COLUMBUS, Ohio—Hearing the words, “You have cancer,” is immediately upsetting. “That distress can echo through the years, negatively affecting a person’s quality of life [QOL] long after the initial diagnosis of cancer,” said Betty R. Ferrell, PhD, RN, research scientist, City of Hope National Medical Center. She spoke at a conference on cancer survi-vorship sponsored by the James Cancer Hospital and Solove Research Institute at Ohio State University. Indeed, she said, in a survey of cancer survivors, distress over initial diagnosis was ranked as the single most negative influence on quality of life, worse than fear of recurrent cancer, fear of cancer spreading, or physical symptoms like fatigue.
“The moment of initial diagnosis was still creating much distress in cancer survivors 5, even 10 years after the fact,” Dr. Ferrell said. “So many of our patients’ ongoing problems are reflected in their initial diagnosis.”
This distress is a problem that can be addressed by health care professionals, she said, since much of the reported anguish was related to the manner in which the initial diagnosis was revealed to the patient.
Other persistent problems reported by survivors include family distress, sexuality concerns, psychological distress over cancer treatment, and uncertainty over the future. These findings were derived from a quality of life survey containing over 40 items in four categories (physical, psychological, social, and spiritual well-being) mailed to the membership of the National Coalition for Cancer Survivorship (Oncology 11:565-568, 1997). At the time of the survey, the group had 1,200 members, and 687 (57%) responded. The predominant diagnosis among those responding to the survey was breast cancer (43%).
News on an Answering Machine
Through interviews and focus groups, Dr. Ferrell discovered that many women learned they had cancer from a message on their answering machine at the end of a work day. Many times, a child or teenager in the family listened to the answering machine message before the woman did and learned of the diagnosis first.
“Patients want to hear the initial diagnosis from their physician in person and in private,” Dr. Ferrell said. She advised physicians not to tell patients the diagnosis in a hallway or in a shared room with another patient behind a curtain. “Show patients with your body language that you have time to answer questions,” she said. “Do we tell standing with our hand on the doorknob,” she asked, “or do we sit down and look at the patient?”
The time of initial diagnosis is not the time for a 20-minute discussion of treatment options. “The patient can’t hear beyond, ‘You have cancer.’ Spend your time answering questions rather than giving out information,” she said, “and encourage patients to bring a support person with them to help listen and ask questions.”
‘Physicians Should Give Hope’
Finally, Dr. Ferrell said, the physician should give hope. “Emphasize any positive news regarding the type of cancer or survival rates,” she said. “Even if survival odds are poor, emphasize the percentage who do survive. You can say, ‘Even though the numbers in the studies aren’t good, we know that you’re strong, and we know that the way individuals cope is very important.’”
The health care provider should also give patients a message of nonaban-donment. “Tell your patients that regardless of what happens with the tumor, you will work to give them good quality of life and good symptom control.”
Breaking bad news is a skill that is learned, Dr. Ferrell said. “It’s learned by practicing and sitting down and talking to your patients and asking them what helped.”
To help physicians learn these skills, the American Medical Association has just launched a training program known as Education for Physicians on End of Life Care (EPEC),” she said. The 12-module program includes information on communication in addition to such issues as bereavement, managing pain, and legal and ethical topics.
Seasons of Survival
Cancer survivorship has its own distinct “seasons of survival,” Dr. Ferrell said. She and her colleague, Karen Hassey Dow, PhD, RN, have identified distinct stages of survivorship: initial diagnosis, initial treatment, remission, first relapse, subsequent treatment, second or third relapse, and ultimate cure or death. “As patients move through these seasons, their needs are unique,” she said. “It is a very different thing to hear the first diagnosis and the first relapse.”
In the previously mentioned survey, cancer survivors reported the worst outcome overall in the area of psychological well-being, she said. Based on scores of 0 (worst outcome) to 10 (best outcome), survivors’ mean scores were 7.78 for physical well-being, 6.62 for social well-being, 6.59 for spiritual well-being, and 5.88 for psychological well-being.
Although physical symptoms stop being a key priority for many survivors, her research confirmed that many survivors still have pain, including peripheral neuropathy, postsurgical syndromes, and postradiation pain, Dr. Ferrell said. But patients are reluctant to report pain to their physicians.
“Our survivorship groups are often the least likely to complain about pain because they’re so glad to be alive,” she said. Health care providers need to encourage patients to report pain.
“The period of survivorship is also a period when families need support,” she said. Although the patients surveyed felt that they were doing well personally, they reported that their spouses and children were distressed. Family distress, a specific item on the survey, received one of the lowest scores on the survey.
Another major source of misery was the item “uncertainty,” included in the area of spiritual well-being. “Every day is spent not knowing how to survive,” Dr. Ferrell said. “Patients are confused. Should they work less in order to enjoy family and friends? Or should they work harder and prepare financially for an unkind future?”
Dr. Ferrell said her research found that cancer’s impact was not universally negative. Survivors also described positive benefits that have the potential of balancing the negative affects and improving quality of life.
These benefits included a greater recognition of family support and inner strength, as well as an increased sense of faith or spirituality. Some survivors also described a greater ability to set priorities and find their life’s meaning. For some, coming to terms with their own mortality was a positive gain from their cancer experience.
“The notion of cancer as a chronic illness is especially true today, and it will become more and more true with further advances in treatment,” Dr. Ferrell said. “As a result, we need to better understand the unique needs of cancer survivors,” she said. Cancer is a life-altering experience. “Once you hear the words ‘You have cancer,’ life is forever changed,” she said.
