about race, ethnicity, identity, and social determinants of health to allow for evidence-based decision making and long-term planning in breast screening services. 

— Governments ensuring they are planning for future levels of breast screening (average- and high-risk programs) and diagnostics, including understanding workforce, equipment needs and funding requirements. 

— Investments into extra targeted efforts for underserved populations such as:

• Earlier screening for Black, Asian and Hispanic women, for whom breast cancer incidence peaks in the 40s. 

• Providing convenient, flexible and equitable access to screening, especially for those who face barriers when trying to get screened. 

• Focused promotion of breast screening in communities where uptake is lowest.

And finally, screening programs must prepare to adapt and implement new screening technologies. While I’m noticing mammography-based screening guidelines being back in the headlines, I’m also noticing a plethora of journal and news articles and opportunities for Rethink to provide patient group input into projects exploring new, improved screening tools. This is truly exciting. 

Future: We have precision-oncology, and we also need precision-screening and risk reduction strategies

When we think about an important investment to save lives from breast cancer, why is simply lowering the screening age for average risk people something that is so widely championed? Are there other investments that could save more lives? 

Just a few weeks ago, a prominent US podcaster in her mid 40s shared her breast cancer diagnosis publicly. She’d started screening mammograms at age 40 but this past year, she’s been on a journey to understand her own risk. She discovered some murky family history with stigma resulting in obfuscated references to people dying of “lady cancer” and she learned that her extremely dense breast tissue made her risk higher. So, she pushed for a more comprehensive approach to her annual screening. Recently, she had a 3D mammogram that was completely clear. A week later, her MRI showed something that led to a biopsy, which led to her breast cancer diagnosis. 

On the other hand, even high-risk screening programs are no guarantee to catch every breast cancer early. Last October, I participated in a roundtable with other cancer leaders in Ontario to develop recommendations for Cancer Care Ontario (CCO), which was in the process of developing a renewed 5-year Cancer Plan. At the meeting, a young breast cancer patient shared her older sister’s story, which highlighted the challenge with screening young people in their 40s. Her sister is a young woman in her 40s who was in a high-risk screening program because of their mother’s diagnosis so she is getting an annual mammogram and MRI. Although Jewish, they are not BRCA positive and have no known genetic mutation. Between her annual screening in a high-risk program, she was diagnosed with breast cancer, and it had already spread to her lymph nodes. 

This is a lot of the type of breast cancer Rethink sees in younger women – the more aggressive forms, the more aggressive behaving tumors that are diagnosed more frequently in younger people. These cancers can pop up between screenings even if you are screened annually in a high-risk screening program.

Rather than expand a status quo program merely on age, would a risk stratified approach, the implementation of more effective tools and interventions and funding for these tools to be available to screening programs based on people’s comprehensive risk profile, save more lives? 

Population-based genomic testing may not be that far down the road. As costs have been reduced dramatically, leveraging the power of genomics to reduce risk, diagnosis and treat disease feels like the future – or at least a big part of it. Imagine a healthcare system where everyone has an equal opportunity to benefit from genomic healthcare regardless of their disease, where they live or their socio-economic status. 

We have been very aware of the PERSPECTIVE study in Canada led by Dr. Jacques Simard and we recently learned of Dr. Esserman’s WISDOM Study at 5 sites in California. WISDOM is using the full spectrum of existing and emerging risk factors, including an understanding of inherited genes, mutations and combinations of genes to predict fast versus slow growing cancers, and they are working to bring in mammographic AI for phase two of the study.   

My hope is trials like WISDOM and PERSPECTIVE along with retrospective data-mining studies will inform future guidelines and approaches to screening and risk reduction not too far down the road. My fear is that we’re at a point in culture where even in the face of evidence from trials suggesting a pragmatic approach is smarter and more effective, a paradigm shift to precision screening based on risk versus age-based screening would be nearly impossible. Channeling my cultural studies background, changes in media are playing a huge role. The way media has evolved over the past decade means we have very few senior experienced health editors, health news researchers and health journalists who have been creating health news with depth so one-sided stories pulled from press release are the norm now (sidebar: Andre Picard can never retire!).

The rise of social media, changing donor demographics and economic pressures on organizations are also a factor. I’m a huge supporter of patient centricity, personal story telling and patient advocacy – it’s in our DNA over here at Rethink. But in an evidence-based advocacy approach, individual patient experiences is what inspire an evidence generation study to identify scope of the issue. Then, meaningful stakeholder consultations lead to tangible recommendations to decision makers. And then, if an ask of policy makers is developed based on the evidence, personal story telling is used to champion what the evidence shows and make it relatable. These are important steps that lead to good policy change. I don’t even know what to say about donor demands influencing policy and position papers on health issues. That’s disturbing. 

Much of our work at Rethink is focused on supporting individuals who have had their lives turned upside-down by a breast cancer diagnosis, providing programming to address the emotional impacts of a breast cancer diagnosis. Equally, our work has been focused on cancer system change advocacy that improves outcomes for the breast cancer community. That part of our work involves zooming out, thinking about interconnectivity, seeing things as relational and asking questions. So, when it comes to the conversation about breast screening for average risk women, we’re in a “both and” situation straddling equal parts compassion and support for breast cancer patients at an individual level and, and from a health equity perspective, keeping our eye out for unintended negative impacts and consequences to breast cancer care that must be avoided.

And, honestly, I am even feeling some compassion for bureaucrats and health policy makers too. I could never be one myself. 

My hope is that those working within individual aspects of the cancer care system understand it really is an ecosystem and that all parts need to work together for outcomes to improve. Rethink’s history has been championing issues impacting younger people and people living with MBC. We have been intimately engaged with those navigating what I’ll call the entirety of the breast cancer experience – challenges with understanding risk and risk reduction, with diagnostics, recurrences, accessing treatment, managing side-effects, accessing palliative care, facing premature death and grieving loss. We’ve seen progress and continuing challenges and new opportunities for improvement in all these aspects of care. And that’s why we remain committed to telling a more complete story of breast cancer and questioning the status quo. More to come. 

— MJ DeCoteau, Founder + Executive Director, Rethink Breast Cancer

To read the draft update from the Canadian Task Force on Preventative Health Care, click here.