Editor’s Note: This story has been update to reflect that Anne Favret, M.D. works at Virginia Cancer Specialists.
Nancy Zimini of Manassas, then 49, was surprised when the radiologist at Sentara Hospital asked to capture extra images of her right breast during her yearly mammogram. Eighty-five percent chance it’s nothing, she was told. “But there was this tiny gray-and-white cluster.”
Zimini agreed to a biopsy in which a needle extracts suspicious cells during a computer-aided mammogram or ultrasound. A senior vice president for Airports Council International, she was accustomed to weighing decisions quickly. So when the core biopsy showed ductal carcinoma in situ, or DCIS, a stage 0 noninvasive breast cancer confined to the ducts, she was clear. “Do whatever you need to get it out,” she said.
It was her two biggest jobs—as a single mother and a daughter to her elderly mom who had just lost her husband and a son—that would guide her decisions: She wanted to live for them. “I can’t go on thinking it could go into cancer,” she says. “Providing for my family has always been my No. 1 goal.”
Zimini is among the 12.4 percent of women diagnosed with breast cancer during their lifetimes. Not counting some skin cancers, breast cancers are the most common cancer in women, no matter race or ethnicity, the Centers for Disease Control and Prevention reports. Carcinoma in situ alone accounts for 60,000 cases a year, about 25 percent of breast cancer cases.
“When a person has a screening mammogram, they’re asymptomatic; there’s no palpable abnormality,” explains Tammy Lamb, M.D., a Sentara radiologist. “If we see these new calcifications developing or clustered together, or [if we] have what we call a dot and dash, we’re worried they’re not benign, good calcifications.” She says women in Northern Virginia are educated, understanding the importance of screenings comparing past and current films to reveal a new abnormality, “which means we’re finding breast cancers earlier … so we’re seeing a significant amount of women with DCIS.”
Stage 0, noninvasive
Why doctors advise treatment
Lamb tells how stage 0 noninvasive cancer can evolve: “[It] starts in the duct of the breast, the same duct where milk comes out, from a cell that looks normal. A cell that looks atypical or abnormal is next. Then you have definitely abnormal cells overgrowing within the duct—that’s ductal carcinoma in situ, changes happening within the basic unit of the breast, gland or tissue. Then if breaking outside of the duct, you get invasive, masslike lesions.”
The standard treatment for stage 0 is lumpectomy, radiation and, if the cells feed on estrogen, hormonal medication taken daily for five years. Yet because it’s uncertain whether DCIS will become an invasive cancer—it could just park in the ducts—there’s debate. A 2015 study published in JAMA Oncology involving 100,000 women with DCIS showed the risk of dying as low, with the 20-year-death rate at 3.3 percent. A subsequent Time story highlighted surgeons like Shelley Hwang, M.D., of Duke, an early breast cancer expert leading a clinical trial investigating if low-grade DCIS can be managed through active surveillance, “watching and waiting” through radiology. But until they gather more data to determine which cases can be managed this way, area doctors recommend treatment.
“We know some DCIS will never become invasive,” says Costanza Cocilovo, M.D., FACS, medical director of Inova Breast Care Center. “The problem is when I’m looking at a particular woman and she asks me, ‘Is mine going to become invasive?’ I don’t know … We don’t know which ones we overtreat … We follow standard of care, and as part of standard of care, some women end up being overtreated. Maybe that won’t be the case someday.”
Molly Sebastian, M.D., FACS, director of Reinsch Pierce Family Center for Breast Health at Virginia Hospital Center, says DCIS hasn’t figured out how to behave like bad, invasive cells—yet. Whose will turn? “That’s the $10 million dollar question,” she says. “The Hwang registry trial is trying to get at that.”
Most women opt for surgery; few want to risk cells going renegade, invading and metastasizing to organs. “This isn’t an absolute, but no one dies from DCIS,” says John Williams, M.D., FACS, medical director at Novant Health UVA Health System Breast Center in Haymarket. “But we have to do things to lessen the risk you’re going to develop a new, invasive breast cancer associated with your DCIS.”
Williams calls DCIS lesions precancerous and says they should be removed “to reduce the chance of it evolving into an invasive breast cancer that can threaten your life.”
Lamb agrees. “Some say half of carcinoma in situ won’t progress into invasive cancer,” she says. “The problem is imaging cannot tell the difference. Surgery cannot distinguish. More importantly, pathology is not yet there. Until you can distinguish based on the genetic makeup of that carcinoma in situ and tell me, yes, that’s not going to be invasive or a mass, what are you going to do? [Treatment] might be called more aggressive, but it decreases morbidity.”
Williams says patients often choose mastectomy if it’s a large area of DCIS or if they test positive for BRCA1/2 genetic mutations, but most want lumpectomy. “The idea is to remove DCIS out of the breast. Even if you get good margins around it, we know there’s going to be DCIS cells left we don’t know about. Radiation is offered after lumpectomy to lessen the chance of something growing back in that breast.”
Some women face additional surgeries, as did Zimini, who first had a lumpectomy and a one-shot radiation dose during surgery, an experimental procedure (standard radiation is six weeks). But when she saw her surgeon post-lumpectomy, she learned that margins were involved with DCIS. She’d need another surgery. “That’s the only time I cried,” she says. “I had a hospitalized daughter; my father had died; my brother had committed suicide. So here I am, in Generation X, taking care of parents and kids, so I need to make sure I’m healthy. So I said, let’s do the mastectomy.”
After losing the right breast, she didn’t peek under her bandage. Instead, she made plans for reconstruction and went to work, tubes hidden under her business attire. “This is how I get through setbacks, which I’ve had more than my share of in life,” she says. “The one thing that’s kept me strong is family and buckling down and getting lost in work.”
Surgery is crucial because in 10 to 20 percent of cases, pathology from surgery discovers invasive cancer, a microinvasion breaking through the duct, says Cocilovo. That’s a game-changer: These patients get “upstaged” to chemo.
Invasive ductal carcinoma, stage I
Maria’s story
Such was the case for Maria S. Breyer, a retired budget officer from Springfield. At 59, she’d had mammograms before, and a new spot meant a biopsy, then a DCIS diagnosis. She questioned: “Is that the right pathology? But my mom lived to 96 without medicine.” She consulted with Reinsch Pierce Family Center for Breast Health’s Molly Sebastian, who recommended partial mastectomy and radiation. “I was doubtful of cancer treatments,” Breyer says. “I thought they did more harm than good. I thought they were about money. I was tempted to not do anything after reading some articles online.”
She gave in to skepticism, traveling to Duke to consult with Hwang. But while Breyer wanted Hwang to suggest the surveillance trial, instead she suggested surgery because DCIS was risky.
Breyer researched more as she returned to Virginia, ultimately choosing to undergo the operation by Sebastian. “When she called me afterwards, [Sebastian] said, ‘I wish I had better news.’ She explained it was aggressive.”
Breyer was upstaged to invasive ductal carcinoma, stage I. Sometimes called infiltrating breast cancer, it had broken through the milk ducts and was invading nearby breast tissue. Eventually it could spread to lymph nodes. IDC is the most common form of breast cancer—over 240,000 will be diagnosed each year—and the key word is invasive. “Now there was no alternative,” Breyer says. She’d undergo another surgery, chemotherapy and radiation. It’s important to note here that some cancers start as atypical cells, stage 0, that become invasive, but other mutations might start as invasive cancer. Whether this DCIS went into stage I or was next to the IDC is unknown.
Breyer, who still goes to the hospital for medicine called Herceptin, finished chemotherapy in April. For three hours on Thursdays—“11 a.m., scheduled after traffic”—Taxol flowed into a port in her chest. Her hair started falling out two weeks later. She didn’t have nausea but broke out in an allergic rash around her cheeks, eyes and hands. She developed neuropathy, losing sensitivity at the fingertips; her nails turned purple and yellow. “Your nails look like you’ve smashed your fingers by slamming the door on them.”
Sebastian says: “Chemo, like Taxotere, is more like a shotgun, injuring unselectively rapidly dividing cells throughout the body. People lose their hair, feel they’ve been shot. Herceptin is targeted to the HER2 feature [of the cancer]. It’s like you kill breast cancer with a shotgun and send in heat-seeking missiles towards the HER2; it’s more effective.”
Breyer then completed 16 whole-breast irradiations and three targeted sessions in May.
“I’ve been doing well, accepted my diagnosis [and am] able to get through it with faith and loved ones around me,” she says. “I went through my days fine. But at night, when I prayed, I cried … When I got down onto my knees, that’s when I broke down. But I never thought I was a victim.”
She didn’t want loved ones to worry or to pity her, so she tried to make them comfortable by day. Buoyed just by their presence—her sisters visited from abroad—and with chemo and radiation in the rearview mirror, Breyer now feels fortunate. “[I’m] lucky it was caught in time,” she says. “I have health insurance, people who supported me, wonderful doctors. [I’m] lucky to be alive.” She adds: “When you think of other things that happen in the world, this is nothing compared. Like children who have cancer, why do they have to have cancer?”
She wonders what would have happened if she had forgone the lumpectomy. “No one wants to think, ‘Why didn’t I take care of this?’ At the same time I feel cancer treatment is primitive, but if I hadn’t done anything, what would’ve happened? Would I be a stage 4 this time next year?”
Invasive ductal carcinoma, stage II
Stacy’s story
Stacy Grace-Moore of Alexandria remembers heeding an instinct to schedule her annual mammogram. Browsing in a Lord & Taylor near her attorney’s office—she was waiting on her will after recently getting married—she saw swimsuits.
“I better wait to buy one until after my mammogram,” she thought. She didn’t know why. She was 51, with no lump—“I even had a placard in the shower reminding me to do my exam.”—just a sense of foreboding. She scheduled the appointment and was shocked when the radiologist told of troubling images on the left side.
“I was calm but stunned because there hadn’t been any history of breast cancer in my family, and I was a very healthy person, active, exercised, ate well, not excessive in anything,” she says.
An assistant federal security director for TSA, she was at her desk at Reagan National Airport the day after an “excruciating” biopsy when her phone buzzed. “Stacy,” her OB/GYN said. “You have breast cancer.”
As a former air marshal, crisis management was her middle name. “I thought, ‘Let me approach this the best I can,’” she says. “I’d never been hospitalized, never [had] any diseases. I thought if it was, well, I’ve had a pretty good life.”
She flew into action, researching. She found oncologist Anne Favret, M.D., at Virginia Cancer Specialists, who offered a roadmap. Favret tore a piece of the tissue paper off the exam room table, drawing, jotting facts. Grace-Moore still keeps this paper explaining her invasive ductal carcinoma, stage II. Favret wrote:
Tumor size-4.5, Estrogen +. Chemo surgery,
lumpectomy radiation arimidex pill for 5 years
Chance of cure: >90%.
“She said, ‘You can do this; this is how we’ll treat.’ She wasn’t giving me fantasy, just prognosis,” Grace-Moore says. She bought books like Dr. Susan Love’s Breast Book, feeling empowered to face chemo, planned first to shrink the tumor before operating.
“I remember the odor of the chemo office—it’s strong,” Grace-Moore says, recalling a grueling four months: Mondays, Tuesdays and Wednesdays she went to work; Thursdays she had chemo treatments of Taxotere; Fridays she took Neulasta medicine; and Saturdays and Sundays she recovered on the couch.
“I felt like my body was lead, with no ability to concentrate, not even to watch TV. My taste buds made everything taste like metal. I was gaining weight, filled up with fluid,” she explains.
The day of her second chemo session, she awoke with 80 percent of her hair on the pillow. Grace-Moore walked into a barbershop, and a female barber stepped forward to shave her head. “My eyelashes were out; my face was swollen. She knew exactly what was going on,” she says.
At first, Grace-Moore used a wig—but after the workday was over, she’d remove it in the employee parking lot, feeling liberated. “I know, though it was never said, my employees were picking up the slack for me,” she says. “No one ever mentioned anything about how I looked, and there were days I was so swollen and my coloring off. They acted like it was normal.”
The mass shrunk, and Grace-Moore underwent a lumpectomy and lymph node dissection, showing the cancer hadn’t spread. She then endured 34 rounds of radiation at Inova Hospital Alexandria, with her last session on Valentine’s Day. “They had these little bags of chocolate and a patch with a red and pink heart on it. When I got back to work, I pinned the patch near my credenza. I was so thankful.”
Looking ahead
That was seven years ago for Grace-Moore. She retired from TSA, that patch the last item she took down in her office. She shares her experience to help others as she looks forward to the 10-year cancer-free mark. Breyer’s prognosis is excellent; she’s grateful it was caught early. Zimini not only has a good prognosis but also a new joy. While recovering from the mastectomy, she found “the love of her life” and recently married. She’s had reconstruction, and feeling in her breast returned, though the nipple is still numb. A two-year survivor now, she jokes that, though they’re not perfect, her 50-year-old breasts were replaced by two 25-year-olds. All three women feel at peace with their decisions and thankful for help from doctors, nurses, survivors, family, friends and co-workers.
“We think of breast cancer as a cellular phenomenon; cells forget how to die and keep on replicating. They go through a bunch of doubling to get to a size we can see in mammogram,” says Sebastian. “We tout mammograms as the best tool for finding it early, and they’re not perfect. But when we find it small—as early as 4 or 5 millimeters we can now see, thanks to 3-D—the prognosis is great.”
Offers Zimini: “If you’re fortunate to end up like I did [with] early detection, do what you have to to live the rest of your life. Life can be tough, but trust who you’re with. We need to come together in believing trained people can help us. You can’t do it alone.”
The women agree on one more note about ductal carcinomas. That mammogram—the routine one—shocked them. But it also saved their lives.
Notes:
Kristine Meldrum Denholm is an award-winning journalist based in Gainesville who covers health, psychology and parenting issues.