A Rockville Mother's Battle with Breast Cancer
With four daughters counting on her, Lisa Frost chose to stay positive in the face of adversity
Frost dodged some of chemo’s other common side effects, such as sickness and nausea, but after two months she developed numb, tingly sensations in her hands. “I felt like my hands were on fire,” she says. “It got to the point where I couldn’t use them at all.” Mitch bought itch- and pain-relieving creams, lotions and sprays, but none of them eased her discomfort. He eventually found special gel gloves made for chemo patients to prevent nerve pain. “They’re stored in the freezer, and I’d sit with these huge mitts on my hands,” Frost says. “They gave me some relief.”
By the end of June 2012, Frost was finished with chemo and began daily 20-minute radiation sessions to destroy any cancer cells that might have escaped the scalpel and drug regimen, or migrated elsewhere in her body. For Frost, the radiation was more unnerving than the chemotherapy. “When you work as a nurse, you’re taking X-rays and leaving the room until you hear the beep,” she says. “You’re conditioned to think about the harms of exposure. And there I was lying totally exposed on a table for 20 minutes while this machine rotates around, blasting you with radiation. I saw when other patients came and went, and I knew that I was there longer, getting more radiation than others.”
That July, Frost developed lymphedema—a collection of fluid that causes mild to severe swelling in the arms and/or legs—which resulted from the removal of her lymph nodes during surgery. The morning after playing volleyball with her daughter Jodie, Frost awoke to find her left arm and hand swollen like a balloon. Physical therapy, compression garments and bandages helped, but lymphedema is a persistent problem for her, and possibly a lifelong side effect of cancer treatment. Frost underwent several other surgeries in late 2012, including the removal of her ovaries. Haggerty says the procedure was important because Frost’s cancer was estrogen-positive. “That means estrogen can feed cancer cells,” he says. “And although you’ve done chemo and radiation, if there are potential cancer cells elsewhere, in the liver or bone, you don’t want estrogen nourishing those distant cells.”
December 2012 should have marked Frost’s final surgery—another lengthy procedure to harvest tissue from one part of her body to help reconstruct her left breast—but she suffered a rare complication when the blood supply to the tissue was compromised. Surgeons tried to complete the procedure with a blood vessel extracted from her leg, but that also was unsuccessful. Frost says the failed operation was the hardest part of her cancer battle.
“It was the procedure you look forward to, because it represented closure and a return to normalcy,” she says. “It was supposed to be the finish line. And when it failed, it was horrible.
Of course you’re happy to be alive—the goal is always to stay alive—but on the other hand, you’ve gone through 12 hours of surgery and you feel like you’re missing more parts than when you started.”
In the following months, additional surgeries using an implant also yielded poor results. The wound site never healed, so finally, in June 2013, Frost was anesthetized once more to have the implant removed. She now uses a prosthesis. “Which I hate,” Frost says. “It’s just one more thing to deal with, and I hate buying special bras and bathing suits with pockets made to accommodate a prosthetic breast. But since I have one reconstructed breast, I need the prosthetic to balance it out, to prevent back pain and other problems.”
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In the five years since her diagnosis, Frost has written blog posts for breast cancer websites in the hopes that her experiences might help other patients. On CureDiva.com, a site that offers products such as wigs and bras for breast cancer patients, Frost blogged about the side effects of cancer treatment and the vulnerability she felt when the bevy of scans, X-rays and tests tapered off. But she’s most concerned about helping women understand that dense breast tissue can obscure malignancies in mammograms, something she wishes she’d known.
“Women believe that they’re covered if they get a regular mammogram,” Frost wrote in a post on former Good Morning America host Joan Lunden’s website. “They think that breast cancer isn’t going to sneak up on them. But not all breast cancers start as lumps. Not all cancers are picked up on mammograms. Some women need ultrasounds or MRIs. And those with dense breast tissue should know that they have it, and should ask their doctors more questions.”
In 2003, a Connecticut woman with dense breast tissue was diagnosed with advanced breast cancer despite years of normal mammograms. Six years later, thanks largely to the woman’s advocacy, Connecticut became the first state (27 have followed) to pass legislation requiring physicians or radiology practices to notify patients if they have dense breast tissue. Connecticut, New York, New Jersey, Indiana and Illinois require insurance providers to cover additional ultrasound screening for women with dense breasts, but most states simply have to notify the patient. According to diagnosticimaging.com, a website that maintains an interactive map identifying breast density legislation by state, Maryland’s law requires a mammogram report to say, among other things, that “dense breast tissue can make it harder to find cancer on a mammogram and may also be associated with an increased risk of cancer.” Some women, however, fail to notice this line once they’ve read the part of the report that says their results are normal. And those who do read it might not understand the language. A 2016 study in The Journal of the American Medical Association found that some states use complex language that exceeds the average reading level, leaving patients ill-informed.
Colette Magnant, a breast surgeon and director of the Sullivan Breast Center at Sibley Memorial Hospital in Washington, D.C., says dense tissue awareness can serve as an advocacy tool for patients. “For someone who is at average risk but also has family members with breast cancer and has dense tissue, it might initiate a more detailed discussion with a doctor,” says Magnant, who did not treat Frost. “The patient can advocate for herself and the OB-GYN can consider whether it warrants increased attention.” Should an oncologist or gynecologist request an additional test that isn’t covered by insurance because a patient isn’t technically “high risk,” the doctor can speak directly with the insurance provider and make the case for that procedure to be covered.
“I frequently talk to breast cancer patients, but they already know about dense tissue,” Frost says. “The challenge is educating women who don’t have breast cancer and don’t visit breast cancer websites. How do you reach those people?”
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When Frost met with Haggerty this past February, he ordered a PET scan, an imaging test that looks at tissues and organs throughout the body. The results were normal, and the chest pain she was having went away on its own.
These days, Frost doesn’t blog as much, but she still counsels friends, and even strangers, who are looking for advice. Friends and relatives will refer women to Frost, and they’ll reach out to her with questions about shopping for a wig or choosing a breast prosthesis. Most patients ask her what to expect with chemotherapy. “That’s the thing they are most fearful of,” she says. “The first thing I always tell them is: ‘Don’t expect to be sick.’ I kept waiting to be sick and it never happened. Doctors tell you what might happen with chemo, but it’s not a certainty.”
Other patients simply want to talk, or vent about their own experience with breast cancer. “I can tell them that I totally know how difficult it is,” Frost says, “but that it is going to get better.”
Frost’s daughter Lauren, who once distanced herself from her mother’s cancer, thinks about it now more than ever. “My mom turned something terrible, something deadly, into something so positive,” she says. “By having this disease, she’s connected with so many other women and helped them.”
While Frost has considered returning to pediatric nursing, she’s currently volunteering part time in hospice care. Helping terminally ill patients might seem like an especially tough role for a woman who has so closely faced her own mortality, but Frost doesn’t see it that way. “Knowing my skill set as a nurse, it’s a natural fit,” she says. “My cancer isn’t part of the conversation. I don’t focus on that when I’m helping hospice patients.”
That’s not to say that it’s ever too far from her mind. She feels survivor’s guilt when she loses a friend to breast cancer; three have died of the disease. And all her positivity can’t tamp down those dark moments when a news story or a song triggers thoughts about the possibility that her cancer might come back. But even then, she maintains a sense of humor. “Just the other day I heard this song and it made me think about dying. Usually the feeling doesn’t last that long. What was the name of that song?” Frost says as she reaches for her cellphone and scrolls through a list. “Oh, here it is. The song was ‘(Don’t Fear) the Reaper.’ Yeah, that got me thinking. And I had a checkup that day,” she says with a grin.
In April, Frost “graduated” to oncology checkups every six months. A few weeks later she participated in the weekend-long Avon 39 breast cancer walk in Washington, D.C. “It felt awesome,” she says. “Four years ago I didn’t know what my future held, but there I was at this event. I did the walk because I could. Because I’m living my life.”
Tomosynthesis, or 3-D mammography, provides radiologists with a clearer picture of breast tissue.
Hard to Find
Dense breast tissue can mask tumors on mammograms, making cancer more difficult to detect
Before she was diagnosed with cancer, Lisa Frost, like many women, didn’t know that dense breast tissue can make mammograms harder to read. On an X-ray, fatty breast tissue appears dark and transparent, providing a contrast to the white hue of cysts and tumors. Dense tissue, however, appears white, which can mask tumors. According to the National Cancer Institute, the main cause of false negative mammogram results—which occur when findings are normal despite the presence of breast cancer—is high breast density. A 2007 study in the Journal of Surgical Oncology examined false negative mammogram results and found that 78 percent of these cases occurred in women with dense tissue.
“X-ray beams have a harder time penetrating tissue that is dense,” says Dr. Pouneh Razavi, director of breast imaging at Sibley Memorial Hospital in Washington, D.C. Breast density has nothing to do with the size of a woman’s breasts, or how they feel during a self-exam. It’s only discernible through mammography. According to the Mayo Clinic website, “about half of women undergoing mammogram testing have dense breasts.” While it isn’t clear what causes dense tissue, research shows that younger women—those in their 40s and 50s—are more likely to have dense breasts because tissue becomes less fibrous and more fatty as women age. Breast density also can be inherited. Women with dense breasts may have a higher risk of developing breast cancer.
In 2011, the year Frost was diagnosed with invasive lobular carcinoma, the U.S. Food and Drug Administration approved a new technology known as tomosynthesis or 3-D mammography as an adjunct to conventional mammograms. Initially, few women were offered tomosynthesis (it was not available to Frost), but in recent years it has become more widely accepted as a way of providing radiologists with a clearer picture of breast tissue. Unlike conventional 2-D mammograms, which produce one image of overlapping tissue, tomosynthesis arcs over the breast to take multiple, thinly-sliced images from various angles. These slices create a 3-D image that may reveal an abnormality potentially concealed by overlapping tissue.
Dr. Pouneh Razavi, director of breast imaging at Sibley Memorial Hospital
“We’ve seen a significant improvement with 3-D because it allows our breast radiologists to examine one millimeter layer at a time,” Razavi says. “It cut the rate of false positives, reducing our recall rate [for additional screening], and has helped identify cancers not detected on standard digital images.” Some insurance providers still don’t consider 3-D mammograms medically necessary for breast cancer screening, and patients may pay a $50 out-of-pocket cost for the procedure.
Will 3-D mammography make it easier to find cancers in women with dense breasts? Some say it’s too early to tell, but a 2014 study presented at the annual meeting of the Radiological Society of North America found that the detection rate in 132 breast cancer cases was 80 percent when using 3-D mammography, compared to 59 percent with conventional mammography.
Experts are also exploring other screening options that may benefit women with dense breasts, including Fast MRI, a modified version of magnetic resonance imaging. MRI technology provides an image of the breast’s vascular system and can be used to detect increased blood flow to and from a tumor. Although Fast MRI involves fewer pictures, studies show that it’s comparable to standard MRI technology in detecting tumors in breasts. Because Fast MRI requires less time, it would be less costly. Should radiology practices offer this service, it may become a viable option to women seeking supplemental screening.
Longtime Bethesda resident Joanne Meszoly (www.joannemeszoly.com) now lives in Dickerson, where she blogs about farm life.