To propose a shift in the para-
digm of survivorship in genetic
Published articles and research
Previous models of survivorship
are insufﬁcient to address the
evolving needs of patients and
families with heritable cancers.
The construction of a new model
of survivorship is needed to ad-
dress the unique concerns of indi-
viduals who have undergone he-
reditary cancer risk assessment
Health care providers must be
familiar with the recommenda-
tions for treatment, surveillance,
and follow-up care for individuals
and families with heritable can-
cers to maximize their quantity
and quality of life.
ITH THE advent of genomic medicine, prior
conceptualizations of cancer survivorship
are insufﬁcient to guide the delivery of care
to a growing population of patients and fam-
ilies with heritable diseases. The purpose of
this article is to propose a new paradigm of survivorship related to
hereditary cancer susceptibility. Speciﬁcally, this article will dis-
cuss two scenarios that illustrate survivorship issues: (1) when a
patient has been diagnosed with a heritable cancer; and (2) when
a person has inherited a genetic predisposition to cancer but does
not have the disease. The authors propose that there has been a
shift in the paradigm and not just a change in the context of the
meaning of survivorship as it relates to the diagnosis of or risk of
a heritable cancer. This paradigm shift must be understood to
address the survivorship issues in genetic cancer care. Brief case
studies will illustrate the two scenarios.
What does it mean to be a survivor? In cancer care the terms
“survivor” and “survivorship” cover a range of states, from mere
existence despite disease to total cure. The concept of survivorship
applies to many aspects of life after cancer. Quality of life has been
called the most frequent and important measurement of survival
however, even when quality of life is dismal, one is still surviving.
Consequently, conceptual models of survivorship have changed as
the options for health care have changed.
The term “survivorship” was historically used to describe family
members that survived the loss of a loved one to cancer.
cancer care offered limited treatments, rare cures, and little pros-
pect of hope for patients and their families, the model for survi-
vorship focused on helping family members grieve and accept
personal loss. As treatments improved, patients lived longer and
survivorship was redeﬁned in terms of disease-free intervals. A
newer model of survivorship was constructed with issues faced by
the patient who responded to treatment, went into remission, or
Linda A. Jacobs, PhD: Coordinator, Living
Well After Cancer Program, Clinical Assis-
tant Professor, Abramson Cancer Center,
University of Pennsylvania, Philadelphia,
PA. Ellen Giarelli, EdD: Research Assistant
Professor, University of Pennsylvania,
School of Nursing, Philadelphia, PA.
Address correspondence to Linda A. Ja-
cobs, PhD, RN, BC, Living Well After Can-
cer Program, University of Pennsylvania
Cancer Center, 34th and Spruce Sts, 14
Penn Tower #1428, Philadelphia, PA
© 2004 Elsevier Inc. All rights reserved.
Seminars in Oncology Nursing, Vol 20, No 3 (August), 2004: pp 196-202