COLUMBUS, OhioHearing the words, You have cancer,
is immediately upsetting. That distress can echo through the
years, negatively affecting a persons 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
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
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 time of initial diagnosis is not the time for a 20-minute
discussion of treatment options. The patient cant 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 arent good, we know that
youre strong, and we know that the way individuals cope is very
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.
Its 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
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 theyre 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 cancers 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 lifes 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