When Heather Reimer turned 40, she did everything right.
Just as her health provider had recommended, Heather dutifully went to get her first mammogram. After receiving a notification that everything was clear (meaning, cancer-free), she didn’t give her mammogram another thought.
Later that year, she opted to get a whole-breast ultrasound to earn points for her employer’s wellness program.
It was then that Heather learned she’d had breast cancer all along—grade 3 triple-negative—but it had been hidden by her dense breast tissue. Treatment was extensive—including a bilateral mastectomy with reconstruction, eight surgeries, and 17 weeks of dense-dose chemotherapy—but successful.
After recovering, Heather was determined to make a change.
In 2013, she partnered with Wendy Damonte to form "Each One. Tell One.", an organization dedicated to educating women about breast density, the associated increased risk of breast cancer, and screening options.
“Our secondary mission,” Heather recounts, “was to encourage every person to tell another person about these same things.”
Heather recently spoke to WellRight about her experience and organization and offered her thoughts on how and why employee wellness programs should use their platform to educate employees about this risk.
Why Mammograms Aren’t Always Enough
Heather’s story, unfortunately, isn’t unique. One of Heather’s close friends was also diagnosed with breast cancer—also after having a “clear” mammogram—after the traditional mammogram missed three large tumors.
While Heather doesn’t disagree with the push for women to begin annual mammograms at age 40, it’s what happens after the mammogram that she wants to see change. With Heather, her doctor came in after the mammogram and let her know that while she had extremely dense breast tissue, everything looked fine.
At the time, she didn’t know to ask what “dense tissue” meant—or what implications it had on her results or health. “We trust doctors to give us the information we need,” Heather says, “and patients don’t generally have an opportunity to talk with their radiologist or even see their actual mammogram. They just get a letter in the mail saying everything is OK.”
Why Are These Cancers Being Missed?
The statistics are scary: “70% of all invasive cancers, the ones that kill you, are found in dense tissue,” Heather reveals. And when cancers are left undetected, there’s a distinct correlation between survivability and cancer size. So until there’s a cure for breast cancer, Heather encourages medical professionals and patients to do what they can to discover tumors while they’re small and easier to treat.
But if dense breast tissue carries such risks, why isn’t dense breast tissue being discussed already? When Heather started asking this very question, she got these three answers:
Evidence-Based Medicine Doesn’t Yet Support New Standards of Care
Current medicine is all about standards. “And the current standard of care is the mammogram—talking about dense breast tissue isn’t part of that standard,” she explains. “But unfortunately, we end up ignoring the important fact that mammograms are effective for only about 50% of women. That’s a lot of women who are missing critical information about their health.”
But while screening alternatives like MRIs and sonograms might catch more instances of cancer, the concern in the medical field is that it also increases the likelihood of inconclusive results and false positives. Doctors, understandably, aren’t likely to advocate for potentially unnecessary biopsies. But patients, on the other hand, might prefer having an unnecessary biopsy that rules out cancer rather than be blindsided by discovering the disease when it’s harder, or even too late, to treat.
The Cost of Alternative Treatments Can Be Expensive
Right now, what’s covered by insurance or the Affordable Care Act is a mammogram. The costs of any other screenings (or biopsies) would need to come out of the patient’s pocket, and that isn’t always feasible. So while an MRI or a sonogram might be helpful diagnostically, doctors aren’t likely to suggest tests for which a patient might have to pay on their own.
The Same Screening Technology Isn’t Offered Nationwide—and Isn’t Always Effective
Although there’s some impressive screening technology becoming available, it’s not yet available throughout the United States—making it challenging to adopt it as a standard of care.
Some healthcare providers have begun offering tomosynthesis, or the 3D mammogram, as an improved way to identify tumors in dense breast tissue. While this new technology does help identify tumors not caught by traditional mammograms, it’s not a perfect solution. Instead, women with dense breast tissue may need follow-up exams that include ultrasounds or MRIs, which can find more and smaller cancers than can mammography alone.
One of the best tools for finding cancer early is simply your own voice. Follow these five simple steps to ensure you’re fully informed about your breast health:
F: First, schedule your mammogram.
A: Ask your doctor what additional screening exam is right for you.
C: Complete an additional screening exam if you have dense breast tissue.
T: Tell at least one stranger, friend, and family member about breast health.
S: Save a life. It could be your own.
How Women Can Start a Movement for Better Care
“The whole idea behind Each One Tell One is to build a grassroots movement, especially among women,” Heather explains. The organization starts by educating women, who in turn, educate their physicians. Heather understands that she can’t effectively go into every doctor’s office and lobby for change. But what will be effective is if every doctor’s female patients start asking about dense breast tissue and more effective ways of screening for breast cancer. “Imagine what would happen if doctors saw 20 women a day, every day, who were pushing for change,” Heather marvels. Those doctors might start to reconsider their approach and could use their collective voice to push insurance companies to change.
Nancy Capello’s “Are You Dense” movement is another organization trying to accomplish this big-scale change by pushing for states to legally require that after a mammogram, health providers let the patient know what type of breast tissue she has.
Her efforts are paying off: 33 states now require wording on mammogram results that will indicate if the patient has heterogeneously dense or internally dense breast tissue. Combined with the knowledge of the risks of dense breast tissue, women will know to talk with their healthcare provider about alternate screening methods.
Another way these small movements are effecting big change can be seen in a doctor’s office near Heather. The provider now requires all women with dense breast tissue to watch a video that educates them on the increased risk of developing breast cancer. It’s these conversations that will make the difference in women’s health, Heather emphasizes.
“The bottom line,” she says, “is that if your doctor isn’t willing to listen to and talk with you about this, they might not be the right doctor for you.”
Fewer than 1% of all breast cancers occur in men, and approximately 2,550 men are expected to be diagnosed with breast cancer in 2018 (compared with an estimated 320,000 women).
The prognosis of male breast cancer is like that of women: predominantly influenced by tumor stage. That’s why it’s important for men who may be at high risk (e.g., strong family history of breast cancer, genetic mutations, heavy drinking, liver disease) to conduct self-exams and undergo routine screening.
Transgender men need to pay particularly careful attention to breast health, as they may not automatically be included in routine cancer screenings or educational initiatives that are geared toward cisgender women.
Adding Breast Health to Wellness Programs
It’s not just medical professionals and grassroots movements that have the power to effect real change. Employers can ensure staff are well-informed about their risks by including breast wellness and education programs to corporate wellness programs. Here are three ideas for getting started.
It’s one thing to read about breast cancer in the abstract. It’s another to hear a personal story from someone who’s experienced it. If you have a staff member (or external friend or acquaintance) who is willing to share her story, it can serve as a powerful incentive for your employees to think about their own breast health.
Create Educational Videos or Brochures
Because most people don’t know about the different categories of breast tissue, and they’ve probably never seen their mammogram, consider creating a video or a brochure that educates employees on breast health, the risk factors of dense breast tissue, and the need for early detection.
Inform Employees About New Technology
Employers should find out what breast cancer-detecting technology is available for their employees and share that information. And if there’s better technology available locally, look at ways to make those options affordable and accessible, like Heather’s employer did with the whole-breast ultrasound.
If we could do all these things, Heather explains, we might not even need organizations like hers. “Organizations like Each One Tell One and Are You Dense simply advocate for the enhancements needed to keep women safe. By talking about types of breast tissue and their risk factors, women can be armed to take their health into their own hands.”
The bottom line? “We’ve been taught to trust our doctors, but women really need to trust themselves, too.”
To learn more about how you can incorporate employee education on topics like breast density and cancer risks into your employee wellness program, contact one of the program specialists at WellRight. They can help you design a program that educates and informs—and that also teaches employees how to take control of their physical, emotional, and overall wellness.