Survivorship and Pancreatic Cancer: The Role of Advocacy

September 1, 1996

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

ABSTRACT: The past 20 years have witnessed importantchanges in the manner in which many people with cancer are optingto deal with their disease. In the past, patients yielded to theirphysicians' treatment choices and assumed that they would be toldall they needed to know about their condition. Today, many peoplewith cancer are taking more active, assertive roles, demandingsecond opinions and treatment option information, and seekingpartnerships with their physicians in making decisions and managingtheir overall health-care programs. This article describes thegrowing cancer survivorship movement, explores the varying levelsof involvement that people with pancreatic cancer may choose,and highlights resources available to help individuals and theirfamilies hone their survival skills. [ONCOLOGY 10(Suppl):38-39,1996]

Introduction

Many people with cancer no longer accept their diagnosis passively.Instead, they are arming themselves with cutting-edge informationabout treatment options, tapping into on-line cancer resources,and demanding to be active participants in their own health-caredecisions. Whereas previous generations of cancer patients deemedtheir doctors omniscient decision-makers acting on their behalf,many of today's cancer heath-care consumers are learning to besmart shoppers, insisting on second opinions, sleuthing out medicalfacts 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 cancerpatient is increased access to information, as television, newspapers,popular magazines, and the Internet frequently report biomedicalbreakthroughs even before they are published in medical journals[1].

As patients seek partnerships with their physicians for decision-makingand health-care management, they add a different perspective torisk-benefit ratios. Although a physician may not be eager totry a treatment option that has an 80% to 90% failure rate, thepatient may gauge those odds as a 10% to 20% success rate, withan eye toward optimizing the chances of success, perhaps in concertwith complementary therapies, such as visualization, guided imagery,dietary regimens, exercise, yoga, self-hypnosis, biofeedback,and stress reduction techniques. Together, the patient-physicianteam can customize a treatment program composed of both traditionaland nontraditional therapies that provides the patient with asense of control, a better outlook, and an improved quality oflife.

By gathering information and working as a partner with physicians,the patient feels empowered to deal with the myriad psychosocialdisruptions that often accompany a cancer diagnosis. Nevertheless,the impact of the physical and emotional changes imposed by cancerand its treatment is still far-reaching. Patterns of eating, urinationand defecation, and energy expenditure must be managed, whilefertility, social stigma, and appearance alterations also demandattention. Relationships with significant others may undergo apolarization that paradoxically may serve as the impetus for endinga relationship or mending a broken one, while interactions withfriends, acquaintances, and employers reinforce perceptions ofbeing different or damaged [2]. People with cancer (and sometimestheir entire families) may be shunned by those who are part oftheir normal support systems, as coworkers and friends may notknow how to respond to the scenario of suffering and death [3].

As today's cancer patients assume more active roles in their healthcare, members of their families also have taken on more responsibilities.Because patients are now discharged from hospitals earlier, muchmore of their nursing care must be provided at home by familymembers. Growing numbers of people, usually women, leave theirjobs to provide home health care, and the family's free time istaken up with caregiving duties [4].

Pancreatic Cancer Survivorship: From DiagnosisThrough Treatment and Beyond

In the past, the family member who was left behind after the lovedone died was referred to as the "cancer survivor." Withthe advent of technologies that are curing people of some cancersor extending their lives, however, the medical community begandefining cancer survivors as those whose disease has been in remissionfor 5 years or more--a goal that few pancreatic cancer patientshave reached. Now, that limited definition of "survivor"has been challenged by the cancer community because it not onlyoverlooks people who are receiving therapy and living with canceras a chronic illness but also fails to take into account the newlydiagnosed, who are nonetheless surviving daily battles. An expandeddefinition of cancer survivors, which has been adopted by theNational Coalition for Cancer Survivorship (NCCS), has thus cometo encompass all people with cancer--from the moment of diagnosisthrough the balance of their lifetime [5].

The journey that patients and their families begin after a cancerdiagnosis has been described as a series of "seasons"or "stages" of survival--from the initial shell shockof diagnosis through decision-making and treatment to post-treatmentaftermath.

Acute Stage--The acute stage of survivorship begins withthe diagnosis, when patients are confronted with their own mortality,and extends through the strenuous medical, surgical, and radiologictreatments. 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 cancerwho graduate from the acute stage, a season of extended survivalbegins. They have completed the basic, rigorous course of treatmentand enter a phase of "watchful waiting," with periodicexaminations 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--heighteningthe need for local and national mutual-aid networks and survivororganizations [7].

Permanent Survival--The stage termed "permanent survival"(roughly equated with being "cured") brings new challenges.Survivors must cope with physical disabilities due to surgeryand the side effects of other treatments, as well as the psychologicaltraumas of fear of recurrence, social stigma, and job discrimination[8]. The small, but hopefully growing number of people who becomelonger-term survivors of pancreatic cancer can provide tremendousaid and inspiration to fellow survivors of this disease by becominginvolved 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 dischargepatients as soon as possible, and little time is allowed for health-careprofessionals to provide patients with the information that theyneed to adjust to their terrifying new situation. This gap mustbe filled by hospital- or community-based support groups thatallow the "rookie" patient, who is newly diagnosed orin treatment, to talk with veteran survivors.

The NCCS serves as a clearinghouse for the many cancer-relatedorganizations, and addresses issues that affect the quality ofliving of cancer survivors [9]. To help survivors become savvyconsumers of medical services, the NCCS recommends ways that patientscan advocate for themselves from the moment that they are diagnosed,including locating resources and effectively communicating withhealth-care providers.

Once survivors feel more confident about their course of treatment,they may be ready to share feelings, experiences, and informationwith 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 ofrecurrence, social stigma, and access to continued medical follow-upsurface that provoke some survivors to speak out to a larger audience.Nationwide, NCCS members are adding the consumer voice to discussionsabout research priorities, supportive services, legal rights ofcancer survivors, and public policy decisions--through experttestimony before Congressional committees, appearances on talkshows, and coverage in newspapers, magazines, and medical journals.

Through the cancer survivorship movement, people with cancer learnthat they are not alone, that they can choose to work in partnershipwith health-care professionals to manage their disease, and thatthey have available a plethora of resources to assist them intheir fight for quality survival after cancer.

References:

1. Leigh S: Cancer survivorship: A consumer movement. Semin Oncol21:783-786, 1994.

2. Loescher LJ, Clark L, Atwood JR, et al: The impact of the cancerexperience on long-term survivors. Oncol Nurs Forum 17:223-229,1990.

3. Welch-McCaffrey D, Hoffman B, Leigh SA, et al: Surviving adultcancers, 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-termcancer survivors. Oncol Nurs Forum 22:915-922, 1995.

5. Leigh S: Myths, monsters, and magic: Personal perspectivesand professional challenges of survival. Oncol Nurs Forum 19:1475-1480,1992.

6. Mullan F: Seasons of survival: Reflections of a physician withcancer. N Engl J Med 313:270-273, 1985.

7. Leigh S, Logan C: The cancer survivorship movement. CancerInvest 9:571-579, 1991.

8. Muzzin LJ, Anderson NJ, Figueredo AT, et al: The experienceof cancer. Soc Sci Med 38:1201-1208, 1994.

9. Leigh SA: Cancer rehabilitation: A consumer perspective. SeminOncol Nurs 8:164-166, 1992.