Cancer inspires five psychologists to expand education, help others

By Jamie Chamberlin
Monitor staff

For psychologists Stephanie Colson-Stuhr, Stephanie Hutcheson, Elizabeth King, Lisa Obstfeld and Daniel Shapiro, expertise about human behavior couldn't really prepare them for a cancer diagnosis. But their battle with cancer empowered them to identify ways they could help other people cope with the disease.

One's experience with Hodgkin's disease, for instance, directed him toward improving physician-patient communication. Another turned her 's illustrations about chemotherapy into a nonprofit foundation to promote cancer education. Today, each of the five is healthy and thankful that cancer has given them an insight that broadened their work as a psychologist.

For Daniel Shapiro, PhD, undergoing treatment for Hodgkin's disease during college and graduate school steered him toward a career in psychology. He now teaches cancer patients to advocate for themselves, and helps doctors, medical students and psychologists work more effectively with cancer patients.

During graduate school at the University of Florida, Shapiro found his first opportunity to put his experience to use. One of his professors, aware he had survived cancer, asked him to visit a 16-year-old girl with Hodgkin's disease. She was a patient in the university medical center's bone-marrow transplant unit, where she had stopped communicating with her family and the hospital staff.

Initially, the patient avoided communicating with him, so Shapiro started visiting the girl daily between classes, doing his homework in her room. To be helpful, Shapiro looked for ways he could improve her quality of life. He learned, for example, that hospital staff frequently entered her room when she was using the toilet that had been setup for her in the middle of the room. Shapiro asked the girl's father to install a remote controlled warning light outside her door to help her direct her privacy. He also arranged for fewer nighttime interruptions and suggested her family and friends ask the girl's permission before they visited. These interventions gave the girl a greater sense of control and she started talking with him, her family and hospital staff, says Shapiro.

The girl died soon after her bone-marrow transplant. Several months later, Shapiro's own cancer relapsed and, ironically, he was placed in the same room as the girl. During his transplant, he experienced the same frustration and helplessness that had pushed her to silence. It was then that Shapiro saw a need to improve communication between cancer patients and hospital staff.

Now, as an assistant professor in the department of integrated medicine and psychiatry at the University of Arizona, he's helping cancer patients navigate the medical system--to become, in a sense, professional patients. He talks to patients at the University's Health Sciences Center about medical insurance and quality-of-life issues, and offers advice on how to communicate effectively with medical teams. Shapiro is also collaborating with psychologists Jonas Brombert, PsyD, and Simon Budman, PhD, to develop a formal patient preparation program to orient recently diagnosed cancer patients.

His work doesn't end with the patients. He also trains the physicians, nurses and oncologists who treat them--professionals, he finds, who often have trouble managing the stress of working with cancer patients.

"As part of their training they are taught to ignore their own needs," says Shapiro. "No one teaches them how to protect themselves or mourn their patients. I treat the whole system--if the nurses and doctors are in better shape, the patients will be in better shape."

Shapiro also counsels young doctors and medical students who sometimes cope with their own powerlessness by offering aggressive therapies to patients who are unlikely to benefit. He helps them understand the importance a patient attaches to quality of life. Shapiro also instructs psychology interns, psychiatry residents and medical students about effective patient communication strategies and stress management.

"I try to teach them that being fully human and taking care of themselves is just as important as their technical competence," he says.

A frequent national speaker, Shapiro also writes humorous and serious essays about his experiences, which have been read on National Public Radio, and will be published as a book next year. (One of his essays appears on page 34.)

One year after her diagnosis, Obstfeld worked with her oncologist, local physicians and the town's women's center to market the support group, and in two years it had grown from four members to 25. Obstfeld, who has been in remission for more than three years, focuses the group's discussion on coping strategies, body-image issues and relationships with family, friends and colleagues.

"At times the group is very light and the people just want to get to know one another," says Obstfeld, "and other times we talk about more serious issues such as fear of death."

Many group members have followed Obstfeld's lead by joining outside projects or programs to aid cancer patients. She has helped several women get involved with the Susan G. Komen Breast Cancer Foundation's Race for the Cure--a series of 5K runs held in 99 cities across the United States to raise money for breast cancer education and research--and Reach to Recovery, an American Cancer Society program that pairs women who are newly diagnosed with cancer with breast-cancer survivors who offer advice and support.

Obstfeld leads her group strictly as a facilitator, but attends another breast-cancer support group in the next county as a member. Attending the other group, which is not run by a mental health professional, has caused her to appreciate the decision she made to launch her group in Presque Isle.

"Groups that aren't run by mental health professionals are wonderful for dispensing information and for meeting people to share experiences," she says. "But I have concerns about what happens when a member falls apart or when there is a destructive atmosphere."

Obstfeld is currently working to develop a retreat center for women who are newly diagnosed with cancer. Staffed by health-care professionals, the center will provide a relaxing place to stay, she says, for women who need a calm atmosphere to make important decisions about treatment options.

Instead, King was confused and overwhelmed by her eight-year-old son's intense anger and frustration, and taken off guard by her 12-year-old daughter's aloof behavior and fear of getting cancer herself. King says the experience made her see the need to help other parents with cancer prepare for reactions and questions from their ren, as well as drastic changes in family life. She also wanted to produce a tool that parents could use to explain cancer to their ren.

King's son gave her an idea for how she could prepare parents and teach kids about cancer when she explained chemotherapy to him. He created stories and illustrations about a character named "Kemo Shark," who swam around in his mother's body eating cancer cells, and sometimes, eating healthy cells mistakenly, causing her to get sick.

"Kemo Shark became a metaphor for what was happening to my body," she says. "We didn't like it that he got some of the good cells, but it was good that he didn't miss the cancer cells."

When King completed her cancer treatment, she developed her son's stories into a ren's comic book called "Kemo Shark." She and her husband, attorney Charles Center, then founded a nonprofit foundation called KIDSCOPE, to raise money to distribute the comic book at no cost to parents, hospitals, psychologists and schools. King's next KIDSCOPE project was to create an educational video to prepare cancer patients for changes in family functioning and provide advice on communicating with ren. In the video, "My Mom Has Breast Cancer," King and other psychologists interview four women and seven ren about how cancer affected their family life. King and her ren tell their stories as well. Two of King's colleagues, Carol Webb, PhD, and Ann Hazzard, PhD, helped her develop the materials.

KIDSCOPE has distributed 20,000 copies of "Kemo Shark" and 10,000 videos to hospitals, pediatric psychologists, physicians, women's centers and schools across the country. Blockbuster Video stores stock the video in its free community section, and Glaxo/Wellcome, a pharmaceutical company, distributes the video and comic book to oncologists along with cancer medication.

KIDSCOPE has won two awards for its video and book: a Profiles in Progress award from the National Breast Cancer Awareness Month and a Spirit of Innovation award from Interhealth and 3M Health Care. But the best praise comes from the kids and parents across the country who write letters about how the materials have helped them, says King. Her favorite letter, from a mother of a 3-year-old boy with Hodgkin's disease, told how reading "Kemo Shark" to her son made him less frightened when he went to receive chemotherapy.

"When its time for him to get his treatment, he shouts "Go Kemo!" says King.

To request a copy of "My Mom Has Breast Cancer" and "Kemo Shark," contact KIDSCOPE, 3400 Peachtree Road, Suite 703, Atlanta, GA 30326, or visit the KIDSCOPE web site at www.kidscope.org

But because a strong support group quickly formed around her, Hutcheson managed to complete her internship only two months behind schedule. Her director helped Hutcheson create a flexible work schedule and her new colleagues organized a carpool to drive her to treatment each day.

"People always say that a strong social support system is essential when going through treatment," says Hutcheson. "And I am living proof of that."

Hutcheson wanted to provide other cancer patients with the kind of support she had at Emory, so when she returned to her native country, the Bahamas, to work as a rehabilitation psychologist she began volunteering with the Cancer Society of the Bahamas. As the education chair of the society, Hutcheson organizes seminars and workshops on cancer prevention and detection for church and service groups. Hutcheson publicizes cancer survivor stories, including her own, and organizes counseling seminars for cancer patients and their families.

Hutcheson also volunteers for a government program that sends crews to the various islands of the Bahamas to conduct cervical and prostate cancer screening and cancer education workshops. "The people we see there have very little education about cancer," she says. "But they are always glad to see us because they live in such small communities--it's often uncomfortable for them to visit their doctor for a screening," she says.

In May, Hutcheson attended the Second World Conference of Cancer Organizations, hosted by the Centers for Disease Control in Atlanta. There, she learned about cancer prevention, education and research programs around the world and hopes to use the information to expand cancer research in the Bahamas. She also plans to organize a day to honor cancer survivors and their families and to develop a survivor's speakers bureau to boost educational talks in the Bahamas.

Diagnosed with breast cancer in 1990, practitioner Stephanie Colson-Stuhr, EdD, continued to see patients while undergoing treatment. While it provided her with something else to focus on, she also found that her experience with cancer helped her relate better to patients who had experienced trauma.

"The whole experience really helped me understand pain, fear, despair and helplessness," she says. "And my clients, especially cancer patients, seem to understand that I get where they are coming from."

Colson-Stuhr now works with numerous cancer patients to help them identify parts of their lives that can become what work became for her--a place that cancer cannot touch. She helps cancer patients reprioritize their lives, communicate with their families and identify activities and hobbies that will reduce their daily stress. To reach more cancer patients, she and psychologist Howard Kunin, PsyD, started a small organization called C-SHARE to support and educate cancer patients in their community of Sudbury, Mass., a suburb of Boston. Through C-SHARE, Colson-Stuhr speaks to women's groups, church groups and service organizations about the importance of cancer screening and cancer's impact on family members and personal relationships. The main message she sends to people is that there can be life after cancer.

"Nothing is the same once you have gone through something like this, but there can be so much hope and a sense of inner peace that comes with it," she says. "Cancer can make a person stronger, and it can make life richer than ever."



Read our privacy statement and Terms of Use

Cover Page for this Issue

PsychNET®
© 1999 American Psychological Association

APA Home Page . Search . Site Map