Cissy Hornung 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,” says the Westport resident, now age seventy-three, “because by then when I woke up in the morning, I no longer thought 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 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 effectively treat the cancer, but we also 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 her cancer took a dangerous turn, Dr. Levy’s ability to really listen and his patient’s exact description of what she was feeling proved pivotal. “Large tumors had developed near my spine,” says Cissy, who, at the time, was in Florida about to leave on a family vacation. “I would be crippled today if not for Dr. Levy, who told me to get an MRI immediately 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,” she 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 had had a mastectomy, she felt painfully conspicuous. “Just saying the word ‘breast’ was difficult,” she says, “for someone of my generation.”
Eleven years ago, Cissy decided to go public. “It feels so much better to be direct,” she says. While living on Beachside Avenue, Cissy came up with an entertaining fundraising idea: Broadway On Beachside; its original entertainers were invited by Jack Klugman, another cancer survivor and a friend of Cissy and Don’s. It was an event 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.”
A MOTHER’S STORY
Being proactive in 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,” explains Cathy Colgan, a Westporter diagnosed in 1994 when she was only thirty-two years old.
“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 her of the disease but not without leaving the common footprint of fear and bewilderment. “I was a stay-at-home mom with three kids ranging from eighteen months to just starting kindergarten,” she says. “I would drop my daughter off at play group and then drive to Norwalk Hospital for the radiation treatment.
“I had 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 mini-skirt 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 like myself again,” 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 research morphed from a fun, life-affirming gathering of friends to a major 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 what their mother was going through. She says she had the luxury of telling them at a point when 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 the Westport Arts Center, Cathy says 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.”
FROM DIAGNOSIS TO SURGERY
Cathy’s friend Mary Munger Taylor would agree. Diagnosed only last February, she is still riding that physical and emotional roller coaster, with its bumps cushioned by what she describes as “an incredible outpouring of support” from her many friends in town and large extended family.
A former Broadway singer who has sung “The Star Spangled Banner” for the past ten years at Westport’s July Fourth festivities, her preferred rhythm is up tempo. That applies to her current role as mother to two daughters, happily volunteering to stage dramatic productions at their schools as well as helping with PTA, church and other volunteer activities.
Mary’s cystic breasts required professional exams every six months. “I was very grumpy about ‘wasting’ time going for all those mammograms, actually impatient because they all appeared to be false alarms,” she says. “Sometimes I think God gave me breast cancer to help me develop a little perspective.”
An inflamed cyst in her right breast precipitated an MRI, which revealed three malignant tumors in her other breast. “Thank God that machine is set up to do both,” she says, “and that the tumors were only stage one.” A mastectomy and reconstruction were performed in a nine-hour surgery at Norwalk Hospital.
“The bad news is I had breast cancer. The good news is that I got a tummy tuck out of it,” she jokes. “I feel really good that they were able to use my own tissue and that I could leave the hospital with two breasts.”
Although her post-surgery pathology results were generally positive, a suspicious cluster on a lymph node alerted the Sloan Kettering Tumor Board, with which Norwalk Hospital participates in weekly reviews of cases by experts from the major cancer treatment centers. The consensus was that metastasis could not be ruled out.
“That made it necessary for my follow-up course of chemotherapy to be the heavy-duty, double-barreled kind,” she says, adding ruefully, “I used to have much bigger hair.”
Fresh from her third of eight treatments at the time of this interview, her wig looking completely natural, Mary reports that mostly she feels very tired, “sort of spacey” for a few days afterwards. Since she’s on an every other week protocol, she says she has time to bounce back in between treatments. “I was nauseated this morning,” she says, “but I took a pill and now I’m fine.”
Mary and her husband, Rob, chose to be honest with their two teenaged daughters about Mary’s illness. “Protecting them from reality does them a disservice,” she says. “It erodes trust.” Still she worries that her diagnosis will rob her girls of their right to be normal teenagers, exercising all the sound, fury and foolishness that comes with the territory. “They both have been there for me,” she says, “but they shouldn’t have to be perfect just because I got breast cancer; that’s not fair to them.”
Moving from diagnosis to surgery in little more than a month is a psychological challenge. Mary says she benefited from her Broadway “the show must go on” mentality. In this case, the show was her daughter’s class play at Coleytown Junior High School. “It was a big deal for those kids; they were depending on me,” she says. “I think that was a blessing because I didn’t have time to dwell or scare myself to death. And then I discovered how much medicine can do, which is so very reassuring.”
These days, Mary is learning how to not do it all. “It’s hard not to be my normal self,” she says, “to accept help when I need it.” While staying busy during recovery remains her panacea of choice, she is considering exploring other ways of building energy. “Norwalk Hospital has a program that offers Reiki, massage and Yoga therapy,” she says. “I have talked with Nancy Sokolowski, the nurse-coordinator there about support groups. I’m thinking about trying one.”
At her desk at the Smilow Family Breast Health Center, Nancy offers a ready ear and calm direction, usually to women still in shock in the aftermath of a breast cancer diagnosis. Equally important, she insists is her no-nonsense approach to seeing to it that women do not neglect preventative breast care. “I’m concerned about the drifters,” she says, “those who don’t keep up with routine yearly checks and mammograms. We can cure stage one breast cancer,” she says, emphatically. “Early detection is critical.”
Hired in 1980 to develop Norwalk Hospital’s support program for breast cancer prevention and treatment with 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 to listen. “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 runs support groups for both the newly diagnosed and long-term survivors — breast cancer today is considered a chronic rather than terminal disease. “Women are living active lives during treatment and beyond,” she says, noting that a silver lining of breast cancer is the community of women survivors who support one another.
Wilton’s Andrea Farhi says it took her three months before she was ready to join a support group. “But once I did, I found it really helpful to talk to other women who are dealing with the same issues,” she says. “We all have jobs, kids, husbands and can 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 away with her husband and two young children. “Herceptin is one of the newer chemos that 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 with a senior management position with a 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 had 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 just 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 a top breast cancer researcher. “So I’ve benefited from cutting-edge drugs like Darnestra, 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 positivity 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. 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 genes, her reaction was a mixture of relief and frustration. “Why then did I have breast cancer?” she says. “I had breastfed my babies and done my yearly checkups and mammograms? It made no sense.”
When it comes to genetics, hematologist and oncologist Richard Zelkowitz, M.D., 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 BRCA1 and BRCA2, which carry 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, agrees. As for the new DNA variations recently identified as predictors for breast cancer, but at a lower risk level, he suggests that it is much too early to tell. “The media jump on every little thing. I read about so-called scientific advances before I have 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 that 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 Compo Beach 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 and needing advice and reassurance. “Helping another person,” Cissy says, “helps me. Nobody should have to deal with this alone.”