A Voice for Women and Patients: Joan Lunden Shares Her Breast Cancer Journey

Joan Lunden

With a career as remarkable and distinguished as Joan Lunden’s, it’s really no surprise that she took on her latest challenge—a diagnosis of triple-negative breast cancer—with such determination and grace.

Lunden’s keynote address, which received an unprecedented standing ovation from a packed audience at the Miami Breast Cancer Conference, continued that tradition, as she spoke powerfully and from the heart in a talk perfectly aligned with the meeting’s focus on the patient perspective.

“I am here today to put a face on the patients you see every day—to paint a picture of their experience,” said Lunden, who just 10 days ago completed an aggressive 9-month treatment regimen involving neoadjuvant chemotherapy, surgery, more chemotherapy, and radiation.

She has emerged from that experience, she said, stronger and unwavering in her commitment to advocate for women—not only those with breast cancer, but also those who may be reluctant, fearful, or “just way too busy taking care of everyone else in their lives” to get the medical advice and screening they need to prevent the disease or catch it as its earliest, most treatable stages.

“Trust me, when I say this: we will lie to you. We will lie to our doctors, because we don’t want to look bad, and we definitely don’t want to hear any bad news that will get in the way of our ‘to-do list.’”

The anxiety that so many people have about going to the doctor, she said, can be like “going to the principal’s office, afraid to get scolded”—in this case, for not exercising regularly or “losing those last 15 pounds.” She added that in the doctor’s office, women often feel vulnerable and exposed. And, although it may seem silly, Lunden conceded, “Women don’t want to get on that scale.” All this combines to discourage women from getting lifesaving tests, and for some, “They don’t catch tumors until it’s way too late.”

Breast cancer screening, and the right kind, is an issue which holds special importance for Lunden, who, like most women, “always thought the buck stopped at the mammo machine.” She also had been screened with 3D mammography, but even this technique did not detect her cancer. Lunden is one of the approximately 10% of women with extremely dense breast tissue, making their cancers harder to spot with a mammogram. Recalling advice she received during an interview with breast cancer surgeon Susan Love, MD, Lunden followed up her mammogram with an ultrasound.

It was because of that conversation that Lunden found her cancer when she did. Now she advocates for legislation to require that clinicians inform patients if their breasts are dense—and, importantly, for insurance coverage to pay for it—as is the case in her home state of Connecticut, the first to enact legislation mandating that patients undergoing mammography be made aware of their breast density and the option of further screening.

The “Patient Sitting Before You”

Lunden, who has chronicled her breast cancer journey in a video blog on her website www.joanlunden.com, said that she has heard from a lot of women who say that they don’t want to go for a mammogram because they’re afraid that the results could mean losing their hair or losing their breasts.

“It’s hard not to let it affect your psyche, your self-image,” Lunden continued, emotions she understood all too well when she looked in the mirror without her wig, or when she washed off her eyebrows and eyelashes after chemotherapy and, “for the first time in my journey, I saw a cancer patient looking back at me.”

She urged clinicians to be mindful that when a woman hears that diagnosis of cancer, “it just stops you in your tracks—you, the caretaker, the mom, the wife, the worker, the one who everyone counts on: what am I going to tell the kids, will it scare them, should I tell my coworkers, will it jeopardize my job, will I be able to go to work?”

“This is the patient that you have sitting before you,” all while doctors deliver what seems like a “mountain” of complicated information “shot out of a cannon at supersonic speed,” she said. This problem is especially acute during those very critical first appointments. At these times, she said, she saw the doctors’ lips moving, but “you’re in a kind of parallel universe,” adding that she, like most women, was completely unfamiliar with terms like triple-negative, HER2-positive, and neoadjuvant.

“It’s like a foreign language to us,” said Lunden, who also had to decide whether to undergo standard care or try a promising new treatment strategy that had been reported at the annual ASCO meeting only a few weeks prior to her diagnosis in June 2014. With this approach, her tumor would be treated with chemotherapy before surgery in the hopes of shrinking it and requiring less surgery, a route she is glad she took.

A Positive Outlook

Lunden moved early on to do everything she could to minimize the side effects of her treatment. She worked with a nutritionist (also a cancer survivor) who helped her to follow a diet involving no sugar, wheat, or dairy, a move she said, inspired her to “discover a new clean way of eating.” She attributes this plan, along with plenty of water and plenty of rest, to helping her to avoid most of the side effects of going through chemotherapy. She also took supplements, “but always with the approval of my medical team.”

She expressed warm praise for that team of doctors and nurses, which spanned specialties in medical, surgical, and radiation oncology and three states. Lunden said that their professionalism, collaboration, and communication, including personalizing treatment options for her cancer and a willingness to deploy the latest research, made all the difference in her care.

The way her team approached her diagnosis also fueled in her that all-important positive outlook that helped to carry her through the toughest times.

“I was fortunate to have wonderful relationships with my doctors, and each one of them helped me to understand my disease and all of the options that were available to me.

“These doctors helped me to believe that I could win this battle, and that is so important, being able to maintain a positive attitude and believe that you are going to win.”