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Survivorship and Pancreatic Cancer: The Role of Advocacy

Survivorship and Pancreatic Cancer: The Role of Advocacy

ABSTRACT: The past 20 years have witnessed important changes in the manner in which many people with cancer are opting to deal with their disease. In the past, patients yielded to their physicians' treatment choices and assumed that they would be told all they needed to know about their condition. Today, many people with cancer are taking more active, assertive roles, demanding second opinions and treatment option information, and seeking partnerships with their physicians in making decisions and managing their overall health-care programs. This article describes the growing cancer survivorship movement, explores the varying levels of involvement that people with pancreatic cancer may choose, and highlights resources available to help individuals and their families hone their survival skills. [ONCOLOGY 10(Suppl):38-39, 1996]


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 [1].

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 life.

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 [2]. 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 [3].

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 [4].

Pancreatic Cancer Survivorship: From Diagnosis Through Treatment and Beyond

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 [5].

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 aftermath.

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 [6].

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 organizations [7].

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 [8]. 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.

National Coalition for Cancer Survivorship

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 [9]. 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 health-care providers.

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 21:783-786, 1994.

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, 1990.

3. Welch-McCaffrey D, Hoffman B, Leigh SA, et al: Surviving adult cancers, part 2: Psychosocial implications. Ann Intern Med 111:517-524, 1989.

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, 1992.

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.

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