NOT notifying women about their dense breasts robs them of the opportunity to seek supplemental breast cancer screening and the chance to catch any cancer as early as possible, say experts.

In response to a recent InSight+ article, which asked whether notification of breast density should be made routine practice in Australia, Professor Wendie Berg, Professor of Radiology at the University of Pittsburgh School of Medicine, said that women “need to know the truth”.

“Women can handle the truth,” she told InSight+ in an exclusive podcast. “There is a limitation to the mammogram and that is that in women with dense breasts, we know that [mammograms] miss 40% of cancers. They just don’t show up.

“Women need to know that truth. And in knowing the truth, they can become empowered to seek additional screening.

“It is on the medical community to become educated and to develop those options to help improve cancer detection.”

In the US, 38 states now require mammography services and radiologists to provide women some level of information about breast density after their mammogram. Mammograms are free to women over the age of 40 years and are recommended yearly.

Ms JoAnn Pushkin, who along with Professor Berg founded DenseBreast-info.org as a resource for both patients and doctors, told InSight+ there was no room for the paternalistic approach of “trying to protect women from the anxiety of knowing they had dense breasts”.

“I was going for mammograms every year and getting a normal result year after year after year,” she said.

“One day, during a self-exam, I felt a lump. I wasn’t particularly worried because I’d had a fairly recent normal mammogram. But I called my doctor and they called me in for a diagnostic mammogram and even though the lump was so large I could feel it, it didn’t show up on the mammogram,” she said.

“When I asked why it was missed, the technologist said ‘oh honey, you’ve got dense breasts – that’s going to be a hard find for us’.

“I learned that I had breast cancer, and I learned it had been missed because I had dense tissue, and I learned I had dense breasts, all within the space of 5 minutes.

“If I had understood the masking effect [of dense breasts on a mammogram], I certainly would have asked is there another tool, after a mammogram, that we should be talking about.

“Not being told that information, effectively denied me the opportunity to have that conversation and denied me the opportunity for an earlier stage diagnosis. You can’t have a conversation about something you don’t know you should be having a conversation about.”

Ms Pushkin said the argument of protecting women from the anxiety of additional or “unnecessary” testing was “ridiculous”.

“I am someone who would have gladly taken the temporary anxiety of additional testing to know I had cancer and to have found it early,” she said.

“When we talk about unnecessary testing, let’s be clear – that additional testing either will or won’t find cancer. Are we saying that any medical procedure or test that doesn’t result in an abnormal finding is unnecessary? How ridiculous.”

Women who know they have dense breasts can consider supplemental screening via magnetic resonance imaging (MRI) in addition to, or instead of, mammograms, said Professor Berg.

“Dense breasts are a double whammy,” she said.

“They increase your risk of developing breast cancer because most of that dense tissue is glandular tissue. The more glandular tissue there is, the more cells are dividing and potentially responding to oestrogen, and the more they can make mistakes and develop into cancer.

“The absolute risk [of developing breast cancer] is actually about fourfold higher in the extremely dense compared to the fatty breast.

“About 10% of women have fatty breasts, about 40% of women have scattered fibro-glandular density, another 40% have heterogeneously dense breasts, and about 10% have extremely dense breasts,” Professor Berg told InSight+.

“About 40% of all women who have mammograms have dense breasts. So, it’s a common problem.”

One pushback from US providers has been the fear of being overwhelmed by large numbers of women wanting additional screening.

“The enemy of good is perfect,” said Professor Berg. “Not every woman wants to seek additional screening, but if she does, in fact, want to do that and is willing to go through several hoops to get it, it could benefit her.”

Another big barrier is the lack of awareness among physicians of dense breasts and the consequences for breast cancer risk.

Professor Berg, who is a breast cancer survivor with dense breasts, said her own experience had opened her eyes to the education that was needed for her colleagues.

“I had a family history of breast cancer. We had a guideline recommending that women should have an MRI if they had an elevated lifetime risk of about 20%. My own risk was 19.7%, so I said, I’m going to go get an MRI,” she said.

“I had already educated my own doctor about supplemental screening because I led a trial and found excellent results, especially with MRI.

“My own doctor, when I said I’d like to get a script for the MRI, said ‘tell me again, why you want this’. I had just spent a good hour plus sending him all these papers, my own papers, the studies, telling him how to calculate risk, and he didn’t understand.

“We’ve got to educate women directly because you can’t just send them back to their doctors, if their doctors don’t know.

“Long story short, I got the MRI and found my own cancer. It was early and small and easily treated.

“At the end of the day, all any woman wants is, if she’s going to be screened for breast cancer, she wants to be able to find it early. She wants to know that the test that she’s taking is actually going to give her an accurate result.

“And unfortunately, we know the mammogram doesn’t do that very well, in women with dense breasts.”

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Poll

Women should be notified if they have dense breasts and offered supplemental screening
  • Strongly agree (74%, 202 Votes)
  • Agree (19%, 51 Votes)
  • Neutral (3%, 9 Votes)
  • Strongly disagree (3%, 7 Votes)
  • Disagree (2%, 5 Votes)

Total Voters: 274

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6 thoughts on “Breast density: we can handle the truth

  1. JoAnn Pushkin says:

    Thank you, all, for sharing these not-as-uncommon-as-they-should-be personal experiences. For much more info, please visit the world’s leading website on the topic, DenseBreast-info.org. There are many resources for both patients and health providers – including a comprehensive list of Q+As and patient education videos.
    Get Educated About Being Dense.

  2. Anonymous says:

    I would’ve never questioned anything had I come across this, bc like other woman talked about here, they had a regular mammogram. I do have dense breasts and that is very very good news to know and supply my Dr. Worth this information!!! I know I would want to know ASAP to take care of anything, should the worst ever happen

  3. Anonymous says:

    yes, breast screen is just that, a screen, not a 100% everything is ok! lobular cancer, DCIS = precancer not with calcification and inflammatory cancers are just not seen on mammogram . Adding an ultrasound and clinical examination hugely reduces a missed cancer scenario. And yes, every patient should know a breast MRI is the best test we have as it looks at the tissue behaviour via contrast. Educate patients so they can make their own choices.

  4. Anonymous says:

    I have never heard of breast density.
    I found my own breast lump 9 months after a mammogram which said my breasts were cancer free.
    I am so disappointed that my future is jeopardised by my lack of knowledge.
    I want truth so I have a basis for my decisions. How can I decide when I know nothing?
    Almost 2 years into my bc treatment I am scrambling for information about my cancer.

  5. Anonymous says:

    Have recently had the experience of having a normal breast screen mammogram. About 6 months afterwards found a lump “ as big as a jam donut” which turned out to be breast cancer. It was subtle even in the diagnostic mammogram and picked up on the ultrasound. Am now “enjoying” chemotherapy and of course was told I have very dense breasts. More information needs to be out there about the limitations of mammograms. Especially since dense breasts and breast cancer are common.

  6. Alison says:

    I hope someone waves this in front of BreastScreen Australia, which continues to bury its head in the sand by advocating for NOT informing women about breast density. The stellar exception to its policy is BreastScreen WA, which has a history of advocating strongly for the women of WA and has long informed women of their breast density. Its independence and advocacy is to be commended.

    I have first-hand experience of BreastScreen’s failure to detect because of breast density. I learned about BreastScreen’s deficiencies from my treating doctors.

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