Yale Bulletin and Calendar

March 23, 2007|Volume 35, Number 22

The Connecticut Challenge Survivorship Clinic at the Yale Cancer Center helps individuals like Jackie Michaud of Wallingford (left), a former breast cancer patient, with the transition to life after treatment. Nutrition counselor Maura Harrigan (right) helps the cancer survivors develop a healthy diet to aid their recovery.

In Focus: Challenge Survivorship Clinic

Program helps former cancer patients
return to their 'regular lives'

For several months after Jackie Michaud completed a course of radiation treatment for breast cancer last fall, she felt a little like she was in limbo: alternately relieved and worried.

She credits her recent visit to the Connecticut Challenge Survivorship Clinic at the Yale Cancer Center with helping her transition into a new period in her life.

"It was like a graduation for me," says Michaud, a Wallingford resident. "After the clinic visit, I was able to say, 'Okay, I'm really done with my treatments and I can move forward.'"

Started in October 2006, the Survivorship Clinic is dedicated to helping cancer survivors like Michaud live healthy, cancer-free lives. The clinic is the first in the state of Connecticut -- and one of only about a dozen in the country -- to focus on the specific needs of cancer survivors -- those who have already completed their treatments. Located in the Yale Physicians Building and open each Monday, the clinic is offered for free to any cancer survivor in the state.

In addition to helping prevent and remedy any long-term complications resulting from treatments, the clinic is devoted to helping cancer survivors "maximize their health, quality of life and longevity" by providing wellness education, psychosocial support, nutritional guidance, exercise and fitness recommendations, and complementary therapies, according Dr. Kenneth Miller, the medical director of the clinic and an oncologist who specializes in pain and symptom management as well as survivorship issues.

Miller, an assistant professor of medical oncology at the Yale Cancer Center, is among the clinic's five core staff members who see cancer survivors during a one-time, nearly three-hour visit. During this visit, survivors also meet with advanced practice nurse Mary Lou Siefert, physical therapist Scott Capozza, social worker Lina Chase and registered dietician Maura Harrigan. The clinic's coordinator, Hilarie Carrieri, schedules patient visits and serves as an information resource.

More than 75 survivors have visited the clinic since it began several months ago. Some are referred by their own physicians and nurses, while others have heard about the clinic through word-of-mouth or newspaper advertising. Most were recently treated for cancer.

"We wouldn't turn away a 5- or 10-year survivor," says Carrieri, "but the majority of people who have shown interest in using this service have only recently completed their treatment. We are here to help anyone who has finished active cancer treatment -- whether surgery, radiation, chemotherapy or other therapies."

The Survivorship Clinic is funded by the Connecticut Challenge, an annual non-competitive bike ride that raises money specifically for the clinic. Now in its third year, the benefit ride -- open to both novice and experienced cyclists who participate in their choice of 12-, 25-, 50- or 100-mile rides -- raised $500,000 last year in support of the new Yale Cancer Center service. This year's ride will be held on Saturday, July 28, in Fairfield, Connecticut.

Miller says he saw firsthand the need for such a clinic after witnessing his own wife, Joan, recover from leukemia nearly eight years ago.

"While I've been an oncologist for 20 years, it was a real eye-opener for me to observe, on a daily basis in my own home, how difficult the time is after treatment," he explains. "You are not perfect and your life does not just go back to normal when treatment ends. There are day-to-day issues of fatigue, depression, integrating back into a family again after you've been disabled, among others. When you finish the active part of your treatment, you're still coping with the fall-out of the experience. Recovering is a process, and our goal at the clinic is to help people in that process, and hopefully, empower them to get back to their regular lives."

Prior to their clinic visit, patients complete a personal history form that asks them to describe the type of cancer and treatment they had as well as current symptoms -- treatment-related or not -- they are experiencing. They are also asked to rate their emotional and physical health and to describe some of their chief concerns related to survivorship. In addition, they are queried about their family cancer history and their exercise routines both before and since their cancer diagnosis.

On the day of the clinic visit, patients undergo a physical assessment and possibly other tests to screen for complications resulting from their prescribed treatments. After meeting with the various specialists, clinic visitors are given a written, individualized summary that considers such facets in their recovery as nutrition, exercise, physical therapy and emotional support, and includes information related to health screening and risk reduction as well as other issues. This summary is also sent to the patient's oncologist or primary caregiver.

Dr. Kenneth Miller, medical director of the Connecticut Survivorship Clinic, talks with Jackie Michaud, who says her visit to the clinic served as a "graduation" from her breast cancer treatment.

For most patients, the one-time visit is enough to help guide them through the period of transition they experience when their treatment has ended, but in some cases, patients ask for, and are encouraged to return for, follow-up visits.

"For many, just having the opportunity to talk about issues they have -- and to have their thoughts and feelings validated -- is enough," says Miller. "When they come to the clinic, the patients are not at their most distressed, but they want clarity about what lies ahead. By giving survivors an individually tailored plan for exercise, nutrition and other concerns, our hope is that that they leave with some insight, empowerment and, hopefully, a feeling of calmness."

When meeting with patients in her role as social worker, Chase says, the biggest concern survivors express is their fear of a recurrence of cancer.

"Most of them feel either low- or high-level anxiety about the future, particularly when it's time for check-ups and testing," she comments. "It's a universal focus."

Chase and other clinic staff members discuss the option of genetic counseling and testing with survivors who are especially concerned with hereditary cancers or the risk of developing another cancer. All survivors are informed that they can learn more about this process at the Cancer Genetic Counseling Program at the Yale Cancer Center. If necessary, they are also referred to other specialists.

According to Chase, being diagnosed with cancer may also bring other personal issues to the fore.

"There's a way that having a diagnosis of cancer and going through treatments connects people with other losses and experiences in their lives that have made them feel vulnerable," the social worker explains. "I always say that these old wounds are being opened for cleansing."

Other survivors speak with Chase about issues surrounding intimacy and body image, particularly those who have been physically altered by cancer. Some are grappling with such practical questions as whether or not to return to jobs after having been on leave during their treatment.

A cancer survivor herself, Chase recently began a weekly support group for survivors, and she welcomes clinic visitors who feel the need for more ongoing support to these sessions.

In her role as advanced practice nurse, Siefert addresses issues relating to the education, information needs and the physical and emotional health of survivors as they recover.

"Fatigue is always the number-one symptom they describe, and I tell patients that although we don't always understand completely why the fatigue is present and why it's so profound, it is universally the most distressing symptom," comments Siefert. "Fatigue is cumulative -- and it doesn't go away as soon as treatment stops. When I tell survivors this, it really helps to validate their experience, as many have friends and family members who expect them to return to their usual activities as soon as treatment ends. This is a big problem for survivors -- when those who are close to them don't understand that that they are not quite ready for that."

Siefert notes that for all survivors, having cancer is a life-transforming event.

"You can never go back to a life without cancer," she says.

With its comprehensive focus on both the emotional and physical aspects of cancer diagnosis, treatment and recovery, the Survivorship Clinic "helps people get on the right course," the Yale nurse says. However, Siefert emphasizes that the clinic visit "is not meant to replace oncologic or primary care."

In his physical therapy session, Capozza -- incidentally also a cancer survivor -- discusses with his patients their physical challenges, some of which are due to range-of-motion or pain issues following cancer treatment. He then formulates an individualized therapeutic exercise program that is mindful of his patients' stage of recovery.

Exercise is considered a key component to staying healthy for cancer patients, notes Miller. According to literature presented to all Survivorship Clinic patients, a recent study on five-year survival in breast cancer patients shows that approximately three hours a week of moderate-intensity, recreational physical activity before and after a diagnosis of breast cancer may help improve survival and, possibly, cognitive function.

The clinic's offering of nutrition guidance for survivors is also of special importance, says Miller, noting that research has shown that one-third of cancer deaths in the United States are due to poor diet. Survivorship Clinic participants are given an individualized nutrition plan in their meeting with dietician Harrigan.

Following their meetings with clinic specialists, survivors can also attend the periodic (usually weekly) mini-lectures sponsored by the Survivorship Clinic. These address a range of topics -- including, most recently, how to enhance self-image and confidence following cancer treatment and the importance of exercise.

Michaud, who also survived leukemia while a teenager, says that she is grateful that issues of survivorship -- which were not a focus of the medical community at the time of her first cancer experience -- are now being regarded.

"There was nothing around like this when I finished my leukemia treatment," she says. "I'm glad that there is a clinic like this nearby. The Survivorship Clinic helped reduce some of the worry I was feeling and made me more aware of what I need to be doing as far as exercise and nutrition are concerned. I'm now definitely exercising more, and I am trying hard not to give in to my sweet tooth and to eat healthy. The clinic helped me to focus on my overall well-being as I go forward."

Cancer survivors interested in visiting the clinic can call (203) 785-CARE or send e-mail to hilarie.carrieri@yale.edu. Individuals interested in riding or volunteering for the Connecticut Challenge can visit www.ctchallenge.org.

-- By Susan Gonzalez

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