"It’s not every day you walk down the street and a boulder falls on your head,” says New Canaan resident Pam Silverman, describing the way it felt when she was diagnosed with breast cancer in 1997. “I was very lucky,” she says, “because they got it early.”
In 1998 Pam cofounded Go For a Cure with her friend and fellow long-term survivor Jane Preziosi. Between 1999 and 2003, the tennis-focused fundraiser netted $150,000 for research; equally important was the attention brought to a disease for which early detection is key.
“Caught at the right time, breast cancer is treatable,” Pam says. “I knew that if we could just get women to do regular breast checks and go for their mammograms, we would be saving lives.”
Cissy Hornung of Westport, now age seventy-three, is in the third of her nine lives. The first was before she was diagnosed with breast cancer in 1985 at age fifty-one; the second, a fourteen-year cancer-free interval following treatment; the third began in 1999 with the news that the cancer had spread to her bones. “That was a real shock,” she says, “because by then, when I woke up in the morning, I was no longer thinking ‘breast cancer.’ I felt free as a bird.”
Approximately 3 million women in the United States are living with breast cancer, according to the National Breast Cancer Coalition. Of those, an estimated 1 million do not yet know they have it. Although Cissy’s aunt had breast cancer, about 90 percent of women who develop the disease do not have a family history.
In the last eight years, Cissy has been living life with her characteristic exuberance. She and her husband, Don, enjoy their home at the beach, a broad circle of friends and a family that includes eight grandchildren. On a parallel track, she continues to be guided by Dr. Arthur Levy, director of medical oncology at Yale Cancer Center, through a succession of treatments; each one temporarily keeps the cancer at bay.
Cissy can’t count how many chemos she’s been on. “When one stops working, Dr. Levy comes up with a new kind,” she says, recalling their very first interview. “He told me, ‘I will be the doctor, but you will have control.’ I knew right then I could trust him.”
A veteran of thirty-two years in the battle against cancer, Dr. Levy points out that huge progress has been made, particularly in the successful treatment of breast cancer. Where once very few drugs made a real difference, today there are many weapons in the medical arsenal. “Not only are we able to treat the cancer effectively, but we have drugs to combat infection, treat anemia and control nausea,” he says. “If you are miserable from the treatment, then what’s the point?”
Three years ago, when Cissy’s cancer took a dangerous turn, Dr. Levy’s ability to really listen and his patient’s exact description of what she was feeling turned out to be pivotal. “Large tumors had developed near my spine,” says Cissy, then in Florida and about to leave on a family vacation. “I’d be a cripple today if not for Dr. Levy, who told me to get an immediate MRI and then to get back to Yale right away.”
Instead of leaving for St. Barth, Don and Cissy chartered a jet for the emergency trip home. “I had radiation for twenty-seven days straight,” Cissy says. “It was really hard, but by the end of it, the tumors were 100 percent gone.”
She points out that today’s community of cancer survivors share an extraordinary bond. “When I was first diagnosed, cancer was a whispered thing,” she says. “Particularly with breast cancer, there was shame connected with the diagnosis.” Aware that people knew she’d had a mastectomy, she felt painfully conspicuous. “Just saying the word breast was difficult for someone of my generation.” »
Eleven years ago, Cissy decided to go public. “It feels so much better to be direct,” she says. Then living on Beachside Avenue in Westport, she and Don were friends with actor Jack Klugman, another cancer survivor. Broadway on Beachside was Cissy’s idea — its original entertainers were invited by Klugman. It was a fundraiser nobody wanted to miss, netting $80,000 the first year. “We did it for eleven years and each year we made more money,” Cissy says. “Every cent was directed to research.”
Helping others has been important to Maggi Michno, a New Canaan resident who became involved with Go For a Cure in the aftermath of her own diagnosis and treatment. Now a seven-year survivor, she makes herself available to women who have been newly diagnosed, pointing out that she’s been amazed at how widespread breast cancer is. “But people can lick this disease,” she says. “I have so many friends who’ve had it and they are fine today.”
In 2004 the fundraising baton was passed to the next generation. Carolyn Silverman and Kate Preziosi, then in high school, took over where their moms left off, organizing a “Junior Go For a Cure,” which took the message to their teenage friends. “Carolyn was nine when I got sick,” Pam recalls. “I’m glad what she learned from my illness was to be proactive.”
Being part of the fight to find a cure can be the best therapy for dealing with breast cancer’s psychological impact. “You find yourself riding an emotional roller coaster,” says Cathy Colgan, a Westporter diagnosed in 1994 when she was only thirty-two.
“This may sound strange,” she says, “but I woke up in the middle of the night in a cold sweat from this terrifying dream, thinking, ‘Oh, my God! I’ve got to do a breast exam!’ I don’t know why, because I don’t have a family history. And in the morning, I found a lump.”
A mammogram led to a biopsy, which diagnosed DCIS (ductal carcinoma in situ), fortunately, in a very early stage. A lumpectomy and radiation cured the cancer, but recovery would turn out to have many levels. “I was a stay-at-home mom with three kids ranging from eighteen months to just starting kindergarten,” she says. “I’d drop my daughter off at play group and then drive to Norwalk Hospital for the radiation treatment. I’d always been this healthy person. What was I doing, sitting there with all these much older people who appeared to be really ill? I’m in my miniskirt and tank top thinking, ‘What am I doing here?’ It was surreal and very scary.”
It would take years for Cathy to feel empowered again. “When I passed the five-year survival mark, I began to feel more like myself,” she says. “That’s when I decided I wanted to do something to fight this disease.” The concept of a Boogie for Breast Cancer party to celebrate survival and raise money for breast-cancer research morphed from a fun, life-affirming gathering of friends to “an event” when Cathy’s friend Moshe Aelyon, the well-known party planner, offered his help free of charge.
Two hundred people attended the first Boogie for Breast Cancer fundraiser at Stage 18 in Norwalk. The next year, in partnership with Avon’s Breast Cancer Crusade, things really took off. “By the third and final event, whose many sponsors included Starwood Hotels and Oxford Healthcare, 700 people filled the Capital Theatre in Port Chester, New York.
“My daughters were in high school by then, which was quite a statement,” Cathy says. “They formed a Boogie Teens Committee, creating and selling a ‘We Boogie’ silver bracelet with a pink ribbon.” At the time of the diagnosis, Cathy’s children were too young to be told; she had the luxury of telling them at a point where she could say she was cured. “My girls will need to be informed, aware and diligent about breast checks,” Cathy says. “But since I’m the only one in my family to have this, we’re not planning to do genetic testing.”
These days, busy raising funds for other causes, Cathy doesn’t remember every last medical detail, but her priorities are forever changed. “You realize what a gift your health is and how lucky you are to have your family and friends,” she says. “You take a good hard look and focus on what’s really important.”
For those riding breast cancer’s physical and emotional roller coaster, bumps along the way are being cushioned by a combination of traditional medical care with a focus on the individual patient. Assisted by trained breast health specialists at area hospitals, women are doing what they traditionally do best: sharing their experiences and helping one another along on the road to recovery as they deal with the realities of a disease now considered a chronic rather than a terminal illness.
Nancy Sokolowski, the nurse-coordinator at Norwalk Hospital’s Smilow Family Breast Health Center, runs a program that offers Reiki, massage and yoga therapy as well as support groups for both newly diagnosed and long-term survivors. “It’s not uncommon to move from diagnosis to surgery in the space of a month or less,” she says, adding that women are living active lives during treatment and beyond.
Hired by the hospital in 1980 to develop a support program for breast cancer prevention and treatment utilizing a grant from Sloan-Kettering, Nancy describes being given a desk, a chair and a mandate to evaluate what would serve the oncological needs of the community. Almost three decades later, she makes it clear that her most important role is listener. “Each woman who comes through that door is facing a particular set of circumstances, both physical and psychological. I let them tell me their concerns and then I respond to those issues.”
Nancy offers a ready ear and calm direction to women usually still in shock after a breast cancer diagnosis. Equally important, she insists, is her no-nonsense approach to seeing that women do not neglect preventive breast care. “I’m concerned about the drifters — those who don’t keep up with routine yearly checks and mammograms,” she says. “We can cure stage one breast cancer, but early detection is critical.”
Wilton’s Andrea Farhi says it took three months after diagnosis and the start of her treatment before she was ready to join one of Nancy’s support groups. “Once I did, I found it really useful to talk to other women who are dealing with the same issues,” she says. “We all have jobs, kids and husbands, and it helps to share our concerns as well as pertinent information. I go every month; four of us now meet informally as well.”
Were it not for the tube sending the chemical Herceptin into a port surgically implanted just under the skin of her chest, Andrea would seem like any other mom, fresh from a lively weekend at Hershey Park with her husband and two young children. » “Herceptin is one of the newer chemos, which targets a particular protein specific to the kind of tumor I had,” she says. “I have to continue it for a year to prevent recurrence.”
Andrea is a veteran of aggressive therapy to obliterate a very rare and invasive inflammatory form of breast cancer diagnosed in August 2006. Over the preceding three months, two small lumps in her armpit morphed into a very large mass in her left breast. Twenty weeks of chemotherapy to shrink the tumor preceded a bilateral mastectomy. “I decided to remove the other breast just to have peace of mind,” she says. “Then I needed four weeks of daily radiation followed by reconstructive surgery.”
Now forty-six and a senior manager at a direct mail marketing company, Andrea is due back at work by noon. “Speed me up, Rita,” she jokes, when the nurse comes to adjust the flow of the Herceptin drip. “I’ve got to be out of here in an hour.”
Work has been the best medicine for Andrea, a much-needed dose of normalcy to balance the stresses of her parallel life as cancer patient. “My company has been great,” she says, “giving me total flexibility and a laptop to use at home when I’m not quite up to driving after a treatment.”
Her red hair, once shoulder length, hugs her head these days in an attractive pixie style, a look preceded by a series of signature silk scarves that covered her bald head. “One of the women in my support group used scarves with great earrings and I thought it was a cool look,” she says. “I’m not a wig type of person.”
A baseball cap worked at first, but when her hair started coming out in clumps, she decided to have her hairdresser just shave it all off. “I went alone while my husband stayed home with our nine-year-old daughter and five-year-old son,” she says. “We’d told them what I was doing, but nothing quite prepares you for the change. I came in, swept off the baseball cap and my little boy burst out laughing. It was perfect, really.”
Andrea counts herself fortunate to have connected with Dr. Linda Vahdat, medical director of the Weill-Cornell Breast Cancer Center, an oncologist who is one of the top breast cancer researchers. “So I’ve benefited from cutting-edge drugs like Darnestra, which is not yet available to the general public,” she says. “I took it with the initial Adriamycin-Cytoxan-Taxol chemo and I think it made a major difference.”
Along with friends and neighbors stocking her refrigerator with meals, driving her kids wherever necessary, and taking her to and from treatments and doctor appointments, Andrea credits her husband Joe with being her rock. “Of course, he teased me about the reconstruction a lot,” she says, “saying this was my chance to go for a double D.”
All kidding aside, Andrea describes being really impressed by data supporting how a positive attitude can impact recovery. “There are so many inspiring stories of survivors these days,” she says. “I mean, look at Lance Armstrong.”
She describes herself as being “in remission, not cured,” but refuses to dwell on negative thoughts. “Medicine is making enormous progress,” she says. “Dr. Vahdat tells me, should the cancer return, she has plenty of new trials to put me on. I find that very reassuring.” She and Joe have decided to be happy, enjoy their family and friends, and hope for the best.
Andrea chose to be genetically tested at Yale since her mother had postmenopausal breast cancer and medical records for her family are no longer available. “I wanted to clarify things for my older sister and for my daughter,” she says. When told she did not carry either the BRCA1 or BRCA2 gene, her reaction was a mixture of relief and frustration. “Why then did I have breast cancer?” she says. “I’d breast-fed my babies and done my yearly checkups and mammograms? It made no sense.”
When it comes to genetics, hematologist and oncologist Richard Zelkowitz, Smilow’s medical director and a specialist in breast cancer, is quick to say that this science is in its infancy. “Ten years ago there was no genetic testing related to breast cancer,” he says. “There are people with very suspicious family histories who test negative for BRCA1and BRCA2, which carries a 90 percent risk of developing the disease but is found in a very small percentage of women. So maybe there’s a BRCA3 out there? Only more research will tell us that.”
Yale’s Dr. Arthur Levy, Cissy Hornung’s oncologist, would agree. As for the new DNA variations recently identified as predictors for breast cancer, but at a lower risk level, he suggests that it’s much too early to tell. “The media jump on every little thing,” he says. “I read about so-called scientific advances before I’ve even received the journal detailing the research.”
The future of fighting cancer, Dr. Levy believes, will be through identifying the signature proteins of particular tumors and developing drugs like Herceptin, which target those specific proteins. Digital tools will make early detection more consistently achievable. Meanwhile, he describes the fight against cancer as sometimes being “more of an art than strictly science, a combination of gut feeling and knowledge gained through years of experience.”
For instance, now and then something old becomes new again. Cissy is currently on a medication called Xeloda, which in 1999 Dr. Levy might not have thought of for her, but whose value in treating breast cancer has become more and more evident over the years.
“When I need something else, Dr. Levy will find it for me,” says Cissy, out walking her rescued greyhound, Joy, at the end of another good day. Along with plenty of laughter, it probably included at least one phone conversation with a complete stranger, someone just diagnosed needing advice and reassurance. “Helping another person helps me,” she says. “Nobody should have to deal with this alone.”
In June Maggi Michno’s daughter, Jenna, then a senior at New Canaan High School, took the Go For a Cure fundraiser in a new direction. “Arts for a Cure,” an evening of artistic performances — a natural extension of Jenna’s passion for dance — was triggered by a class that required a senior project.
“I wanted to harness something I love for a larger purpose,” she says. The event took place at Ballet Etudes, where Jenna studies dance, and featured two high school bands, the company Jazzworks from Norwalk and songs composed for the occasion by high school students; one senior did a monologue from Shakespeare. An exhibition of students’ artwork, a raffle and a bake sale were additional elements.
BREAST CANCER STATS AND FACTS
Due to a combination of early detection and improved treatment options, death rates from breast cancer have steadily decreased since 1990. Once a death sentence, it is now regarded as a treatable, chronic disease. The five-year survival rate of women diagnosed with early stage breast cancer is 96 percent.
Breast cancer alone is expected to account for one in four, or 26 percent, of new cancer cases among women. An estimated 178,480 new cases of invasive breast cancer are expected to occur among women in the United States in 2007.
An estimated 62,030 new cases of ductal carcinoma in situ (DCIS) breast cancer are expected to occur among women in the United States in 2007. DCIS breast cancer incidence rates have stabilized since the late 1990s.
Female breast cancer incidence rates leveled off from 2001 to 2003 after steadily increasing for the prior two decades. This may reflect a dramatic reduction in hormone replacement therapy use following publication of the Woman’s Health Initiative in 2002.
On average, mammography will detect about 80 percent to 90 percent of breast cancers in women without symptoms. Magnetic resonance imaging (MRI) appears to be more sensitive in detecting tumors in women with an inherited susceptibility to breast cancer.
Cancer-causing mutations in the inherited susceptibility genes BRCA1 and BRCA2 account for approximately 5 percent to 10 percent of all breast cancer cases. Women who carry those genes stand a 90 percent chance of developing breast cancer.
Recent research has discovered other genes whose presence increases the risk of developing breast cancer by 60 percent. The work in this field is still considered very new.
By comparison with thirty years ago, doctors have weapons in their medical arsenal to fight breast cancer. Targeted drugs like Herceptin, which kills a specific protein in the cancer cells, are the new approach to fighting cancer.
RESOURCES
Local groups with cancer-related missions: Some of these organizations fund breast-cancer research among other causes.
American Cancer Society: Learn about the latest research news, clinical trials and support programs and get answers to frequently asked questions about breast cancer. In its Reach to Recovery program, specially trained volunteers help patients cope with their breast cancer experience. 372 Danbury Road, Wilton, 563-0740; cancer.org.
Bennett Cancer Center: The center, at Stamford Hospital, is the largest community-based research center and clinical trials program in Fairfield County. The hospital’s Women’s Breast Center offers all-digital mammography plus a wide range of screening and diagnostic options. 30 Shelburne Road, Stamford, 276-1000; stamfordhospital.org
Breast Cancer Alliance: Founded in Greenwich in 1996, the alliance is now the fourth- largest private noncorporate organization providing funds for breast-cancer research in the country. The money raised by the alliance funds research, education, outreach and breast surgical fellowship programs. 48 Maple Avenue, Greenwich, 861-0014; breastcanceralliance.org
Breast Center at Greenwich Hospital: The Breast Center provides clinical and support services, from screenings and dia-gnosis to treatment, counseling and education. A specially trained oncology nurse, Jan Larkin, RN, MSN (863-4350), helps patients coordinate all aspects of care. Cohen Pavilion, 77 Lafayette Place, Greenwich, 863-3031; greenhosp.org
CancerCare of Connecticut: CancerCare, a national nonprofit organization, provides free professional counseling, education, financial assistance and practical help to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved. 120 East Avenue, Norwalk, 854-9911; cancercare.org
Center for Hope: The center provides adults and children coping with a life-threatening illness or grieving a death with professional counseling, support and education. Fees are on a sliding scale. Family Centers, 590 Post Road, Darien, 655-4693; 40 Arch Street, Greenwich, 869-4848; centerforhope.org
Norma F. Pfriem Breast Care Center: The center, staffed by nurses and social workers, provides information about treatment options and develops a network of support to help with decisions, treatment and recovery. Support groups meet at numerous locations throughout Fairfield County. Clinical support services are available at Bridgeport Hospital, 267 Grant Street, Bridgeport, 384-3392, and 111 Beach Road, Fairfield, 255-5300. bridgeporthospital.org/breastcarecenter
Smilow Family Breast Health Center: At Norwalk Hospital, the center offers education and support for women as they cope with abnormal breast-screening findings. A nurse clinician, Nancy Sokolowski, RN (852-2300), helps patients navigate today’s healthcare system. Maple Street, Norwalk, 852-2000; norwalkhosp.org
Yale Cancer Center: The center is one of 39 in the nation and the only comprehensive center in southern New England. Treatment is available through multidisciplinary teams to ensure well-managed treatment plans. It collaborates with scientists and physicians at Yale University School of Medicine and Yale–New Haven Hospital. 33 Cedar Street, WWW 205, New Haven, 785-4095; yalecancercenter.org
INFORMATIONAL WEBSITES
Breast Cancer.org: breastcancer.org
Komen Breast Cancer Foundation: komen.org
Mayo Clinic: mayoclinic.com
National Cancer Institutes: cancernet.nci.nih.gov
RISK FACTORS
Your risk of breast cancer increases if you have one or more of the following risk factors, but it can occur without any of them
• Age: Risk increases with age. More than 75 percent of women diagnosed with breast cancer are over age fifty.
• Genetic mutations: About 5 percent to 10 percent of cases are directly linked to inherited mutations in breast cancer–related genes. Two genes (BRCA1 and BRCA2) help prevent cells from growing abnormally and developing into cancer. But if one of these genes is defective or has changed, it doesn’t function correctly, increasing the risk of abnormal or cancerous cells.
• Family history of breast cancer: Having one first-degree relative with breast cancer approximately doubles a woman’s risk. Having two first-degree relatives increases the risk fivefold. Your first-degree relatives are your parents, siblings and children.
• Personal history of breast cancer: If you have cancer in one breast, your risk of developing a new cancer in the other breast or another part of the same breast is three to four times greater than the risk for a woman who hasn’t had cancer.
• Previous breast biopsy: A previous breast biopsy diagnosed as proliferative breast disease without atpia or usual hyperplasia slightly increases breast cancer risk. However, a previous breast biopsy of atypical hyperplasia significantly increases breast cancer risk. A diagnosis of fibrocystic changes without proliferative breast disease does not affect risk.
• An early first period or late last period: If you started menstruating before age twelve or went through menopause after age fifty-five, you have a slightly increased risk.
• Alcohol use: A recent study found that women who drank 30 grams of alcohol (about two drinks) or more a day had an 80 percent higher risk of being diagnosed with hormone-sensitive breast cancers.
• Being overweight: Risk appears to increase for women who gain weight as adults but not among those who have been overweight since childhood. Also, excess fat in the waist area increases risk more than extra fat in hips and thighs.
• Having no children: If you have never had children or had your first child after age thirty, you have a slightly higher risk.
• Hormone Replacement Therapy: If you’ve taken estrogen with progestin and have other risk factors for breast cancer, your risk may be higher.
• Exposure to certain chemicals: Carcinogens, like those in charred meat, can increase the likelihood of abnormal cells developing.
Check your risk with an online calculator www.halls.md/breast/risk.htm
GET INVOLVED
Breast Cancer events in October
Oct. 4 > fashion show at Lord & Taylor, 110 High Ridge Rd., Stamford; 6 p.m.
Oct. 4–24 > paint the town pink sponsored by Stamford Hospital’s Bennett Cancer Center, Women’s Breast Center and Mobile Mammography Program. Call Michelle Palazzo, 276-6143, or go to paintthetownpink.org.
Oct. 9 > “Sex and the City” girl’s night out at the Avon Theatre, 272 Bedford St., Stamford; 7 p.m., $20. Call 877-233-9355.
Oct. 11 > Expression through art, Pink Flamingo Hotel, 77 Taird St., Stamford; 5 p.m. Call Sterling Glen, 327-4551.
Oct. 14 > Making strides against breast cancer, a 5-mile walk at Sherwood Island State Park, Westport. Call the American Cancer Society, Wilton, 563-1533, or go to cancer.org/stridesonline.
Oct. 15–21 > A portion of cupcake sales at participating local bakeries goes to CancerCare of CT. Call 854-9911.
Oct. 16 > Shop Ralph Lauren, 51 Elm St., New Canaan; 10% of sales go to the Mobile Mammography Program.
Oct. 18–21 > A percentage of sales at Stamford town center benefits the Bennett Cancer Center; call 323-3100.
Oct. 18–21 > Saks Fifth Avenue, Greenwich, will donate a percentage of sales to CancerCare of CT. Call 854-9911.
Oct. 19 > Girlfriends luncheon, Water’s Edge at Giovanni’s II, 2748 Post Rd., Darien; $40. Call 276-6143.
Oct. 20 > Rose of Hope survivor’s conference: breast cancer and beyond, Liedle’s Caterers, Kenyon St., Stratford; 8:30 a.m. to 12:30 p.m. Call the Norma F. Pfriem Breast Care Center, 255-5300.
Oct. 24 > Agabhumi, the best of Bali, an evening of wine, music and shopping; 20% of sales go to the Mobile Mammography Program, 22 Magee Ave., Stamford; 5:30 p.m.
Oct. 26 > Breast Cancer Alliance luncheon with a Mitchells/Richards Fashion Show at the Greenwich Hyatt. Call 861-0014.