Breast density was a hot topic at the Radiological Society of North America (RSNA) Annual Scientific Meeting in Chicago in December. A new grassroots initiative, “Each One. Tell One.”, also known as the Dangerous Boobs Tour, made its debut through the sponsorship of SonoCiné AWBUS™, an Automated Whole Breast Ultrasound technology that provides a supplementary examination for women whose mammograms are inconclusive.Heather Reimer, Chief Visionary Officer of Each One, Tell One and Co-Founder of the Dangerous Boobs Tour took time to speak with HealthManagement about their mission.
Why Dangerous Boobs Tour?
First of all, because it gets your attention. Boobs ARE dangerous if you don’t know how to take care of them. “Each One. Tell One.” is a movement to raise dense-breast tissue awareness for early breast cancer detection. We want each person who learns this information to tell another until every woman in the U.S. understands what she needs to do about her own breast health. The Tour is the presentation arm of the “Each One. Tell One.” movement. It consists of the three co-founders, Wendy Damonte, Chiqeeta Jameson and me. We have all been devastated by breast cancer because of dense-breast tissue and have discovered a powerful way to combine our unique stories that move women to take action about their own breast health. Our tour is an educational, medically based, inspirational presentation. We travel the country with a tailored performance to fit each audience who hears our message. It may be one of us, two of us or all three. Regardless, if you are a woman that hears our message, you will leave with information that you probably have never been told. You will want to share this information with your friends and loved ones and you will be empowered to call your doctor to find out if you have dense-breast tissue and what you need to do about it. And THAT is the purpose of our “Each One. Tell One.” movement.
My cancer was missed by the mammogram because I had dense-breast tissue. It was later discovered through an Automated Whole Breast Ultrasound examination as a fast growing triple negative invasive cancer. A year after I finished treatment, a friend of mine called to tell me that she too had dense-breast tissue and her cancer was also missed by the mammogram. It was then that I founded “Each One. Tell One.” I realised that my story isn’t unique. I now know that 40% of women have dense-breast tissue and about 85% of them have no idea that they have it. Why? Because, until recently it has not been the medical standard to inform women of their breast density. So, the standard of breast health care has got to change and our mission is to spread awareness so it will change and therefore save lives. Mammography is not enough of an examination to see through dense-breast tissue. An additional exam such as an ultrasound, automated whole breast ultrasound or MRI, along with the mammogram, is what is needed for women with dense-breast tissue.
Our mantra is “Until there’s a CURE, find it SMALL. It’s the new BIg”. Today, there is technology that will find breast cancer when it is small, easier to treat and therefore, in most situations, eliminates the need for chemotherapy.
Have the radiologists at the RSNA conference been receptive to your message?
The reaction has been across the board. There have been radiologists who have told us, “I agree with your message. Keep up the good work!” Others have said, “There is still no clinical evidence to support your messaging.” All I could say was, “Look at our website under the “Clinical Data” tab and see if that doesn’t change your tune.” One told me that, “I don’t like the idea of alarming my patient with extra information.” I responded by saying, “What is more alarming, not informing a woman that she may have cancer that can’t be detected by the mammogram or, telling a woman that she has cancer and it is so advanced, that she needs a mastectomy…. as was my case?” On another positive note, we have been asked to have our site translated into Spanish, French, Italian and Portuguese. These doctors are grateful for the support and we want to provide it.
What is the role of the technologist concerning the dense-breast tissue message?
Other than the referring physician, the technologist is the most important person, who is in a direct position to educate women about breast density. Every breast centre is different. Some technologists are allowed to let a patient know her density at the time she is getting her mammogram and others will only allow a radiologist to inform her. Or, she needs to ask for her report from the radiologist. Regardless, the technologist can take less than two minutes to show her stock mammogram images that clearly show the difference between fatty tissue (clear, like a cloudless blue sky) and dense tissue (like a white cloudy sky) and how cancer (which always shows up as “white” on a mammogram) is easy to see in fatty tissue but in dense tissue, a white cancer, on a white background, is extremely difficult to see. The technologist can let the patient know that for dense-breasted women, there are additional exams such as ultrasound, automated whole breast ultrasound and MRI that can see more than the mammogram. The technologist is not her doctor so it is important that she inform the patient to have a conversation with her referring physician to determine what additional exam may be right for her. Mammography may still be the standard of breast care, but studies show that it misses over 50% of all breast cancers in women with dense-breast tissue. Women still need to have a mammogram, because it can detect calcifications that are not as well imaged on other modalities such as with ultrasound. However, studies also indicate that ultrasound, automated whole breast ultrasound and MRI find more cancers, and at a smaller size, than mammography. We have talked to a lot of technologists here and, overall they know that the standard needs to change to incorporate other technologies that will complement the mammogram and find what mammography doesn’t.
How are you planning to spread your message to all women in the country?
In 2015 we are launching a national campaign, starting in the state of Nevada. The campaign focuses on being a support system for all facilities, centres and hospitals that offer mammography. To do this, our goal is to provide breast density education to referring physicians, who send their patients to these facilities, centres and hospitals, and to the patients themselves. If the patient has learned about breast density she will know to ask her doctor about her own breast density. If the referring physician understands the need for an additional examination, for the 40% of his patient clientele, he will then focus on the clinical data and prescribe the most appropriate additional examination for each of his dense-breasted patients. In turn, the imaging entities will change their standard of care and begin offering these exams. Thus, the standard of care will change. Our desire is to be help and not a hindrance. Our goal is change from the cookie-cutter-one-size-fits-all status quo.
What is your view concerning the progress of breast density legislation in the United States?
It’s working! We completely support Nancy Cappello, PhD, who has now brought Breast Density Inform laws into twenty states. Because of Nancy’s efforts, two new insurance codes for additional breast ultrasound examinations (CPT 76641 and CPT 76642) when the mammogram is inconclusive, will go into effect in January 2015. A mammogram is inconclusive in such cases as with dense-breast tissue and implants. This is a huge step forward because there has not been insurance coverage in the past. We also know that legislation alone will not change the standard of care. That is why we want to support Nancy’s efforts through education at the level of physician, staff and patient.
What education materials do you offer?
Our website www.eachonetellone.com is a wonderful, easy to understand resource. It is loaded with information and the clinical data that supports it, that everyone needs to know about breast density. In 2015 we will have educational packages available for all breast imaging facilities, hospitals and centres. We also are available to provide a live presentation. We tailor our presentation to our audience. It’s educational, medically based and designed to empower.
Do you have a favourite quote?
“Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it’s the only thing that ever has.” – Margaret Mead. This quote defines who we are and how we will accomplish our goal of changing the standard of breast healthcare in this country. We will do it, one woman at a time.