No medical doctor or technician ever told Cindy Bevington Olmstead what it meant to have dense breast tissue or that it was a matter of life or death.
Olmstead, 60, would find out the hard way after three years of repeated testing and a biopsy – all showing no tumors – culminated in the emergence of an egg-sized, cancerous lump on her breast.
That’s when she found out that mammograms are not accurate at finding cancers in the 40 percent of women with dense breast tissue. “I did everything I was supposed to do, everything they tell you to do,” Olmstead said.
Olmstead, a freelance reporter and researcher who lives north of Angola, is part of a soon-to-be released documentary called “Happygram,” which focuses on the ineffectiveness of mammograms for women with dense breast tissue.
A happygram is a letter clients usually receive 10 to 12 days after a mammogram, confirming negative test results that showed no suspicious lumps or masses.
The main cause of false-negative results – a normal mammogram even though breast cancer is present – is breast density, according to the National Cancer Institute. Overall, screening mammograms miss about 20 percent of breast cancers that are present at the time of screening and false-negative results occur more often among younger women than older women because younger women are more likely to have dense breasts, according to the NCI.
As one ages, the tissue becomes more fatty, less dense and false-negative results become less likely, so mammography can help reduce the number of breast cancer deaths in women ages 40 to 70, according to the NCI.
Olmstead made it clear she is not dismissing mammogram screening.
“It’s important to know that if you have dense breasts, you can’t categorically say mammography is the only test for breast cancer or that one treatment is the only treatment,” Olmstead said.
The full-feature film “Happygram” was directed by Julie Marron, 45, founder of the Institute for Health Quality and Ethics, in Providence, R.I. In the film, Olmstead, the only featured Hoosier, shares her story along with those of other women, including institute board member Hallie Leighton.
Leighton was 39 when she got a mammogram screening because of a strong family history of cancer. In the film, Leighton displays a letter from her radiologist stating, “We are pleased to inform you that the results of your mammogram are normal.”
Happy to get the letter, Leighton did not realize the mammogram had missed cancerous tumors of significant size in both breasts that had already spread to other parts of her body. She had extremely dense breast tissue but was unaware of what that meant, even though she was well-educated, Marron said.
Leighton died in April at the age of 42.
The film was produced in collaboration with the institute, which advocates self-determination, informed consent and open access to research.
A special task force is working state-by-state to enact laws to inform women of the effect density has on early detection. About a dozen states have passed such a law thus far, according to the AreYouDense.org website. Many of the women who are traveling the country and meeting with legislators to change laws are themselves victims of breast cancer.
“It’s really quite tragic,” Marron said. “These women are fighting for the rights of others and are, at the same time, fighting for their own lives.”
It has been an uphill battle, Marron said. An enormous – and profitable – industry has grown around breast cancer, she said.
The U.S. Preventive Services Task Force took a lot of heat and debate still surrounds its 2009 recommendation against mammography for women in their 40s, along with biennial screening for those ages 50 to 74, Marron said.
“This was a recommendation by an independent panel not involved in the industry, but most cancer and radiology societies have continued to push for yearly screening,” Marron said.
Medical professionals have known for decades that for the 40 percent of women with dense breast tissue, the effectiveness of mammograms is greatly reduced, she said.
The task force said the recommendations were aimed at reducing harm from overtreatment, but others disagreed. The American Cancer Society continues to recommend women receive a baseline mammogram by age 40 and annual mammograms after that.
Some members of the medical profession and breast cancer organizations have refused to listen or have chosen to sit quietly on the sidelines, Marron said.“The issue is highly politicized,” she said.
Marron hopes the film will empower women.
Now in the final stages of editing, the film will be released in the first quarter of next year. In addition to community movie theaters, it should also be available on other venues, such as cable TV and streaming video, Marron said.
Another local woman and breast cancer survivor, Carrie Barcus, 42, was instrumental in getting Indiana laws changed regarding cancer screening for women with dense breasts.
Barcus, a nurse at Parkview Whitley Hospital, was angry after mammograms failed to reveal a cancerous mass in her dense breast tissue. She knew something was wrong, but insurance companies would not pay for further testing, including a more reliable ultrasound screening. By the time she got the tests she had insisted on, the tumor was the size of an egg and cancer had invaded other parts of her body.
Because of her efforts, state law now requires health professionals to educate women on the limitations and standards for annual screening or diagnostic tests of those with high breast density. It also requires health providers to ensure coverage for certain services for women with dense breast tissue such as an ultrasound or MRI.
Barcus was proud of the overall end result but was not in favor of a clause added by lawmakers that restrict the mandated health provider coverage to women 40 and older. She was 40 when her cancer was discovered.
The clause was probably a necessary component in order to get the law passed, said Senate President Pro Tem David Long, R-Fort Wayne, who worked with Barcus at the state level.
“Legislation is a compromise,” Long said. “We went above and beyond what Carrie asked for, which was to supply information and mandated health coverage.”
The law is now being used by other states as a model, he said.
‘The gold standard’
Early detection is key when it comes to treatment and survival, said Olmstead’s oncologist, Dr. Dennis Citrin of the Chicago-based Cancer Treatment Centers of America, one of five such centers in the U.S.
Many breast cancers react well to treatment, but that treatment is many times delayed due to misdiagnosis or false-negative results, he said.
Citrin, whose specialty is breast cancer, said dense breast tissue is common in women younger than 50 or in older women who take hormone replacement therapy. Everyone should know the limitations of mammograms, particularly women with dense breasts, he said.
“The gold standard (test) is the ultrasound,” he said.
Citrin has penned a book, “Knowledge Is Power: What Every Woman Should Know About Breast Cancer,” chronicling the lives of several of his patients, including Olmstead. The book will be available in late December on Amazon.com.
A small speck on Olmstead’s mammogram in 2008 prompted a flurry of tests, including mammograms, ultrasounds, an MRI and a biopsy. And in every case, medical personnel assured Olmstead that the speck was nothing to worry about.
During the biopsy, as she lay on the gurney, Olmstead heard the doctor say, “I can’t see what I’m doing – the breast tissue is so dense.”
It was the first time she had heard the term.
“I had written two stories about breast cancer and had never heard of dense breasts,” Olmstead said. “I was humiliated, thinking I was too fat for them to find anything.”
Two weeks later, in the exact location of the biopsy incision, Olmstead was horrified to find a walnut-sized lump. Her doctor explained that it was probably a hematoma caused by surgery.
Two years and several false-negative mammograms later, with the lump still prominent, Olmstead had an ultrasound-guided biopsy in the surgeon’s office.
A few days later Olmstead had her worst fears confirmed – she had breast cancer.
Olmstead opted for a mastectomy with no reconstruction. After surgery, Olmstead prepared for six to eight months of chemotherapy followed by six to eight weeks of radiation. She purchased soft pillows and organized a “sick area.” During that time she saw an ad for the Cancer Treatment Centers of America.
“I thought, ‘Why not get a second opinion?’ ” she said.
In December 2010, at the Chicago center, a series of tests showed that Olmstead’s particular cancer – invasive lobular carcinoma – would not benefit from chemotherapy. Doctors mapped out a new treatment plan.
Olmstead urges women to know their bodies to find out whether they have dense breast tissues.
“A palpable lump in the breast should always be followed by an ultrasound,” she said. “Ask questions, research and know the options and your own personal protocol for treatment.
“It’s your body, your breasts and your life.”