Concerns about the upcoming Spring 2024 breast screening guidelines.

The Canadian Task Force on Preventive Health Care (Task Force) is currently updating Canada?s breast cancer screening guidelines. Dense Breasts Canada is concerned that the guideline update process lacks accountability, transparency, scientific rigour, equity, objectivity, and credibility.

The concerns below have been brought to the attention of senior officials in Health Minister Mark Holland's office and the Public Health Agency of Canada. Time is of the essence to correct the flawed process. Canadian lives depend on it.

Will the government take accountability and ensure the safety of Canadians? Canadians deserve guidelines based on current science and our diverse population.

Please read our concerns in the FAQ below and consider adding your voice by emailing Minister Holland

What exactly is the Task Force?

The Task Force that makes the breast screening guidelines is an independent body, made up of volunteers, and funded by the Public Health Agency of Canada.

Role of the Task Force: It develops guidelines to support~48,000 family doctors and 6000 nurse practitioners in delivering preventive health care to Canadians. However, when it comes to breast cancer screening guidelines, we have many concerns. Other specialties do as well.

What are the current breast screening guidelines?

The 2018 breast cancer screening recommendations are unchanged from 2011. The guidelines given to family doctors and nurse practitioners :

Recommend AGAINST screening at 40
Recommend AGAINST supplemental screening for women with dense breasts
Recommend AGAINST clinical breast exam
Recommend AGAINST self-exam
Recommend AGAINST Tomosynthesis (3D mammograms)
Recommend screening only every 2-3 years for ages 50-74

These guidelines are causing harm to Canadians. We need to see change for the 2024 guidelines.

Why did the government order an update of the guidelines?

After the US Task Force recommended that the screening age be lowered to 40 from 50, the Canadian government announced $500,000 to expedite an update of our breast cancer screening guidelines (June 2023).

The announcement from the health minister stated, ?Having breast cancer screening guidelines that are based on the latest science is essential?. Updates to Task Force guidelines ensure they remain reflective of the best and most current available evidence."

Members of the Liberal government stated that it was important to ensure that women have access to screening at 40 because more women are being diagnosed earlier and because the needs of racialized women are not being taken into consideration.

Does the Task Force panel have expertise in breast cancer screening?

The 14-member volunteer panel does not have any experts in breast cancer or breast imaging. Panel members are instead experts in methodology.

The 6-member breast working group includes two family doctors, a gastroenterologist, a nephrologist, a methodologist, and a nurse practitioner.

These non-breast cancer experts decide and vote on the guidelines. Even though they are not licensed to practice in breast cancer related areas, these panel members develop nationwide guidelines, potentially compromising public safety and trust.

There are only two patients involved in the 2024 update, and they do not vote.

Breast cancer experts, who are aware of the clinical context and changing data, should have a vote, but they are excluded from voting/decision-making.

Many Canadians assume that the guidelines are made by breast cancer experts. This is a breach of the public?s trust.

Does the Task Force have accountability and oversight of its activities?

No it does not. The Task Force was formed in the 1970s, but disbanded in 2005. When it was resurrected in 2010, the design failed to include an internal accountability structure for oversight.

Although the Task Force is considered arm's length from the Government of Canada, accountability must be built into the Task Force structure and protocols. This is critical in ensuring that guideline errors are acknowledged and corrected in a timely fashion and that expert advice is not ignored.

Once the guidelines are published, they remain in place ~7 years. There needs to be a process for updating the recommendations earlier as new research is published, so that they reflect current knowledge and clinical realities.

The Task Force does not monitor the outcomes of their guidelines. There have been worsening outcomes with an increase in the incidence of later-stage breast cancer since 2011 following the recommendation not to routinely screen women in the 40s.

A validated Canadian model predicts that following the Task Force recommendation of not screening Canadian women in their 40s is leading to over 460 avoidable breast cancer deaths in Canadian women each year. Recently published Canadian research also shows that there are large reductions in treatment costs when cancers are detected earlier.

Does the Task Force process demonstrate transparency?

The Task Force operates without transparency in its evaluation of the science, requiring all those who communicate with it to sign non-disclosure agreements.

A lack of transparency prevents discussion or correction before recommendations are finalized. For full transparency, all meetings of the Task Force and its working groups should be open to observers.

The US Task Force published its draft recommendations and released the complete evidence review documents to the public. The Canadian draft recommendations and evidence review should be circulated for broader public input.

Why is there continued use of use of outdated and flawed evidence?

In June 2023, the Government made a commitment that the guideline update would use the latest science. That is not the case.

When the US Task Force recently updated their guidelines, they determined that 2016 was the starting point to evaluate new evidence. However, the Canadian Task Force dictated to the evidence review team that studies from 40-60 years ago had to be used, including the flawed 1980s Canadian study (CNBSS).

The CNBSS heavily influenced the 2011 and 2018 guideline NOT to screen women 40-49. It has been discredited, and its issues have been covered in recent publications. As well, the CNBSS was based on 98% white participants and is racially biased. Why is it still being used for the 2024 update?

While the old studies (RCTs) demonstrated that breast cancer screening did save lives, they tested approaches to earlier detection and therapy that are no longer used or that have evolved tremendously; the old data are no longer reflective of today?s healthcare. Therefore, inferences based on those studies are of diminished value in quantifying the effectiveness of today?s interventions.

Is there evidence that is not included that should be included?

The Canadian Task Force is not including important evidence that was used by the US Task Force in their May 2023 update recommending the screening age be lowered to 40.

The US used rising incidence of breast cancer in women in the 40s of 0.4% per year to change their guideline, and Canada has a similar significant rising incidence of breast cancer in women in the 40s of 0.5% per year since 2000, but this evidence is not being used. Why not?

How does the Task Force overemphasize harms?

The Task Force exaggerates so-called ?harms? associated with screening, when some are not important to most women. One is what they call "false positives,? but that term false positives is a misnomer. It refers to when women need more tests after a screening mammogram (and 95% of them are NOT cancer). A better term would be ?callback,? or ?false alarm.?

The other is ?overdiagnosis,? which is when screening finds a cancer that might not lead to a woman?s death because she dies of something else sooner than she would have from a breast cancer. That?s why any woman diagnosed with a new breast cancer should have a discussion with her doctors about her general health and risk of unnecessary treatment, before making treatment decisions.

The Task Force doesn't put these ?harms? into context compared with the benefits of screening; reducing deaths, and allowing women to have less aggressive treatments, when cancers are found early with screening. In 2018, the Task Force ignored women?s wishes in the conclusion of their own review of women?s values, and preferences.

How is there systemic racism and discrimination in the guideline making process?

The Task Force has relied on research performed almost exclusively on white women in Canada and Europe from the 1960s to the 1980s. These old, racially-biased trials were used, and decades of modern research studies were ignored in the current 2018 guideline.

By using the old research and downgrading the more recent studies, including those using modelling, the Task Force is systematically discriminating against women of colour, who were not included in the old trials. The Task Force ignores that women of colour get breast cancer younger than white women. Their peak of breast cancer is in their 40s, and their cancers are on average, more aggressive than cancers in white women, and they are more likely to die when they are not caught early.

To ensure appropriate representation of Canada?s diverse population, the panel reviewing the evidence and the research they use should represent Canada?s diverse population.

The 2023 US breast screening guideline addressed the varying peak incidences among ethnicities by recommending starting screening at age 40.They made a commitment to help reverse the negative impacts of systemic and structural racism, gender-based discrimination, and bias. Canada should do the same, given our similar racial disparities, and established peak incidence and worse outcomes of breast cancer in the 40s in Filipina, Indigenous, Black, Asian, and Hispanic ethnicities.

How does the Task Force influence inequity in access to a standard of care?

Provinces are aware of the flaws in the Task Force guidelines and many have chosen to ignore them. This has led to variability in screening policies across Canada, resulting in unequal access across the country. This goes against the Canada Health Act.

Although the current Task Force recommendation is against screening at 40, four provinces screen at 40, one at 45 and two recently announced plans to screen at 40 starting in 2024. Three others are exploring policy change.

BC and AB already offer supplemental screening for women with dense breasts, and Ontario just published recommendations to do so.

How have women with dense breasts been ignored?

In 2018, the Task Force did not acknowledge the risks of dense breasts and ignored evidence to support the use of supplemental screening. Dense breasts increase the risk of breast cancer and make it harder to see cancer on a mammogram. Women with dense breasts are not average risk, and 43% of women over age 40 have dense breasts.

Women with dense breasts are more likely to have a delayed diagnosis, larger, more aggressive cancers, and a poorer prognosis. Evidence on the benefits of supplemental screening has existed for decades.

What is the impact of siloing of the evidence review centres?

Is the Task Force leadership impartial?

The Task Force co-chair, who is also the chair of the breast screening guideline has made inappropriate statements to the media. She pre-judged the outcome of the evidence review update, showed a lack of objectivity, and a strong ideological bias against screening.

After the US Task Force announced that the screening age would be lowered to 40, and before the Canadian evidence review had even begun, Dr Thériault stated in the Toronto Star, and in other media that there was no need to change the screening recommendations based on her estimation that there was no new evidence.

She also stated, ?The Canadian Task Force does not intend to update guidelines set in 2018 because the benefits of earlier screening do not outweigh the risks of false-positive results and overdiagnosis when harmless tumours are detected.?

All task Force members should be selected for scientific expertise and any conflicts of interest should be declared and mitigated.

We believe the lack of impartiality of the Task Force leadership can undermine the credibility of its recommendations.

Do other specialties share similar concerns?

Summary of Dense Breast Canada's concerns.

The Task Force panel has interfered with the evidence review group by dictating old studies (RCTs) from the 1960s to 1980s be included in the evidence review.
The Task Force panel shows a poor understanding of the science as seen by their insistence on using old studies. These studies were conducted under conditions that are not reflective of modern cancer detection and treatment. One of the studies is corrupted.
The Task Force continues to undervalue the demonstrated benefits of screening, and overemphasize so called "harms."
Systemic racism is an issue due to the use of old studies that had predominantly white participants.
Some provinces have lost confidence in the Task Force decisions and are making their own guidelines based on current evidence, leading to different practices across the country.
There is silo-ing of information due to the use of multiple evidence review centres in the guideline making process.
The Task Force is an arms length, independent body. However, it is missing a governance mechanism to oversee its procedures and ensure the well-being and safety of Canadians.
The leaders of the Task Force appear to be biased. They seem to have a strong opinion against screening. They announced the result of the update before reviewing the evidence. Publicly, they said there's no need to change the guidelines from 2018.
Similar concerns about the Task Force are held by various other specialties and can be read about ici

Recommendations.

Implement an accountability structure and governance mechanisms.
Allow breast cancer screening experts and patients to vote on the final guidelines.
Improve transparency of the entire review process.
Address the bias and impartiality of Task Force leadership
Address gender and racial bias in the evidence review process and working group.
Change the weighting of the evidence to emphasize more modern evidence that includes a diverse population.
Address silo-ing from evidence review centres.
Allow input from the public on the draft guideline as the US did.

This recent program by CBC Radio White Coat, Black Art has additional information. Listen ici

In addition to breast cancer screening, many other specialties have similar concerns about their guidelines and have formed Responsible HealthCare Guidelines (RHG).

RHG is a coalition of concerned healthcare professionals and patients with a mission to advocate for evidence-based policies and practices that prioritize the well-being of patients. Specialty areas are voicing concerns re the Task Force guidelines in these areas: prostate cancer screening, cervical cancer screening, postpartum depression, HCV screening, lung cancer screening and ophthalmology.

You can read the briefing note ici

Concerns about the current 2018 Guidelines.

Did you know the current 2018 Canadian breast cancer screening guidelines are misleading, dangerous and based on flawed studies?

Qui ont rédigé les lignes directrices ?

The 2018 breast cancer screening guidelines were made by a panel of 14 members selected by the Public Health Agency of Canada and the College of Family Physicians of Canada.

Le groupe ne comprenait aucun expert en dépistage du cancer du sein. Le groupe comprenait un psychologue, un ergothérapeute et un néphrologue (spécialiste des reins), des médecins de famille, des infirmières, un chiropraticien et un médecin d’urgence. Les lignes directrices ont ignoré la contribution d’experts en diagnostic et traitement du cancer du sein. did not include any experts in breast cancer screening. The panel included a psychologist, an occupational therapist and a nephrologist (kidney specialist), family doctors, nurses, a chiropractor, and an emergency room doctor. The guidelines ignored the input of experts in breast cancer diagnosis and treatment.

Pourquoi n’y avait-il pas d’experts en dépistage du cancer du sein dans le groupe ?

Le groupe d’étude a déclaré que la présence d’un expert en diagnostic du cancer du sein risquerait de fausser l’élaboration des lignes directrices. Le groupe d’étude a laissé entendre que puisque les experts gagnent leur vie par le diagnostic de cancers du sein, ils vont passer leur profit financier avant le bien-être des patients. Nous sommes fortement en désaccord. Au Canada, nos radiologistes ont des listes d’attente et leurs salaires ne sont aucunement liés à plus grande demande.

À qui s’adressent les lignes directrices ?

Que disent les experts à propos des lignes directrices ?

Des milliers d’experts sont de l’opinion que les lignes directrices devraient être rejetées. Les 2 000 membres de l’Association canadienne des radiologistes ont publié une déclaration rejecting the guidelines. CAR is expected to publish its own guidelines shortly.

La Société canadienne de l’imagerie mammaire a publié une déclaration rejetant les lignes directrices.

There have been many op-eds. There are also published articles on the flaws of the main study used to make the guideline against screening for women in the 40s.

Pourquoi les lignes directrices sont-elles dangereuses ?

Pourquoi les femmes dans leur quarantaine ont-elles besoin d’un dépistage ?

Here?s why women in their 40s need mammograms:

L’incidence du cancer du sein augmente à l’âge de 40 ans
16 % des cancers du sein surviennent chez les femmes dans leur quarantaine
La moitié des cancers mortels sont diagnostiqués avant l’âge de 49 ans
Women who screen in the 40s are 44% less likely to die from breast cancer than women who do not have mammograms

The evidence supports women in their 40s being screened.
Selon 2 modèles, le Dr Martin Yafa et la Dre Nicole Mittman ont estimé que 400 femmes perdront leur vie chaque année au Canada si la recommandation du non-dépistage par le Groupe d’étude est suivie.

Quels sont les avantages de la mammographie ?

Une étude canadienne portant sur 2,8 millions de femmes faisant l’objet d’un dépistage du cancer du sein depuis plus de 20 ans a montré que les femmes de 50 à 70 ans avaient un taux de décès 40 % plus bas que les femmes n’ayant pas subi de mammographie. Cette étude démontre aussi que les femmes âgées de 40 à 49 ans affichaient une baisse de 44 % du taux de mortalité par cancer du sein avec leur participation au dépistage [mammographie].

Une étude récente réalisée en Suède a montré une baisse de 60 % du taux de mortalité au cours des 20 premières années après un diagnostic de cancer, et une baisse de 47 % du taux de mortalité au cours des 20 années suivant un diagnostic de cancer, chez les femmes qui ont subi une mammographie, comparé aux femmes qui n’ont subi aucune mammographie.

Quels sont les désavantages aux femmes dont le Groupe d’étude le leur demande de considérer
A) Anxiety from a ?false positive??
Le terme « faux-positif » est un mésusage par le Groupe d’étude. On pourrait penser que cela signifie qu’une femme a été informée qu’elle a un cancer, alors que ce n’est pas le cas. Le Groupe d’étude utilise ce terme lorsque le résultat de la mammographie détecte quelque chose, et la femme doit retourner pour d’autres examens pour déterminer si elle a le cancer ou non. La grande majorité de ces femmes n’ont pas le cancer. Selon le résultat de l’imagerie supplémentaire, une biopsie à l’aiguille avec anesthésie locale est parfois réalisée. Un degré minimal de malaise sera ressenti.

Sans aucun doute, le rappel induit un certain stress, mais ce stress s’est avéré de courte durée et est résolu lorsque les résultats négatifs de l’imagerie sont obtenus. Habituellement, lorsqu’elles sont informées de la situation, la plupart des femmes sont prêtes à faire face au stress plutôt que de courir le risque de manquer le diagnostic d’un cancer qui pourrait raccourcir leur vie ou qui lui ferait subir un traitement plus agressif.

B) Surdiagnostic
Le surdiagnostic est la possibilité théorique que certains cancers découverts par le dépistage restent inoffensivement cachés dans le corps jusqu’à ce que la femme meure d’une autre cause. Il est probable que cela se produit dans une certaine mesure, mais cela ne peut qu’être estimé. Le Groupe d’étude exagère l’incidence du surdiagnostic. La plupart des experts estiment qu’il se situe entre 1 % et 10 %. Un surdiagnostic est plus plausible chez les femmes âgées, qui peuvent avoir d’autres maladies (maladie du cœur) et même d’autres cancers, qui pourraient être la cause de leur mort avant le cancer du sein. Mais la probabilité de surdiagnostic est infiniment petite chez les plus jeunes femmes.

Comment les décisions entre le patient et le médecin sont-elles entravées par le groupe de travail ?

The decision whether to participate in screening is up to individual women with advice from their health care provider. For there to be true shared decision-making, both a woman and her physician need to have clear and accurate information on the benefits and harms of screening. Read below the misinformation Canadian experts are trying to dispel amongst women and physicians.

Addressing Misinformation about the Canadian Breast Screening Guidelines

What you can say to your provider if you want a mammogram in your 40s

You?re in your 40s and you?ve decided you?d like a mammogram, but in your province women in their 40s need a requisition. Your health care provider will not give you one or needs to be convinced. Or you?re in your 40s and you?ve decided you?d like a mammogram. You can self-refer in your province, but your health care provider dismisses the importance of you having a mammogram. We?ve designed a script to help you advocate for yourself and overcome any potential barriers while having a conversation with your health care provider. PLEASE NOTE IN JULY 2023, The Task Force published a newsletter where it stated that following a conversation between patient and provider, if a woman chooses to have a mammogram, she should have a mammogram. This is the clearest messaging to date from the Task Force that the decision to screen is a woman's and she should not be denied a requisition if she wants one.

If your health care provider says: The Canadian breast cancer screening guidelines do not recommend mammograms for women in their 40s.

You can respond: I understand that is the recommendation but it also states, that the decision whether or not to have a mammogram is a woman?s and that depends on the values she places on any possible benefits and harms.[1] Therefore, based on my values, this is my decision and I?ve decided to get a mammogram.

If you need a further response: You can use this quote from Task Force vice-chair Dr. Ainsley Moore, ?The new guidelines are intended for an empowered position, which puts the decision-making in the hands of the individual woman in terms of what she prioritizes.?[2] Based on a woman?s values and preferences, the decision to undergo screening is conditional on the relative value a woman places on possible benefits and harms from screening. Please also refer to the July 2023 Task Force newsletter where it conveys the final decision is a woman's.

If your health care provider says: You don?t have a family history or other risk factors and so you don?t need to start screening in your 40s.

You can respond: I?m aware that the biggest risk factor for breast cancer is being a woman and that over 75% of women diagnosed with breast cancer have no risk factors.

**If it applies to you, you can remind your health care provider that Black, Asian and Hispanic women are at an increased risk for breast cancer at a younger age than white women.[3]

If your health care provider says: Having a mammogram can result in a ?false positive?, meaning you may be recalled for more testing. These tests can create anxiety for you.

You can respond: I understand there?s a chance that more tests will be needed after my mammogram to make sure there is no cancer, but I?m not very worried about being recalled. I understand that less than 10% of women are recalled.[4] I?d rather be safe than sorry. I understand any anxiety I experience will be short-lived if I have a normal result. And if the result is not normal, I?d prefer to have cancer found at an early stage, rather than a later stage.

If your health care provider says: Having a mammogram can result in over-diagnosis. That means finding a cancer that if left untreated would never cause you any harm, but if detected requires treatment and surgery.

You can respond: I understand and I?m willing to accept that I may be treated for something that might never have become a problem if left untreated. Again, better safe than sorry.

If your health care provider says: This graphic shows that out of 1000 women who have a mammogram, only 1 life is saved.

Your response: I learned the Canadian Society of Breast Imaging states 2 lives are saved.[5] I also know that finding cancer early means I may avoid harsh medical treatments like chemotherapy and mastectomy that can reduce the quality of my life.

As stated in the Canadian guideline, the decision to have a mammogram is yours and therefore you have a right to have a mammogram in your 40s, no matter what province you live in.

[1] https://canadiantaskforce.ca/guidelines/published-guidelines/breast-cancer-update/
[2] https://www.ctvnews.ca/health/mammogram-guidelines-now-consider-women-s-personal-values-not-just-age-risk-1.4211240
[3] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5875337/?tool=pmcentrez&report=abstract
[4] http://www.bccancer.bc.ca/screening/breast/results
[5]https://csbi.ca/education/

Que puis-je faire pour exprimer mon inquiétude concernant les lignes directrices ?

The guidelines are currently under review and a draft is expected in Spring 2024. It is important to show our political representatives that Canadian women need credible and trustworthy guidelines made with meaningful expert input and based on current evidence. You can email the following:

Minister Mark Holland hcminister.ministresc@hc-sc.gc.ca

Écrivez à votre député

Watch Health Critic Don Davies question the Health Minister

The Health Minister on the government's new breast cancer screening guidelines

The Liberals on Canada's new breast cancer screening guidelines

Click to read this summary of what's wrong with the 2018 breast screening guidelines.

In December 2018, the Canadian Task Force on Preventive Health Care issued guidelines on breast cancer screening for women of average risk. These guidelines are used by 60,000 family doctors and nurse practitioners in their interactions with ~8 million women aged 40-74.

Here?s how the current guidelines put women?s lives at risk:

1. The guidelines ignore expert advice: There are no breast cancer experts on the Task Force panel who vote on the recommendations.

2. The guidelines ignore the importance of screening for women in their 40s: One sixth of breast cancer deaths and 24% of the years of life lost to breast cancer are in women diagnosed in their 40s. Even with statistics like these, the Task Force does not recommend screening for women in their 40s.

3. The guidelines advise against breast self-exams: Ces examens sont une mesure importante que les femmes peuvent prendre pour augmenter la détection précoce du cancer du sein, en particulier chez les femmes dont les seins sont denses.

4. Les lignes directrices exagèrent les méfaits du rappel des femmes pour des tests supplémentaires après une mammographie. Environ 10 % des femmes sont rappelées pour des images supplémentaires, ce qui peut causer de l'anxiété. Le Groupe de travail considère que cette anxiété est nuisible, et l'utilise pour dissuader les femmes de se soumettre au dépistage. Cependant, une étude démontré que cette anxiété ne dure pas longtemps, et c'est un petit prix à payer pour déterminer si le cancer est présent ou non. Mieux vaut prévenir que guérir.

5. The guidelines ignore significant health benefits of early cancer detection: Le Groupe de travail ne reconnaît pas les avantages d'éviter la chimiothérapie, la mastectomie et le lymphœdème.

6. The guidelines ignore current data: Le Groupe de travail s'appuie sur des données désuètes et des études erronées. Ces études sont obsolètes et estiment que les femmes sont de 15 à 20 % moins susceptibles de mourir si elles subissent un dépistage du cancer du sein. Les études actuelles montrent que les femmes qui ont des mammographies sont en fait de 40-44% moins susceptibles de mourir d'un cancer du sein que celles qui n'en ont pas.

7. The guidelines ignore the risks of breast density: Les risques de seins denses sont connus depuis 40 ans. Les seins denses augmentent le risque de développer un cancer du sein et augmentent le risque que le cancer soit masqué à la mammographie. Les lignes directrices ne tiennent pas compte des avantages du dépistage supplémentaire pour les femmes dont les seins sont denses.

8. On demande aux femmes de prendre des décisions au sujet des tests de dépistage qui pourraientt leur sauver la vie en se fondant sur des renseignements inexacts. En utilisant les nouvelles lignes directrices, qui exagèrent les méfaits et sous-estiment les avantages du dépistage, les femmes peuvent prendre des décisions qui pourraient mener à un diagnostic tardif, à des souffrances inutiles et à un mauvais pronostic.

Canadian women and their family doctors deserve to have accurate information about the benefits of screening.

Vous pouvez nous aider en signant et en partageant la pétition. Tell Health Minister Jean Yves Duclos that the new screening guidelines for breast cancer must be rejected because they are dangerous and will cause loss of life.

Click to read our 2023 Submission to the House of Commons Health Committee:
Expert Recommendations for Breast Cancer Screening in Canada