The heart and soul of the Johns Hopkins Breast Center, Lillie Shockney is a tough, funny woman who knows too well what her patients face.
By Maria Blackburn
A woman sits on the end of an examining table in Exam Room #1 at the Johns Hopkins Avon Foundation Breast Center. She is middle-aged, dressed in a faded blue hospital gown, and tears stream down her cheeks. Her surgeon has just told her that despite radiation treatments, her breast cancer has returned. Now she needs a mastectomy.
The surgeon has gone to see other patients. A friend, sitting on a nearby chair, cannot offer much solace. The woman waits, scared and worried and with so many questions: Will the mastectomy leave her forever disfigured? How can she still be a woman if she is missing a breast? Is she going to die?
The door opens and in walks a petite woman with short, reddish-brown hair. She holds out her hand, looks straight into the woman's eyes, and says, "Hi, my name is Lillie Shockney." Her voice is calm, her manner direct. "I've sat where you're sitting. I know what you're feeling. I'm going to help you get through this." She hands the woman a copy of "Breast Cancer Treatment Guidelines for Patients," a fat folder of pamphlets, and a pair of books. It is a big pile of paper. Then she says, "I've had breast cancer twice. And I've had two mastectomies."
Shockney watches the woman's eyes travel from her face to her chest when she hears the word "mastectomies." An oncology nurse with more than 30 years' experience, Shockney knows that in the wake of such devastating news, her words and all the pamphlets and books have made little impression. So she grabs the hem of her black jersey top and starts pulling it up. "Can I show you something?" she asks. She flips down the right cup of her bra to expose her bare breast. "Feel that," she says, leaning into the examining table so the woman can see and touch her breast, which, like its mate, was reconstructed using a surgical procedure that transplanted skin and fatty tissue from her abdomen. "Now that feels like a breast, doesn't it?"
A look of relief dawns on the woman's face. She stops crying and starts asking Shockney about the particulars of her mastectomy, how long the surgery will take, and when she might return to work. Shockney answers them all, her eyes locked on the woman's eyes the entire time. So much lies ahead. The woman still has to tell her family and friends. She has to undergo the mastectomy, the breast reconstruction, and the recovery, plus endure three and half months of chemotherapy. Shockney knows none of this will be easy. For now, though, she wants to relieve some of this woman's immediate anxiety and show her that a mastectomy in the flesh doesn't match her worst fears. She jokes about the patient telling friends that "some woman at Hopkins took her clothes off in my room." The surgical technique, Shockney points out, will trim the woman's waistline. "The bonus tummy tuck is a silver lining," she says, her staccato laughter filling the small room. She places her hand on the woman's knee and says, "This is doable."
The appointment over, Shockney tells her, "Call me or e-mail me any- time. I will see you again soon." She says goodbye, walks out, and closes the door. Then she pauses and listens. She does not move away from the door until she hears the woman and her friend laughing inside. She says, "Months from now when her treatment is all over, I want her to look back on this day and remember sitting in that room and laughing."
'88 (MAS), who is 54, has official titles, of course
— she is administrative director of the Breast Center
and a University Distinguished Service assistant professor
in the Hopkins School of Medicine — but her most
significant job does not appear on a business card.
Shockney, has become a crusader for better care for breast
cancer patients at Hopkins and beyond. She has published
six books and more than 50 peer-reviewed articles in
medical journals. She has won more than two dozen awards
for her work from national organizations like Susan G.
Komen for the Cure. She travels the world speaking about
breast cancer and raising the profile of the center. She
has met with thousands of newly diagnosed patients and
their families, answering questions big and small and
sharing her experience. Today it is Shockney's books that a
new patient at the Breast Center receives, her home and
work phone numbers and e-mail address she's given, her hand
she holds in the recovery room after surgery. "I want her
experience to be the least physically and emotionally
traumatic that we can have it be," says Shockney. "I can't
take that breast cancer diagnosis away. But I can make the
treatment experience just a bump in the road — not a
derailment and not a dead end."
|Lillie Shockney, 4 years old in 1957. She had received the nurse's outfit for Christmas and loved it so much that she wore it daily until it was in tatters.||
"For the patient and the Breast Center, Lillie is the
consummate patient advocate," says Nagi Khouri, director of
breast imaging at the center. "Every breast center wishes
they could have a Lillie."
In 1997, when Shockney testified before a U.S. Senate committee on the Women's Health and Cancer Rights Act, she talked about how women with breast cancer were cared for at Hopkins, how they were well-prepared physically and emotionally for what lies ahead. At the hearing, Sen. Jay Rockefeller (D-W.Va.) asked Fran Visco, president of the National Breast Cancer Coalition, "Miss Visco, what Ms. Shockney is describing, is that fairly common, or is this kind of care partner fairly unusual?"
"It is a very unusual situation," Visco replied. "If the Johns Hopkins model worked for every woman and was implemented everywhere across this country, we would not need to be here. But that is not a reality."
Sitting there, Shockney could not keep quiet. "I don't know why we can't make it a reality," she said.
Shockney was 17, in her first year at the MacQueen Gibbs Willis School of Nursing in Easton, Maryland, when she encountered her first breast cancer patient. At the time, a woman who needed a biopsy would have gone under general anesthesia, and if cancer was found, she could awaken to discover all of her breast and chest muscles gone from a radical mastectomy. Shockney was stationed in the recovery room at Easton Memorial Hospital when a patient woke up and said to her, "Please tell me my breast isn't gone." The teen-aged nursing student didn't know what to say. When the patient burst into tears, Shockney did too. "That night I called my mother and told her, 'Ma, it's no wonder this is the most feared disease among women. Look at how we go about informing her that she has it.'"
After nursing school, Shockney worked as a float nurse and
in orthopedics for a number of hospitals. She joined
Hopkins in 1983 as a clinical and research nurse in the
Department of Neurosurgery, where she worked with people
who had glioblastoma, a brain cancer that at the time had a
mortality rate of nearly 100 percent, she says. "Cancer
patients are so vulnerable," she says. "They let you into
their private world and they don't even know you. They need
a great deal of compassion, someone who without hesitation
can sit and hold their hand and cry with them. I felt this
was kind of missing from the nursing profession in
|She was so certain that her biopsy would be benign, she looked up her own pathology report in the hospital's database while her doctor was out of town.||
Shockney was 34 when she became director of performance
improvement at Johns Hopkins Hospital, measuring and
assessing the quality of care delivered to Hopkins patients
for the entire institution. She supervised a team of nurses
who reviewed patients' medical records and then identified
ways to improve quality by implementing initiatives that
reduced post-operative wound infections, and decreased the
time it took to deliver test results.
Four years after starting that job at Hopkins, Shockney was diagnosed with breast cancer. She was so certain that her biopsy would be benign, she looked up her own pathology report in the hospital's database while her doctor was out of town. She read the words "breast carcinoma" 12 times. She was terrified. "I thought the Grim Reaper was staring back at me," she says.
As director of performance improvement, she had thought well of the care at Hopkins. "But flipping over to the other side of the bedrail and becoming a patient changed my perspective," Shockney says. When she woke up in the recovery room after her first mastectomy, unable to feel either breast, she remembers becoming hysterical. "Please tell me what you've done," she pleaded with the nurse. "Please tell me you didn't remove both breasts." The nurse told her she was wearing a binder, a compression dressing designed to prevent pockets of fluids from forming after surgery. "Why couldn't they have told me about the binder before surgery?" Shockney asks now. She remembers being told that she would feel nauseated after her mastectomy. But the vomiting caused her to rupture her sutures, which made her need pain medication, which made her nauseated all over again. She remembers thinking, I not only lost my breast today but I can't get my head out of an emesis basin. "We needed to prevent nausea from the outset," she says.
After her surgery, she wanted to talk to other women who'd had breast cancer. She says, "I had hope from my doctor, but I needed it from a survivor." The American Cancer Society's Reach to Recovery program sent a survivor to talk to her, but it wasn't a good match. Shockney, whose breasts were size 44D, asked the woman, who was a 32AA, whether she should wear prostheses. The woman told her that she found them unnecessary. Shockney replied, "Well, honey, for you they probably aren't necessary, but for me they are going to be."
One day, a doctor she knew at the hospital asked her to talk to his secretary, who had just been diagnosed with breast cancer and was devastated. "I felt really good after I spoke with her," Shockney says, and remembers thinking, "I've done oncology nursing. I oversee quality of care. Why can't I combine the two and volunteer so that women who come after me, who wear my bra, have a better experience than I did? It just seemed like a natural thing to do."
There was no model to follow. Shockney simply jumped in. She volunteered in the just-formed Breast Center 24 hours a week, doing patient satisfaction surveys and writing pamphlets for women on how to read pathology reports and what to expect after surgery. At home in the evening, she talked on the telephone with newly diagnosed patients. Within three years, she left her job as director of performance improvement and joined the Breast Center's staff, first as its breast health educator.
Caring for patients is more than being empathetic, she says. Pat Williford, a former breast cancer patient at Hopkins who now works as part of the center's team of Survivor Volunteers, says Shockney has unparalleled concentration: "What impresses me most about Lillie is that she has this ability to make you feel like you are the most important person in the world at that particular moment. It's like nobody else exists." Theodore Tsangaris, chief of breast surgery at Hopkins and the medical director of the Breast Center since 2002, says, "Imagine your life is falling apart and here comes this powerful, dynamic woman, and she pretty much takes over your life. She puts out her hand and she grabs you and she walks you through it and gets you over the hump and feeling better. That's a real gift. I used to think I was really good at it. Lillie is better than me."
Shockney listens carefully to patients and families and has a knack for explaining complex medical information. She is as positive as she can be, given the diagnosis, and likes to tell patients that their treatment is "doable." But she refrains from telling them what they should do. Instead she looks to the patient for direction. When Gail Shapira was diagnosed last year, she remembers feeling as though everything was out of her control. "That first visit was so hard," Shapira says. Shockney was in the exam room with Shapira and her husband. When the surgeon left, Shockney turned to her and asked, "Now what do you want to do?" Shapira told her that she wanted a bilateral mastectomy, not the lumpectomy the surgeon told her was a possibility, depending on what he found during surgery. Shockney listened to her reasoning. Then she told the North Baltimore school nurse that she would support her decision in all future meetings with the team responsible for her care.
"Even to be given the smallest bit of control was so important," says Shapira, a school nurse who lives in North Baltimore. "Lillie gave me that."
Shockney's devotion to her patients extends long after
their diagnosis. When one of them had to be isolated due to
a drop in her white-blood-cell count, the woman couldn't
hold her young children and became depressed. Shockney
grabbed a pair of pink pom-poms from her office shelf,
recruited Deb Stewart, an oncology nurse and breast cancer
survivor herself, and headed out to a parking garage
rooftop within view of the patient's hospital window. It
was 18 degrees, but the two nurses stayed out there for 30
minutes and cheered for the woman's cell count to rise.
"Laughing strengthens your immune system," says Shockney,
citing research studies. "It boosts your T-cells."
|Women who are struggling with sexuality and sexual relationships after surgery learn that Shockney is honest, direct, and can be downright bawdy.||
Women who are struggling with sexuality and sexual
relationships after surgery learn that Shockney is honest,
direct, and can be downright bawdy. She has no problem
telling patients how scared she was when her husband, Al,
first saw her mastectomy scars, and she doesn't shy from
intimate details about when and how they resumed their
sexual relationship after each of her operations. "So much
of what patients hear when they are diagnosed with breast
cancer is about treatment," says Marc Silver, author of
Breast Cancer Husband (Rodale Books, 2004), whose
wife, Marsha, was diagnosed in 2001. "As a rule, no one
talks to you about sex and no one talks to you about death.
As a patient you almost feel embarrassed to ask. Lillie
puts it all out there, and it's such a huge relief to have
someone who is so knowledgeable and who has been through
this herself. It helps people express all of those things
that are pent up inside."
In the Breast Center, few details escape Shockney's notice. When she learned that biopsy tissue samples were taking more than 15 minutes to get from the operating room to the pathology lab, she sought out the runners responsible for delivering them. "There's a woman right now waking up in the recovery room and asking, 'Can you tell me how bad it is?'" she told them. "Don't lose sight of why we are here." Now the samples arrive punctually. When she saw that new patients were having a hard time getting appointments, she made sure the breast center got its own scheduler. To ensure that doctors and patients had access to the most recent research on breast cancer, she founded and edits Artemis, a monthly electronic journal that includes abstracts of the latest articles. It has 40,000 subscribers, one-third of whom are patients. When she learned of a new skin-sparing breast reconstruction procedure, she raised two-thirds of the $6,000 needed for a Hopkins plastic surgeon to attend the training in Sweden. The rest she donated herself.
That kind of commitment can take its toll on a person's family life. Shockney works long hours, only to come home and labor into the night e-mailing and phoning patients. "Sometimes she'll sit down to dinner and a patient will call and she'll talk on the phone while her dinner gets cold in front of her," says her husband. She's been known to put a heating pad on her side of the bed when she gets up in the middle of the night to work, so that Al won't be able to feel the cold sheets and know how long she's been up. "She just never stops," he says. He had little sense of her workday until he watched a Discovery Health Channel documentary on nursing that featured footage of his wife comforting a newly diagnosed patient. "No wonder you come home so late," he told her. "No wonder you get calls at 10 at night. I will never again question why you work such long hours."
About 10 years ago, Shockney realized that while the Breast Center was doing a good job caring for the women who came through its doors, there were others who could use information and support. She saw the potential of the Internet, and asked for the center to be given its own Web site. Upon being told that she'd have to wait eight months, the programming novice bought a how-to book and in a few weeks built the site herself. She hoped for 5,000 hits per month. She got 3.2 million. The most popular feature is "Ask an Expert." Shockney, the expert, responds to the 200-plus questions she receives each day from people all over the world. She answers the queries between seeing patients, and at night from home. She's online on weekends and holidays, responding to questions about the difference between the stage and grade of their cancers, the particulars of chemotherapy and radiation, and whether they may need to seek a second opinion.
The questions she finds most worrisome are those that
reveal doctors who don't follow current standards for
diagnosis and treatment. One woman wrote of her frustration
after having to wait almost two weeks for her biopsy. (At
Hopkins, biopsy results come within 24 hours.) Another
wrote that a surgeon wrongly told her sister, who had
early-stage breast cancer, that reconstructive surgery
after her mastectomy was rare and shouldn't be considered.
"Just have it off and be done with it — you can buy a
prosthesis at Nordstrom," he told the patient. The woman
wrote, "Why would her [gynecologist] refer her to someone
so insensitive? Are there still surgeons out there in the
|Shockney's patients praise her for what they describe as an unparalleled ability to make them feel as if they are the most important people in the world. Here, she counsels Charisse McNeal in an exam room at the Hopkins Breast Center.||
Unfortunately, there are, says Shockney. There are no national quality standards for the diagnosis and treatment of breast cancer. There's not even a formal definition of what a "breast center" is, which means any doctor's office or hospital can use the name. That's unacceptable, Shockney says. "It's hard enough to have to deal with this disease without having to also worry if the care you are receiving is appropriate." She has served as chair of the National Consortium of Breast Centers' National Quality Initiative since 2003. "Not all of the women who will be diagnosed with breast cancer can get here to Hopkins for treatment. I want to do what I can to improve the breast cancer experience no matter where patients are treated."
In January 1998, Shockney testified before a congressional committee to make it mandatory that health insurers cover breast-reconstruction surgery. Before she testified, she contacted 16 insurance companies and asked whether they covered testicular-implant surgery for patients who had prostate cancer. They all did. "Gentlemen," she told the committee, "it's our turn now." The law passed. In 2006, she told the national Oncology Nursing Society that it should create an oncology nursing certification program divided into specialties. The group liked the idea, created the core curriculum of knowledge last year, and this January selected Shockney as one of six people who will help write and administer the exam to certify breast cancer nurses nationally.
A recent morning finds Shockney at her desk on the fourth floor of the Hopkins Outpatient Center. The small office has a view of the hospital dome. Many of the room's surfaces are covered with leather-bikini-clad teddy bears, pink rubber ducks, and other tchotchkes she has received from patients. Shockney is too busy to enjoy the view. In Exam Room #4 is a newly diagnosed patient and her daughter. The patient, who lives in Florida, had already called Shockney several times over the weekend with questions about her first visit.
But before Shockney leaves to walk down the hall to the exam room, she checks her e-mail once more and finds a question from a woman with inflammatory breast cancer whose condition has been worsening. She wants to know whether she needs to make an appointment to see her doctor. "She's probably afraid of what the doctor will say, but she needs the truth," Shockney says. She turns to her computer, takes a deep breath, and starts typing.
Maria Blackburn is a senior writer at Johns Hopkins Magazine.
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