"There's something here," my radiologist said during my annual mammogram. Those three words sent a ripple of fear through me—and ushered in a year of upheaval. As she described "new and unstable microcalcifications" in my left breast, my mind darted to cancer. At age 47, I was willing to do anything to stay a mom to my three kids, so I agreed to a stereotactic biopsy.
Within a week, I was lying on my stomach, my breast through a hole in the table, cringing through a core biopsy. After a local anesthetic, my doctor extracted a sample of these "unstable" cells with a needle, guided by another mammogram. Then she placed a metal clip the size of a seed inside my breast to mark the spot. Days later, she called with three more scary words: atypical ductal hyperplasia.
"It's not cancer," she assured me, when I said the inevitable "What?" Atypical hyperplasia, she explained, is an overgrowth of cells lining the ducts (ADH, atypical ductal hyperplasia) or milk glands (ALH, atypical lobular hyperplasia). It's found in about 5% of breast biopsies. Unfortunately, just because it wasn't cancer didn't mean I was in the clear, as ADH could stay the same, turn into non-invasive cancer or become invasive. ADH and ALH are cancer markers. They put you at a higher risk for the disease. Since we'd only sampled the tissue, she advised that a breast surgeon remove the entire area in an excisional biopsy, checking for cancer nearby.
With a barrage of questions (Benign precancer? Almost cancer? What do I do with that info?), I turned to Google, learned about ADH and selected a hospital and surgeon. On the morning of the surgery, I underwent a wire localization procedure. Guided by more mammograms, a radiology resident numbed my breast, then placed a wire in it, leading to the clip. "This seems medieval," I mumbled during the wire threading, before they took another X-ray to check that it was properly placed. It wasn't. Seriously? He re-did it as I shut my eyes, adding this to my new list of Things You Don't Want to Do with Your Breast. Soon I was wheeled into surgery. One week—and a two-hour wait in the exam room—later, I got my results. "Not cancer," my surgeon confirmed. "But ADH puts you in a gray zone."
She ordered a follow-up mammogram in six months. Meanwhile, I concocted a plan to ward off cancer, for my "risk factor" to stay harmless. Neither overweight nor a smoker nor someone with a family history of breast cancer, I prioritized a healthier diet. A devout doughnut lover, I switched from occasional raspberry-filled treats to eating actual berries. I kept my book-club-authorized glass(es) of Cabernet but drank more water with lemon as well as organic milk daily. I'd always been a walker, but I switched to running when I read an article touting survivors' benefits. I ate more Brussels sprouts (another article), swallowed a daily multivitamin and went off the Pill. I felt healthy and positive—until mammo time came. They kept taking more images. With my B-cup pulled into a vise, ribs jammed against the machine, I held my breath.
"There are residual microcalcifications," my radiologist said. Were they missed, or did they grow back? I had questions, but my surgeon was difficult to reach, so I consulted a different surgeon. He gave me a breast exam and studied my reports. "Looking at your case, Denise," he said—only my name isn't Denise. Busy studying so many chests, he clearly mixed up names. He smiled, apologized, then paused. "I think this is breast cancer." My stomach dropped like a roller coaster, my mind replaying the traumatic reel of my precious dad's death to cancer.
He advised another stereotactic biopsy, which I had on Halloween. Hours later, I was handing out candy, feeling like a partial mummy with a bandaged breast under my shirt. Fast-forward a week to when my radiologist called: One residual microcalcification was ductal carcinoma in situ (DCIS). Though not invasive, DCIS is a proliferation of abnormal cells, considered stage 0 cancer. "What's next?" my voice quavered, which alerted my 11-year-old daughter that something was wrong. She flung her arms around me. "I'm going to be fine!" I whispered, but her tears broke my heart.
I wanted those cells out of me, but I was paralyzed with indecision over how to make it happen. Surgeon number 2 said since I was small-breasted, a lumpectomy would be deforming. He wanted to excise another area that my breast radiologist had deemed benign, and suggested a nipple-sparing mastectomy with reconstruction. Surgeon number 1 said she'd do a non-deforming lumpectomy; she wouldn't take out the benign area. (Some doctors even support watching and waiting at the non-invasive early stage.) I debated only with my husband and best friends, as comments from others ranged from the cavalier "Just cut them off!" to the tragic "My friend died from breast cancer." I chose lumpectomy, banking the mastectomy option, because my surgeon was confident she could get all the questionable cells. But I pushed for a better experience this time around. When I had trouble getting a surgery date from the prominent (read: swamped) hospital, I worked with their patient advocate, requesting "no students," an experienced radiologist for wire placement and more communication from my surgeon.
The second surgery went more smoothly, but my lumpectomy pathology showed ADH—not DCIS. I've since learned pathologists can classify the same cells differently: ADH and DCIS can be on a spectrum (or not). ADH isn't the same in every woman—neither is DCIS. And you can have a touch of DCIS in a bed of ADH. To put it plainly, no matter what you're told, being in the gray zone is downright confusing.
I saw an oncologist who suggested genetic testing for BRCA1 and BRCA2 mutations (I ended up being negative) and genomic testing Oncotype DX for DCIS (which gave me a 6% to 14% risk of recurrence). We shelved radiation because my risk score was low. Since the DCIS was estrogen-positive (feeding on estrogen), he recommended an estrogen blocker, tamoxifen, to halve my risk. While the drug brought me menopausal symptoms, like night sweats, and a risk of uterine cancer, I still appreciate this preventative pill.
Six weeks after the lumpectomy, just before New Year's Eve, I had another mammogram. Sitting quietly, praying in an empty waiting room decked in holly and breast brochures, I froze when my radiologist appeared. "Those microcalcifications are gone," she said. I exhaled and looked up above. "Thank you, God." Then I hugged her. "And thank you. You might've saved my life." She smiled and added, "Happy New Year."
In the year since, my mammograms have been stable. While I still worry, I don't let anxiety mess with my mind. I unfollowed breast cancer sites, so I don't obsess and second-guess. I watch how I think about ADH and DCIS, since calling it "early stage breast cancer"—even just in my head—implies more is coming, which is not something anyone knows for sure. My breast didn't "betray" me, it helped "heal" me. It gave out clues in dozens of tests that something wasn't right. I'm not glad this happened, but it did change me for the better. I learned to find hope in worry, knowledge in confusion and gratitude for all the people who helped me along the way.
Should I get a mammogram?
Definitely. Before you turn 40, talk to your ob-gyn about when to first have the exam and how often you should get one, as health organizations don't all agree. While the American Cancer Society recommends yearly testing starting at age 45 (with an option to begin at 40), the U.S. Preventive Services Task Force suggests every two years from 50 to 74 (before 50, patients should make an individual decision), and the American Congress of Obstetrics and Gynecologists guidelines advise yearly mammograms from age 40. Why the age discrepancy? "Cost, time taken out of the patient's day and worry," explains Jill Rabin, MD, an ob-gyn and a professor at Hofstra Northwell School of Medicine. "Some of it's fear of putting women through unnecessary biopsies. But it's better to have a negative biopsy than die from undiagnosed breast cancer. Show me a better way—then we'll talk about changing guidelines."
Should I get tested for BRCA1 and BRCA2 gene mutations?
Maybe. There's no widespread general population screening yet, but that's being studied to analyze harms and benefits, explains Huma Rana, MD, clinical director, Cancer Genetics & Prevention at Dana-Farber Cancer Institute. In the meantime, learn and jot down your family history of cancer— on both sides—before talking with your physician. "There's this misconception in breast cancer that only the mom's side matters," says Rana. "Getting information on your dad's side is also important."
In addition to having a family member who has tested positive for a BRCA1 or BRCA2 mutation, other signs of a higher likelihood of carrying a mutation in these genes include personal or family history of ovarian, fallopian tube or peritoneal cancer; pancreatic and aggressive prostate cancer; and breast cancer before age 50.
What is the first thing I should do if my biopsy says cancer?
Find a multidisciplinary cancer center where you can meet with medical, surgical and radiation oncologists all under one roof. "Cancer is not straightforward and requires the input of three different types of doctors," notes Alberto Montero, MD, a breast medical oncologist with the Cleveland Clinic. Having them all in the same facility not only eases communication between the doctors but also expedites getting information to you. "You want to see all of these doctors, preferably on the same day," says Montero, "so in one visit you can get a good idea of what your treatment is going to entail."
What are my options if my biopsy says DCIS?
First, confirm the diagnosis. Make sure your slides were examined by an experienced pathologist and seek a second-opinion pathology service if not. Pathologists can disagree on low-grade DCIS, explains David Euhus, MD, director of breast surgery at Johns Hopkins Kimmel Cancer Center. "Your question might be, 'Are you sure this is DCIS and not atypical hyperplasia?'" Check with your insurance, which may cover this option (though you may pay part of the cost).
Second, assess treatments with your doctor. Euhus shares risks with his patients: By doing nothing, for example, you risk developing invasive cancer at the rate of 2% a year—20% in 10 years. "If you excise it, that chance goes down to 14%," he says. "If you excise it and do radiation, that rate goes down to 7%. If it's estrogen-receptor-positive and you excise it, do radiation and take tamoxifen, you'll be down to about 4%. If you do a mastectomy, you're down to 1%."