Many people with cancer no longer accept their diagnosis passively.
Instead, they are arming themselves with cutting-edge information
about treatment options, tapping into on-line cancer resources,
and demanding to be active participants in their own health-care
decisions. Whereas previous generations of cancer patients deemed
their doctors omniscient decision-makers acting on their behalf,
many of today's cancer heath-care consumers are learning to be
smart shoppers, insisting on second opinions, sleuthing out medical
facts at the library, teaming up with peers for tips and encouragement,
and assessing their own treatment cost-benefit ratios.
One factor that contributes to this changing role for the cancer
patient is increased access to information, as television, newspapers,
popular magazines, and the Internet frequently report biomedical
breakthroughs even before they are published in medical journals
As patients seek partnerships with their physicians for decision-making
and health-care management, they add a different perspective to
risk-benefit ratios. Although a physician may not be eager to
try a treatment option that has an 80% to 90% failure rate, the
patient may gauge those odds as a 10% to 20% success rate, with
an eye toward optimizing the chances of success, perhaps in concert
with complementary therapies, such as visualization, guided imagery,
dietary regimens, exercise, yoga, self-hypnosis, biofeedback,
and stress reduction techniques. Together, the patient-physician
team can customize a treatment program composed of both traditional
and nontraditional therapies that provides the patient with a
sense of control, a better outlook, and an improved quality of
By gathering information and working as a partner with physicians,
the patient feels empowered to deal with the myriad psychosocial
disruptions that often accompany a cancer diagnosis. Nevertheless,
the impact of the physical and emotional changes imposed by cancer
and its treatment is still far-reaching. Patterns of eating, urination
and defecation, and energy expenditure must be managed, while
fertility, social stigma, and appearance alterations also demand
attention. Relationships with significant others may undergo a
polarization that paradoxically may serve as the impetus for ending
a relationship or mending a broken one, while interactions with
friends, acquaintances, and employers reinforce perceptions of
being different or damaged . People with cancer (and sometimes
their entire families) may be shunned by those who are part of
their normal support systems, as coworkers and friends may not
know how to respond to the scenario of suffering and death .
As today's cancer patients assume more active roles in their health
care, members of their families also have taken on more responsibilities.
Because patients are now discharged from hospitals earlier, much
more of their nursing care must be provided at home by family
members. Growing numbers of people, usually women, leave their
jobs to provide home health care, and the family's free time is
taken up with caregiving duties .
In the past, the family member who was left behind after the loved
one died was referred to as the "cancer survivor." With
the advent of technologies that are curing people of some cancers
or extending their lives, however, the medical community began
defining cancer survivors as those whose disease has been in remission
for 5 years or more--a goal that few pancreatic cancer patients
have reached. Now, that limited definition of "survivor"
has been challenged by the cancer community because it not only
overlooks people who are receiving therapy and living with cancer
as a chronic illness but also fails to take into account the newly
diagnosed, who are nonetheless surviving daily battles. An expanded
definition of cancer survivors, which has been adopted by the
National Coalition for Cancer Survivorship (NCCS), has thus come
to encompass all people with cancer--from the moment of diagnosis
through the balance of their lifetime .
The journey that patients and their families begin after a cancer
diagnosis has been described as a series of "seasons"
or "stages" of survival--from the initial shell shock
of diagnosis through decision-making and treatment to post-treatment
Acute Stage--The acute stage of survivorship begins with
the diagnosis, when patients are confronted with their own mortality,
and extends through the strenuous medical, surgical, and radiologic
treatments. Fear and anxiety are constant elements of this phase,
along with pain resulting from both the illness and treatment
Extended Survival--For the few people with pancreatic cancer
who graduate from the acute stage, a season of extended survival
begins. They have completed the basic, rigorous course of treatment
and enter a phase of "watchful waiting," with periodic
examinations and intermittent therapy. Once therapy is finished,
access to treatment-based support systems is often abruptly severed,
and support from family members and friends may also diminish--heightening
the need for local and national mutual-aid networks and survivor
Permanent Survival--The stage termed "permanent survival"
(roughly equated with being "cured") brings new challenges.
Survivors must cope with physical disabilities due to surgery
and the side effects of other treatments, as well as the psychological
traumas of fear of recurrence, social stigma, and job discrimination
. The small, but hopefully growing number of people who become
longer-term survivors of pancreatic cancer can provide tremendous
aid and inspiration to fellow survivors of this disease by becoming
involved in support networks.
Years ago, people with cancer spent much more time in hospitals.
Today's managed-care system finds it fiscally prudent to discharge
patients as soon as possible, and little time is allowed for health-care
professionals to provide patients with the information that they
need to adjust to their terrifying new situation. This gap must
be filled by hospital- or community-based support groups that
allow the "rookie" patient, who is newly diagnosed or
in treatment, to talk with veteran survivors.
The NCCS serves as a clearinghouse for the many cancer-related
organizations, and addresses issues that affect the quality of
living of cancer survivors . To help survivors become savvy
consumers of medical services, the NCCS recommends ways that patients
can advocate for themselves from the moment that they are diagnosed,
including locating resources and effectively communicating with
Once survivors feel more confident about their course of treatment,
they may be ready to share feelings, experiences, and information
with fellow survivors within local support groups, on computers,
or through art or writing. As survivors discuss their mutual problems,
such issues as insurance and employment discrimination, fear of
recurrence, social stigma, and access to continued medical follow-up
surface that provoke some survivors to speak out to a larger audience.
Nationwide, NCCS members are adding the consumer voice to discussions
about research priorities, supportive services, legal rights of
cancer survivors, and public policy decisions--through expert
testimony before Congressional committees, appearances on talk
shows, and coverage in newspapers, magazines, and medical journals.
Through the cancer survivorship movement, people with cancer learn
that they are not alone, that they can choose to work in partnership
with health-care professionals to manage their disease, and that
they have available a plethora of resources to assist them in
their fight for quality survival after cancer.
1. Leigh S: Cancer survivorship: A consumer movement. Semin Oncol
2. Loescher LJ, Clark L, Atwood JR, et al: The impact of the cancer
experience on long-term survivors. Oncol Nurs Forum 17:223-229,
3. Welch-McCaffrey D, Hoffman B, Leigh SA, et al: Surviving adult
cancers, part 2: Psychosocial implications. Ann Intern Med 111:517-524,
4. Ferrell BR, Dow KH, Leigh S, et al: Quality of life in long-term
cancer survivors. Oncol Nurs Forum 22:915-922, 1995.
5. Leigh S: Myths, monsters, and magic: Personal perspectives
and professional challenges of survival. Oncol Nurs Forum 19:1475-1480,
6. Mullan F: Seasons of survival: Reflections of a physician with
cancer. N Engl J Med 313:270-273, 1985.
7. Leigh S, Logan C: The cancer survivorship movement. Cancer
Invest 9:571-579, 1991.
8. Muzzin LJ, Anderson NJ, Figueredo AT, et al: The experience
of cancer. Soc Sci Med 38:1201-1208, 1994.
9. Leigh SA: Cancer rehabilitation: A consumer perspective. Semin
Oncol Nurs 8:164-166, 1992.