When Nancy Cappello, Ph.D., passed away on Nov. 15, 2018 at 66, she left the world a better place for millions of women with dense breasts. She was the founder and unstoppable force behind the highly respected nonprofit organization "Are You Dense?" which is actually two entities: Are You Dense?, Inc. and Are You Dense? Advocacy. Her activism around breast density notification laws resulted in legislation for more complete disclosure of density in 36 American states, a move that saves lives.
Donna Marie Johnson, president of the Are You Dense? board of directors, and the community relations liaison for a private radiology practice, now carries the banner for Are You Dense? along with other volunteers and board members. She spoke to HealthCentral in a telephone interview about the lasting effects of Nancy's work and the objectives yet to be accomplished.
HealthCentral: Donna, can you give us the basic facts around dense breasts and why it's so important that we women understand whether we have them?
Donna: As background, dense breast tissue is comprised of more connective/fibrous tissue and glandular tissue than fat. It "tricks" mammography by appearing white, just like cancerous tumors. At Are You Dense? we know that dense breast tissue:
- Exists in 40 percent of women
- Causes mammography to miss every other cancer in dense breasts
- Predicts breast cancer risk, exceeding family history, and raises risk four to six times
Early detection is so important. Assume nothing after your mammogram. Request your mammography report from your referring doctor and the radiologist—not a form letter. If you live in one of the 36 states noted above, you'll be told that you have dense breast tissue if you do have it. You may then undergo an ultrasound or breast MRI for further analysis. Before you go for your mammogram—which ideally should be done by a tomosynthesis, three-dimensional (3D) machine if you already know you have dense breasts—check with your insurance carrier to determine whether they will cover 1) a 3D mammogram and 2) the ultrasound or breast MRI. Laws vary by state.
HealthCentral: We know it's not easy for you to talk about, but would you tell us about Nancy's death? It was a surprise to so many.
Donna: Nancy had 11 normal mammograms for more than decade. In 2003, she had her mammogram, and six weeks later, went to her OB/GYN who "felt something" in her breast after a routine exam. That something turned out to be stage 3 cancer that had metastasized in 13 lymph nodes. Because she had dense breasts, if she had only had an ultrasound earlier in her life, things might have been different. She had a mastectomy and both aggressive chemotherapy and radiation, and she eventually survived her cancer.
She did two miles a day on her treadmill every day, and in September of this year, she got on it and said, "I can't do this today." And the same thing happened the next day. She went to the hospital and was admitted, underwent a bone marrow biopsy and was diagnosed with myelodysplastic syndrome or MDS, a blood cancer. It resulted from her previous cancer treatment. A perfect match was found for a bone marrow transplant, which was supposed to happen this December, but she contracted an infection with Clostridium difficile, went into septic shock, and died.
HealthCentral: Nancy spread the word about breast density, and she and you both saw some of the positive results. Now you have research to back it up. Tell us more.
Donna: A study, reporting on a national survey and published in October 2018 in the Journal of the American College of Radiology, confirmed that density reporting laws are associated with increased breast density awareness and higher rates of conversations between women and their providers about additional screening. We also learned that nearly 90 percent of women, regardless of density law status, want to know their breast tissue type.
HealthCentral: Not everyone in medicine has said that additional screenings are such a great idea. Why?
Donna: Some doctors said, "We don't want to alarm women," by telling them they have dense breasts or suggesting additional screenings. Do they think women are frightened by the information? I think maybe it shows a lack of respect for women.
HealthCentral: What can women do who need a 3D mammogram or additional screenings with ultrasound or breast MRI, but their insurance doesn't cover it and they can't afford it?
Donna: There are multiple organizations out there that will provide screening support. We even have a fund in my office that we call "Pink 4 All" that helps women in our office pay for their screenings. Multiple foundations are connected to hospitals, and these help women get their screenings. Some imaging centers have a specific day each year when they provide free screenings. We help at Are You Dense? by donating to certain organizations that provide mammogram help. Go to the Susan G. Komen website and scroll down to "Low-cost and free mammograms" at the bottom of the page.