BreastScreen Australia conference debate “Breast density – Should we tell the women?”

InforMD members Jennifer Stone, Gerda Evans and Wendy Ingman were invited to participate in a debate at the biennial BreastScreen Australia conference in Adelaide 19th-21th April 2018. The topic was
"Breast density - Should we tell the women?"

The team in favour:
Gerda Evans, Community Advisor for InforMD
A/Prof Jennifer Stone, University of Western Australia
A/Prof Wendy Ingman, University of Adelaide

The team against:
Dr Bernie Towler, Principal Medical Advisor, Commonwealth Department of Health
Prof Sophia Zackrisson, Lund University
Prof Andrew Evans, University of Dundee
Prof Karen Canfell, University of Sydney

Prof Gelareh Farshid from SA Pathology was the moderator.

The audience was invited to vote "yes" or "no" to the question "Breast density - Should we tell the women?" on the conference App before the debate started. Each speaker had 4 minutes to state their case, and once all speakers had presented, the audience was invited to comment on their own perspective or ask questions of the speakers. Following the discussion, the audience was again invited to vote on the same question.

The against team argued that there was no clear evidence that density inform would benefit women, but there was clear evidence that it could cause harms, such as false positives associated with supplementary screening. They argued that without a clear direction for what women can do about high breast density, providing them with this information will cause anxiety and this is also considered a harm, These points are outlined in the BreastScreen Australia and the Royal Australian and New Zealand College of Radiologists position statements published in 2016. The team in favour of density inform argued that full disclosure is an obligation of Australian medical practice, that withholding information damages patient trust, and that the Western Australia policy of density inform has not resulted in the harms and anxiety that many may have feared, and could be used as a foundation on which to build a national policy.

Both teams argued very persuasively and it was a tough choice for the audience to make. Overall however, the team who argued against density inform won the day with 59% of the vote.

	Before debate	After debate
Yes	114 (80%)	56 (41%)
No	28 (20%)	79 (59%)

The conversation around breast density inform will continue.

Below are transcripts of the InforMD team's case in favour of telling women their breast density.

Gerda Evans

We propose that there should be open disclosure of mammographic density. I have had breast cancer and am in contact with women who have had a breast cancer missed because of mammographic density. Mammographic density is of great importance to them.

“I wish I had known that due to the increased density the mammograms were not as reliable….” (quote from patient)

National screening programs are dependent on population studies and clinical trials to inform their policies, and reliant on Government to fund their services. The discussion here relates to ‘the woman’.

“I feel I was let down by a system that I trusted to diagnose breast cancer." (quote from patient)

These women are angry. They have lost confidence in themselves. They have lost confidence in the screening services. They have lost confidence in their doctors. They want the system changed so others won’t have the same experience. They want acknowledgement that they have the right to their personal information. We agree with these women. We support these women’s right to their personal information to enable informed consent and shared decision making.

“It is a violation of my human rights for the government to know that I have dense breasts and not tell me.” (quote from patient)

Women are resilient and wise enough to be active partners in their health care management. We have no doubt that screening services and doctors have the best intentions ‘to do no harm’ and they feel that disclosure of density could do harm. Provision of information should not be considered a harm. Some health professionals are concerned that disclosure may cause anxiety because management options are not clear cut.

We feel that disclosure and management options are 2 different issues.

One issue is the right to information;
The 2nd is how to manage that information.

“However, the potential for a difficult decision on the appropriate clinical pathway ……… is irrelevant to my argument. My argument is that we have a right to know and a right to choose.” (quote from patient)

There is no place for paternalistic attitude of medical practitioners about what is best for the patient.

Anxiety should not be a reason for withholding information. Anxiety is a normal human emotion which enables resolution of problem situations. Anxiety is quite different from an anxiety disorder, which is a mental illness in which the person is incapable of resolving the anxiety without professional help. Doctors need to be honest and truthful for patients to have trust and confidence in them and to maintain the doctor-patient relationship.

"I'd like to attend (the MD conference in Melbourne) but don't fit into any of these attendance categories: Physicians, Scientists, Nurses, Students, Residents, Fellows, Allied Health Professionals, Consumer Advocates. They don't seem to have a category for 'concerned survivor of an epic failure/refusal by BreastScreen Australia to report dense breasts'.' (quote from patient)

It is our position that women who have dense breasts have a right to be informed and to receive appropriate information about the significance of breast density.

“I absolutely believe that women should be informed about their breast density and what that means.” (quote from patient)

Surely, we can all work together to ensure safe delivery of personal information allowing women to make informed management decisions.

Jennifer Stone

Have you ever been Perth? It is beautiful, sunny and warm. The sky has not fallen despite that for the past decade…

BreastScreen WA has been notifying women if their breast tissue is dense – informing them that breast density is normal. That breasts are usually denser in younger women. That they naturally become less dense as the breasts change with increasing age and the glandular tissue decreases. BreastScreen WA also informs women that when breasts are dense on a mammogram it is more difficult to see abnormal changes, including the early signs of breast cancer. Therefore, they tell women that it is important to have a careful breast examination by their doctor as well as a mammogram.

If women have nominated a GP, BreastScreen WA also sends a similar letter to their GP and they recommend women contact their GP to make an appointment to have a breast check. BreastScreen WA also provides information about breast density to GPs through their website and via regular information sessions coordinated by their GP liaison officer. GPs are recommended to assess their patient’s risk for breast cancer, perform a clinical breast examination, discuss ongoing patient breast awareness for breast changes and consider supplemental screening with breast ultrasound.

Regarding supplemental screening of women with dense breasts, BreastScreen WA informs GPs that supplemental screening is not currently recommended to women who are average or low risk based on evidence-based review studies. BreastScreen WA also informs GPs that performing supplemental screening on everyone with dense breasts will increase false positive diagnosis and unnecessary investigation. They acknowledge that there are no randomised controlled trials supporting the use of any imaging modality in women with dense breasts. However, in keeping with recommendations from American College of Radiology, BreastScreen WA suggests that it is reasonable for GPs to consider supplemental screening with breast ultrasound for women at intermediate risk of breast cancer due to a family history, a personal history of breast cancer, or other risk factors including premalignant lesions such as lobular neoplasia.

Some of you may have seen my talk regarding the latest results of our Breast Density Survey of BreastScreen WA participants. With over 5000 responses thus far we found that over 70% of women said that knowing they had dense breasts made them feel informed, compared to 22% who said knowing their breast density made them feel anxious and 24% felt confused. I don’t blame women for feeling confused. This is why we need open disclosure with a clear and consistent message. In the absence of evidence-based screening recommendations for women with dense breasts, women can still be informed of the reduced sensitivity of mammography for dense breasts and recommended to be breast aware. This may cause anxiety in some women but again, survey results suggest that anxiety does not appear to deter women from attending screening – rather the opposite.

From the survey we also estimate that around 17% of women who have been told they have dense breasts have had an ultrasound due to their density. I’m not an authority on the acceptable number of breast ultrasounds for a breast screening population but 17% doesn’t strike me as being that high and appears to be in reasonable proportion to the number of breast ultrasounds received by women who have not been notified about their density.
So come to Perth – see for yourself – the sky has indeed not fallen, despite a decade of breast density notification. Let’s work together towards informing everyone, not just women, about breast density - with a clear and consistent message.

Wendy Ingman

Wouldn’t it be great if there was one clear pathway to treat every health concern, and this pathway was based on results of randomised controlled trials that showed a clear benefit with no harms? Through continued research efforts we do make progress towards this ideal, with improved early detection, diagnosis and treatments, more and more women are surviving breast cancer. But we live in an imperfect world, and there is always going to be uncertainty, with different technologies and treatments available, all carrying different benefits, different risks of harms, with different levels of evidence.

With these uncertainties, how does Australian medical practice deliver high quality health care whilst protecting the public from harm? We definitely want the best in evidence-based medicine, but we as a community also acknowledge that individuals are the best judge of their own interests. What might be perceived as the correct course of action by the doctor, may not always be right for individual patients and their particular circumstance. Therefore it is imperative that patients are enabled to participate in shared decision-making with their doctor, through providing them with all the information they might deem significant in order to make their decision.

As outlined by the Australian Commission on Safety and Quality in Health Care, shared decision-making involves the integration of a patient’s values, goals and concerns with the best available evidence about benefits, risks and uncertainties, in order to achieve health care decisions appropriate for the individual.

The duty of full disclosure to enable patients to participate in decision-making is acknowledged by the Australian High Court, since the landmark Rogers versus Whitaker decision in 1992. An important aspect of this case was that it highlighted that full disclosure is not about what a doctor considers significant information, it is about what a patient considers significant. Doctors must provide all the information that might affect decisions a patient makes about their own health care management.

Patients trust doctors to be open and honest in their communication. This trust is an integral part of the doctor patient relationship. You have heard from Gerda how withholding information about breast density has impacted patients. Women are being excluded from the opportunity to be involved in decisions that have greatly affected their life, leading to anger and distrust in medical professionals.

It appears unlikely that our public health system will be able to provide supplementary screening to all women with dense breasts. However, if we want to enable patients to be involved in decision-making, density could be disclosed with careful wording to allay fears, without a direct recommendation to supplementary screening.

A multi-disciplinary panel of experts, including GPs, radiologists, surgeons, screening experts and most importantly women, are perfectly capable of reviewing all the evidence, and developing specific wording to communicate the right information.

We suggest that BreastScreen builds on the knowledge gained through the experience in Western Australia, where the approach has led to women feeling well informed, with a small percent choosing to pursue supplementary screening, as reported by Jennifer. I was in Perth recently, and it's true, the sky has not fallen in because women know their breast density.

There is an urgent need for breast density disclosure within the BreastScreen program, to enable patient involvement in decision-making and preserve trust in the doctor-patient relationship. We CAN do it, with input from multi-disciplinary experts and the wealth of knowledge gained from Western Australia.

Understand your breast density and be informed of the risks and screening outcomes.

Stay informed and advocate for better breast health by joining InforMD. Sign up and learn more about this movement and be part of the change.