Ribbons of Hope
Tremendous strides have been made in the treatment of breast cancer, and Greenwich women are exploring all of them — traditional and holistic
Elizabeth Galt’s first breakfast in Paris as a breast cancer survivor was at her favorite café near the Louvre. “I had a wonderful croissant and very strong French coffee,” she says, “just the way I’d visualized my healthy self doing back when I was preparing for surgery.”
People who know Elizabeth were not at all surprised to learn she had bounced back successfully from a breast cancer diagnosis; many of them, in fact, had been there helping her through it. Presented with the Spirit of Greenwich award in 2006 for her many contributions to her hometown, particularly to Greenwich Hospital where she is on the board of directors, Elizabeth approached her own health crisis pro-actively. With characteristic energy, she was soon making herself available to help other women going through the same experience. “This is a gender-based disease, a very defining experience in a woman’s life,” says the forty-something mother and venture capitalist who invests only in companies run by women. “I’m good friends with many physicians on staff who asked if I would speak to some of their patients, women they felt might be helped by talking with someone who’d been through it.”
Approximately three million women in the United States are living with breast cancer, according to the National Breast Cancer Coalition. Of those, an estimated one million do not yet know they have it. Like Elizabeth, about 90 percent of women who develop the disease do not have a family history. Her breast surgeon, Dr. Barbara Ward, medical director of the Breast Center at Greenwich Hospital, agrees with Yale Cancer Center oncologist Dr. Arthur Levy that the diagnosis of breast cancer is far from an exact science, a reality that is frustrating for both patient and physician.
That said, Dr. Levy, a general oncologist for thirty-two years, points to the enormous progress made over the last three decades. Where once there were very few effective drugs in the medical arsenal, today’s patients benefit from therapies that destroy the cancer cells, as well as medications which combat infection, treat anemia and control nausea. “If you are miserable from the treatment,” he says, “what’s the point?” Equally important, digital mammograms, ultrasounds and magnetic resonance imaging (MRI) have increased early detection of cancers.
“Discovered early enough, breast cancer is curable,” says Dr. Ward. “It is no longer considered a death sentence; even at later stages, it’s become more a chronic illness, something we know how to fight.” She also cites “an explosion” of new understanding about the biology of the disease that has allowed researchers to develop “targeted drugs” that attack unique properties of the cancer cells. Herceptin, for example, is a “magic bullet” for the 30 percent of patients whose tumors contain a particular protein.
“This is the future in breast cancer treatment,” she says. “We are learning more literally on a monthly basis.”
“Dr. Ward was firm, but sensitive and very calm; she made me feel like she would treat her own sister the same way,” says Elizabeth. “Her intelligence, balanced point of view and quiet professionalism were just what I needed.” Diagnosed in October 2005, Elizabeth participated in Greenwich Hospital’s “Prepare for Surgery, Heal Faster” program, an experience that impacted not just her ability to deal with a stressful diagnosis and multiple surgeries, but also her overall perspective. “That program and other integrative medicine options changed my life,” she says, “putting me in touch with my own ability to heal.”
At Greenwich Hospital’s Center for Integrative Medicine, director Bernadette Johnson is a believer in the five-step approach to surgery developed by noted psychotherapist Peggy Huddleston.
Meditation, guided imagery and other mind-body techniques have been shown to help patients feel calmer before surgery and have less pain and better healing after surgery. At the center’s new riverfront facility in Cos Cob, the benefits of traditional medical care are enhanced by complementary holistic therapies like acupuncture, reflexology, massage and meditation; the goal is to achieve balance through science, compassion and healing.
“I was a skeptic,” Elizabeth says, “but the relaxation and visualization techniques worked for me, as did acupuncture for pain. I was off the morphine drip in twenty-four hours, off Percoset and on Tylenol the next day.” She listened to her tapes through earphones even when under general anesthesia because doctors believe that the subconscious mind will still process the soothing words and images. “One of mine,” Elizabeth says, “was the joy I felt in taking care of my daughter Catherine when she was an infant.”
Also, her anesthesiologist talked to her during surgery, telling her how well things were going and saying she would feel relaxed and want her favorite food — coffee ice cream — when she woke up.
“I felt remarkably good when I came to,” she says. “And guess what I was hungry for? Coffee ice cream!”
Elizabeth points out that dealing with anxiety is a very individual thing. One young woman she counseled was thirty-five at the time of her diagnosis. “She’s in advertising so she did a Lotus spreadsheet to review all her options,” Elizabeth says, adding that there are so many different combinations of possible treatments and this was a way she could establish some control. “Fear cripples our thought process,” she says, “and the spreadsheet is very much her generation’s tool; it was an incredible document really.”
The experience of another of Dr. Ward’s patients demonstrates that often, despite meticulous follow-ups, the diagnosis of breast cancer is a process still very far from failsafe. Jennifer Schoenholz’s mom died at age fifty-two of breast cancer when her daughter was a senior in college. As a result, Jennifer began yearly mammograms at twenty-seven with follow-up ultrasounds when prescribed. Still, she spent a year “being watched” prior to the biopsies that diagnosed DCIS (ductal carcinoma in situ) in one breast and globular invasive cancer in the other when she was thirty-nine.
Her treatment for advanced bilateral breast cancer in 2003 meant a double mastectomy and heavy-duty chemo treatments with dosages much higher than the norm to attack any remaining cancer cells. “Most people could do their chemo in a long afternoon,” Jennifer says. “Mine meant spending forty-eight hours in the hospital, every other week for eighteen weeks.” Radiation treatments, by comparison, were a breeze.
Post-diagnosis, because she had concerns for her daughter and an older sister, Jennifer chose to be tested for the BRCA1 and BRCA2 genes that predict a 90 percent risk of getting breast cancer. “Despite the whopping double dose of the disease,” she says, with some frustration, “I don’t have the gene for breast cancer.”
Jennifer’s sister Cathy — given her higher risk of breast cancer based on family history — was very practical. At forty-two, she had her children and didn’t want to spend five years on Tamoxifen, a long-term chemotherapy that prevents cancers from recurring. Instead, she opted to have a prophylactic bilateral mastectomy and reconstructive surgery. “She had a hard time finding a doctor willing to do it,” Jennifer says, “but she persisted.”
A referral from Dr. Ward eventually allowed the surgery to be done by a trusted surgeon in Boston, Cathy’s hometown.
“I find that women who have suffered the tragedy of losing their mother to breast cancer look at it very pragmatically; they can see it happening to themselves,” Dr. Ward says, “and in Cathy’s case, her sister had just dealt with a very aggressive definition of the disease.” “And guess what?” Jennifer says. “The pathology report showed very early bilateral DCIS. My sister got the cure before she knew she had the disease. Her breasts were ticking time bombs.”
Jennifer, now forty-three, describes herself as a “very, very lucky” woman. “I’ve just passed the four-year mark,” she says, adding that she was ten years younger than her mother was when diagnosed. “My mom died of her cancer in 1986. Mine was so much worse and I am still here. There’s been huge progress in the past twenty years.”
She minces no words when people call with questions. “I believe in going where the best doctors are,” she says, citing, along with Dr. Ward, Dr. Linda T. Vahdat, medical director of the Weill Cornell Breast Center. “She’s a top research oncologist whose specialty is high-dose chemotherapy in breast cancer. I was lucky to have her managing my treatment protocols.
I think it made a big difference.” When the phone rings with someone asking for advice, Jennifer cuts right to the chase.
“I know how scary this is,” she says,"but what are you waiting for? If you have the tiniest suspicion, go and have it checked out.”
Breast health specialist and nurse coordinator/navigator Jan Larkin wrote the book Patient Information Resource for the Greenwich Hospital Breast Center. An eleven-year breast cancer survivor, now age fifty-eight, she knows the subject firsthand. Actually, Jan is a second-generation survivor; her mom, now a vigorous eighty-seven, was treated for breast cancer when she turned seventy. Seventeen years later, Jan describes her mom as “one hot ticket,” even while noting that postmenopausal breast cancer has different risk implications for female family members.
Jan was working for a cardiologist when she found a lump, decided it was probably a cyst and left for vacation. “I was under the total misconception that since I was a volunteer for the American Cancer Society, teaching women how to do breast self-exams, that I was immune,” she says, ruefully. By Wednesday of the week she got home, the radiologist gave her the bad news: It wasn’t a cyst.
By Friday, she’d had an incisional biopsy that confirmed the lump was malignant. “It was stage two, invasive, ductal carcinoma, but the good news via CAT scan and bone scan was that there had been no metastasis,” she says. A week after the initial biopsy, Jan had a lumpectomy; the surgeon also removed ten lymph nodes that were found to be clean. Following surgery, she had chemo, then radiation, followed by a five-year course of Tamoxifen to prevent recurrence.
“I didn’t miss a day of work through all of this,” Jan says, explaining that by then she was a school nurse at an elementary school. “Those kids were great; they kept me going,” she says. “They were the best medicine because they made me laugh.”
In addition, Jan joined a support group directed by Greenwich Hospital and led by a facilitator from the Center for Hope in Darien. “Of the group of ten women, three died early on, but they had very advanced disease,” she says, adding that the seven survivors still meet. “We’re like sisters, bonded by the struggle we shared, but these days we just go out to dinner and talk about our lives, hardly ever about breast cancer.”
Five years after her diagnosis and treatment, looking for a summer “fill-in” job, Jan answered an ad for “nurse-coordinator for Breast Center” at Greenwich Hospital. “It lit up for me like a neon sign,” she says. One meeting with Dr. Ward convinced her she was the right woman for the job. “Nobody had ever done this at that point,” she says. “I was given a desk, a computer, a telephone and the mandate to create a program offering an approach then unheard of in breast cancer treatment.”
In consultation with the Breast Cancer Alliance and utilizing focus groups, Jan found answers to the basic questions.
“We asked patients: ‘What do you need? How can we help you through this?’ Women are great candidates for this kind of interaction,” she says. “We are excellent communicators; in this situation, that’s a silver lining that helps us help each other.”
Each time the telephone rings during this interview, Jan checks to be sure it’s not a call for her to come and talk with a patient. If someone is upset, she can usually provide calming clarity. Sometimes it’s a woman who is just very frightened. “Maybe she’s been called back for a second look during a mammogram,” Jan says. “There’s a tendency to panic and go straight to the obituary. I have been there, which gives me the credentials to redirect that thought process.”
Generally, Jan is called in because a patient has just been diagnosed. Often she will sit in on the initial consultation. “When the doctor says, ‘You have breast cancer,’ it’s a huge shock,” Jan says. “Three-quarters of whatever comes next usually goes right out the window. So I will call the following day, after she’s had time to process the diagnosis, to answer all her questions.”
Each Patient Information book is individualized, tailored so as not to flood the woman with unnecessary information. “If you have DCIS,” Jan says, “then you don’t need to know about lobular or inflammatory breast cancer.” Similarly, Googling without guidance is not recommended. “That can be overwhelming; I’ve had to tell some women to just pull the plug on the computer,” Jan says. “Scaring yourself to death serves no purpose.” Instead, each patient’s book contains a list of recommended reading and websites.
Jan tells her patients to expect meltdowns, especially when they are not expecting them. “Out of the blue, you will find yourself thinking, ‘This pain in my shoulder must mean the cancer is spreading.’ Suddenly, it’s a full-fledged panic attack,” Jan says. “That’s when you pick up the phone and call me.” The shoulder pain typically will range from fleeting to nothing ominous, rather the result of doing something mundane like lifting a forty-pound bag of dog food.
“I completely understand what they are feeling,” Jan says. “But I have the necessary objectivity and information to help them take it logically, one step at a time.”
Each person is different, Jan points out, describing a young woman currently in the middle of breast reconstruction after a bilateral mastectomy. Single and living in Manhattan, she was diagnosed very early, at age thirty-four, soon after learning that her father’s sister was a BRCA1 gene carrier. Her aunt, the source of the gene, had survived breast cancer at age twenty-seven, but had just died of ovarian cancer at age fifty-two.
Since she was hoping to marry and have a family, this woman had decided there was no point in being genetically tested because she knew she wouldn’t choose to have surgery prophylactically. But in January, 2007, she felt a lump and knew immediately. Genetic testing done the week before her surgery revealed that she, too, carried the gene. Her sister, however, did not. She told Jan, “The odds were fifty-fifty; it was the luck of the draw and I lost.”
The 7 to 8 percent who carry the BRCA1 or BRCA2 genes are often the youngest patients, according to Dr. Ward. It’s a particularly difficult reality so early in a woman’s life since, in addition to prophylactic mastectomies, removal of the ovaries has been shown to significantly reduce the risk. For those unwilling to take such drastic measures, surveillance every three months using a different diagnostic tool is recommended.
“One has to strongly suspect that there is, at the very least, a third gene that we don’t know about yet,” Dr. Ward says, although she agrees with Dr. Levy’s assessment of the new DNA variations now being related to breast cancer. “They are supposed to be associated with an additional 20 to 40 percent risk over the general population,” Dr. Levy says, adding that the media is too quick to publish such findings. “They are on it even before the medical community has been sent the scientific journal with the article describing the research. This is all very new,” he says, “much too soon to judge.”
More proven is data that supports sticking to a lowfat diet and doing regular exercise to reduce breast cancer recurrence. At the hospital’s Healthy Living Center, where women are being helped to restart their lives after finishing treatment, workshops in proper nutrition and exercise classes designed for female bodies recovering from surgery are offered.
“We’ve been told there’s a disconcerting void at the end of the intensity of being an active cancer patient,” says Dr. Ward, “which is what our N.E.X.T. program [Nutrition, Exercise and other Therapies] is designed to address.” At this point, a woman might be directed toward a support group where the focus is on health in all its definitions: physical, psychological and spiritual.
Regarding the complementary therapies offered by the Center for Integrative Medicine, Dr. Ward suggests that at the very least, they are comforting. “It depends on the person,” she says. “I’ve seen acupuncture help patients deal with pain and with the nausea associated with chemotherapy.
I don’t understand the mechanism, but I’m delighted that it provides relief.” Jan Larkin can personally vouch for the benefits of Healing Touch, a holistic, energy-based “laying on of hands” by specially trained volunteers. “I tried it when they offered it to nurses on Nurses Day,” she says. “It’s not massage and not that much touching really. It’s an energy-field thing, they say. I don’t understand it, but I can tell you it felt wonderful.”
At the three “sisterhood lunches” she held to thank all the women who had offered support during her treatment for breast cancer, Elizabeth Galt talked about gratitude and the connection she felt with those who were there for her during her ordeal. “Helping hands guided me every step of the way,” she says. “I was so relaxed. I was already on my way to have breakfast in Paris.”