Lisa Frost smiles as she walks into a doctor’s office on the campus of Shady Grove Medical Center and settles into a waiting room chair. The Rockville mother of four is used to this kind of appointment—she’s been coming to see her oncologist every three months for the past few years. She doesn’t seem too concerned about the reason she’s here: to discuss the chest pains she’s been having, which might mean that her cancer has returned.
In November 2011, a few weeks after her 46th birthday, Frost learned that she had an advanced form of breast cancer, despite years of judicious mammogram screening. For the next 19 months, she underwent a grueling series of treatments and procedures, including a bilateral mastectomy, chemotherapy and radiation, as well as reconstructive surgeries fraught with complications. Since then, Frost has shown “no evidence of disease,” a term many patients use instead of saying they’re “cancer-free.” But any peculiar discomfort warrants investigation, because the type of breast cancer she has—invasive lobular carcinoma (ILC)—can resurface in other parts of the body.
“It could be nothing,” Frost says as she waits to see the doctor one morning this past February. “Actually, it’s probably nothing.”
Shortly after her diagnosis, Frost asked her breast surgeon about the chances her cancer could come back. “Do you really want to know the answer to that question?” she remembers him saying.
Well now I don’t, she thought.
A former pediatric nurse, Frost understands the odds—she’s since been told that there’s a 50 percent risk of recurrence. But she won’t let herself get stuck on the numbers, even at a time like this. “Of course my cancer fears crop up, but I don’t dwell on them,” she says. “I refuse to freak out until it’s time to freak out.”
* * *
Frost started getting mammograms when she was in her 30s, in addition to checking her own breasts for unusual lumps, and always assumed she was doing enough. Though breast cancer runs in her family, she’d been told she wasn’t considered “high risk,” in part because both her mother, who had an early-stage noninvasive cancer, and her grandmother developed the disease after menopause. (Her mom was 60; her grandmother, who died of breast cancer, was 70. Two of Frost’s aunts also were diagnosed after menopause.) Still, Frost harbored doubts, so she discussed her family history with her OB-GYN and decided to start mammogram screening at 35, even though many women of average risk begin at age 40.
“To me, early mammograms just made sense,” she says.
Frost learned through a mammogram report that she had dense breast tissue—an estimated 50 percent of American women do—but wasn’t sure what that meant and assumed the term was part of the routine medical language shared between a radiologist and a doctor’s office. She didn’t realize that having breasts with a lot of fibrous and glandular tissue can make mammograms harder to read; she says nobody explained to her that a cancerous mass can blend in with dense tissue. “I never knew it made cancer detection more challenging,” she says.
Frost, now 50, says she didn’t know that because she has dense breasts she might benefit from extra screening. According to the American Cancer Society, studies have shown that ultrasound and magnetic resonance imaging (MRI) can help find breast cancers that can’t be seen on mammograms. But those tests also can lead to false positive results and unnecessary biopsies, and unless a woman is at high risk for breast cancer, insurance may not cover them. Year after year, Frost’s mammogram results were normal, despite a few occasions when she was called back for more tests. “Even then, I didn’t give it much thought,” she recalls. “I went back for more mammograms and an ultrasound, and it turned out to be nothing.”
With four daughters and a job in the pediatric emergency department at Shady Grove Medical Center, Frost was too busy to worry about breast cancer, she says. At the time of her diagnosis, her girls—ages 9, 12, 16 and 17—all went to different schools. “We had one at Wootton, one at Frost [Middle School], one at Travilah Elementary and one in private school,” she says. “That’s four back-to-school nights, four separate schedules.”
Frost's older daughters are now in college.Lauren (center) is a senior at the University of Baltimore; Jodie goes to St. Mary's College of Maryland.
Frost had regular checkups with her gynecologist, who never felt anything unusual in her breasts, she says. If she noticed something odd during a self-exam, she’d ask her husband, Mitch, a general surgeon, to feel it. She and Mitch, who’ve been married for 24 years, met in 1990 when she was working as a nurse at Children’s Hospital in D.C. and he was finishing his pediatric rotation. “Admittedly my breasts are pretty lumpy in nature, which made it difficult for me to detect something out of the ordinary,” Frost says.
In the fall of 2011, Frost realized she was a month behind on her annual mammogram, and the news of a longtime friend’s breast cancer diagnosis spurred her to set up an appointment. When the mammogram technician lifted Frost’s left breast to place it on the clear plastic plate, the woman immediately said she felt a mass. She hadn’t even taken the first image. “I couldn’t believe it,” Frost says. “I didn’t think she knew what she was talking about. I would know if I had a mass in my breast—it simply wasn’t possible. But the technician said, ‘I cannot in good conscience let you leave today without getting a diagnostic mammogram.’ ”
A diagnostic mammogram, which is different from a screening mammogram, includes views of the breast from several angles and can magnify a suspicious area. Women don’t have to wait for their results—radiologists review the images while patients are still in the office. The results of that mammogram, along with an ultrasound, confirmed that Frost had breast cancer. And the misshapen appearance of the lymph nodes under her arm, visible via ultrasound, suggested an invasive form of the disease.
“I wasn’t crying—I was in disbelief,” Frost recalls. “I was just going through the motions.” She brought the films home to give to Mitch, and they clearly showed cancer. “That afternoon, and a couple of weeks later when the biopsy results were in, I was still in denial.”
Within days, Frost’s focus shifted from work and family to biopsy and MRI results, second opinions and treatment options. “Cancer becomes a second job,” she says. “I had this folder that I carried everywhere, with my biopsy reports and findings.”
A biopsy confirmed that Frost had ILC, a type of cancer that begins in the milk-producing glands of the breast and is more difficult to see on a mammogram than ductal carcinoma.
“With the more common ductal cancer, there’s frequently a more distinct mass detected through exam or mammogram,” says Frost’s oncologist, Dr. Joseph Haggerty, medical director of the Shady Grove Adventist Aquilino Cancer Center. “But with lobular, the cells percolate out. We call it ‘single filing,’ because they branch out or spread like tendrils. That’s why lobular is so difficult to diagnose early, even with ultrasound and MRI.” Eventually, a mass does form, as the technician detected, but it feels more like a thickening of breast tissue and isn’t as firm as a ductal tumor.
About one in eight women in the U.S. will develop invasive breast cancer in their lifetime, and about 10 percent of the approximately 250,000 cases of invasive breast cancer diagnosed each year are lobular, according to Breastcancer.org. Based on the size of the tumor and the number of lymph nodes involved, Frost’s oncologist determined that her cancer was stage 3C. It had likely been growing undetected for years.