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Looking back, Julie Silver, MD, realized that one of the defining moments of her breast cancer treatment was when her 4-year-old daughter complained about her mommy "just sitting around." As a rehabilitation physician who prided herself on being active with her three young kids, Silver tried to keep up her strength during treatment, but sometimes it just wasn't possible. She had constant pain in her hands and feet that made the easiest tasks arduous and old joys like running around the backyard next-to-impossible.
One friend noticed a pattern. She wouldn't hear from Silver until eight days after her biweekly chemotherapy infusions at Dana-Farber, when her e-mails or calls would suddenly come in a torrent. A few days later, when another chemo dose loomed, she'd grow silent again.
"People feel that healing is a fairly smooth process – you go from having cancer to feeling better and better, and then you're done – but it's not that simple," explains Silver, who was 38 when first diagnosed in 2003 and is now in remission. (Silver leads patient workshops on survivorship at Dana-Farber.) "Setbacks and plateaus are part of the process. Usually you go to a doctor who gives you treatments that make you feel better, but with cancer you may feel worse before you can get better.
"And it's not always during the treatment itself that you feel your worst," she adds. Patients who are getting chemotherapy every second or third week, for instance, say they often feel sicker during their "off " weeks as their bodies try to recover from the physical onslaught of drugs. Since they are usually home during these periods, they don't have the constant reassurance of clinicians and support staff, sometimes resulting in stress for them and their families. And while some side effects associated with cancer therapy such as hair loss, nausea, and lymphedema (arm or hand swelling) are well known, there are many other emotional and physical "ups and downs" experienced by both adults and children during and after treatments.
Whether it's depression, dramatic mood swings, or fatigue that can make even simple conversations seem daunting, patients and families often must deal with these less publicized challenges along with the rest.
"I went to the mall the other day with some friends and had a great time, but while we were driving home I just started crying," says Von Marie Rosario, a 19-year-old being treated for Hodgkin lymphoma in Dana-Farber's Jimmy Fund Clinic. She attributes her frequent mood swings to the steroids she takes every other day in conjunction with her weekly chemotherapy. "I get easily angry and easily sad, and it's hard for my friends to understand it."
Family members who do understand can also find this emotional roller coaster taxing. "It affects everybody in the house," says Karen Bernard, whose 16-year-old daughter, Kelley, is being treated in the Jimmy Fund Clinic for acute lymphocytic leukemia (ALL). "She's a friendly, warm-hearted person, so when she starts lashing out during her big steroid week, it really stands out."
Fatigue can be another problem. Rosario took a leave from her job at a clothing store when she started treatment in April, and even going back to a few shifts a week has been difficult. Vinnie Corsaro can relate; a 56-year-old carpenter and teacher, he was forced to stop work last year during treatment at DFCI for tonsil and lymph node cancer, and still has ringing in his ears and numbness in his feet months after finishing chemotherapy.
For Corsaro, however, the toughest challenge has been the impact on his taste buds – another side effect he hopes will disappear in a year or two. "Most things don't taste very good, and I don't enjoy cooking anymore," he says. "Sometimes the cure feels worse than the disease."
Dana-Farber is taking steps to address such feelings. Each new patient and his or her family has access to a clinical social worker, either through the Care Coordination Department of the Dana-Farber/Brigham andWomen's Cancer Center (DF/BWCC) for adult patients or the Jimmy Fund Clinic's Pediatric Psychosocial Unit, run in conjunction with Children's Hospital Boston. Beyond psychosocial assessments and interventions, social workers tackle both emotional and logistical concerns.
In addition to meeting individually with patients, DF/BWCC psychologist Karen Fasciano, PsyD, and social worker Mary Ann Holcombe, LICSW, lead group sessions in which they teach emotional coping skills such as stress management strategies to alter negative thoughts, and behaviors to change one's mood. For example, they encourage patients to "schedule" worry time so they don't let fears overwhelm them, and to organize time or activities with loved ones that are free from discussions about cancer.
Another teaching device they use is cognitive restructuring. "We listen to peoples' thoughts and work with them to develop more adaptive ways of thinking about the same situation," Fasciano explains. "Instead of saying, 'Cancer has taken over my life,' we encourage them to replace it with something like, 'Cancer has taken over part of my life, but I'm not going to let it control all of my life.'"
Even when patients are too young to understand the implications of a diagnosis, the same fears are often there. In more than 25 years as a pediatric oncologist at Dana-Farber, Holcombe Grier, MD, has learned the importance of respecting young patients' intellects and easing their anxiety by always including them in conversations and decision-making about their care. And in the case of teenage patients, asking parents to leave the room so he can discuss more private matters like drug use and sex can both calm patients and win their trust and respect.
"At almost any age, except for the youngest babies, there is a desire to exert some control over your environment," Grier says. "When [medical] residents are doing rounds with me and ask a child, 'Do you mind if I listen to your chest?' I correct them.You're not giving the kid a choice; you're going to listen to it no matter what.You need to be thoughtful and say, 'I have to listen to your chest. Do you want me to do it here, or do you want to stand over by Mommy?'"
Grier's colleague Lewis Silverman, MD, director of the Jimmy Fund Clinic, says that clinic personnel are always working to better understand the side effects young patients face from chemotherapy and steroid treatment, and alter dosages when possible. Dana-Farber is partnering with seven other hospitals to conduct a series of clinical trials involving ALL, the most common childhood cancer, with 5,200 new cases annually (most of them children). In the current trial, hundreds of pediatric patients ages 2 to 18 and their parents are being surveyed on the impact of the chemotherapy drug asparaginase on their quality of life.
"There is something we've identified as the 'asparaginase blues,' where the many patients who take this drug for the typical 30-week period lose their energy and appetite," explains Silverman. "We want to understand how these symptoms change over time, and whether or not different types of asparaginase may have different results."
In another effort beginning this fall, Dana-Farber will allow adult patients to log on to the secure Patient Gateway Web site and report symptoms and side effects they are experiencing while on different drugs. "Our concern is that patients who come into the hospital every three weeks may not remember how they felt each week in between," says Saul N.Weingart, MD, the Institute's vice president for patient safety. "If they can track symptoms at home and report them each week when prompted, we hope it will give them a sense of power and control over their disease and allow us to better help them.We still want patients to contact us directly with any serious symptoms, but we envision building a 'self-help' section and creating opportunities for patients to interact electronically with a doctor or nurse practitioner."
In the meantime, patients and clinicians do what they can to work around the challenges. When it's clinically safe, physicians will occasionally put off starting a new series of chemotherapy drugs or steroids by a few days so a patient can enjoy a birthday party or other major event. One woman remembers her late husband working with his doctor to rearrange a chemo treatment around an upcoming Bruce Springsteen concert.
"When I'm on my five-day dose of steroids, I'm claustrophobic, can't stand messes, and am generally not a pleasant person to be around," says Kelley Bernard, who had to give up dancing and most of her sophomore year of high school during her ALL treatment. "I've just learned to make the most of my 'good' weeks and hang out with my friends or go to the gym as much as I can then. If I give people my look, they know I need my space."
While the cancer treatment itself has been grueling for Bernard and her family, she and others agree that the emotional, physical, and logistical challenges during and between it have often been just as taxing. Now they're eager for a return to their old routines – whether that's dancing, enjoying the taste of their gourmet dinners, or simply chasing their kids around the backyard.
Fall/Winter 2008 Table of Contents