Article first published online: 14 JUN 2012
DOI: 10.3322/caac.21149
Published 2012 American Cancer Society, Inc.
Additional Information(Show All)
- †We thank the following additional contributors to a companion publication to this article, “Cancer Treatment & Survivorship Facts & Figures 2012-2013”: Rick Alteri, MD; Ronald Barr, MD; Keysha Brooks-Coley, MA; Dana Chase, MD; John Daniel, MA; Stephen Edge, MD; Rachel Freedman, MD; James Gajewski, MD; Patricia Ganz, MD; Phillip Gray, MD; Natalie Hamm, RN, MSPH; Paul Jacobsen, PhD; Joan Kramer, MD; Alex Little, MD; Mark Litwin, MD; Ruth Rechis, PhD; Cheri Richards, MS; Lisa Richardson, MD; and Julia Rowland, PhD.
- ‡DISCLOSURES: The authors report no conflicts of interest.
- §This article is a US Government work and, as such, is in the public domain in the United States of America. doi: 10.3322/caac.21149. Available online at cacancerjournal.com
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Abstract
Although
there has been considerable progress in reducing cancer incidence in
the United States, the number of cancer survivors continues to increase
due to the aging and growth of the population and improvements in
survival rates. As a result, it is increasingly important to understand
the unique medical and psychosocial needs of survivors and be aware of
resources that can assist patients, caregivers, and health care
providers in navigating the various phases of cancer survivorship. To
highlight the challenges and opportunities to serve these survivors, the
American Cancer Society and the National Cancer Institute estimated the
prevalence of cancer survivors on January 1, 2012 and January 1, 2022,
by cancer site. Data from Surveillance, Epidemiology, and End Results
(SEER) registries were used to describe median age and stage at
diagnosis and survival; data from the National Cancer Data Base and the
SEER-Medicare Database were used to describe patterns of cancer
treatment. An estimated 13.7 million Americans with a history of cancer
were alive on January 1, 2012, and by January 1, 2022, that number will
increase to nearly 18 million. The 3 most prevalent cancers among males
are prostate (43%), colorectal (9%), and melanoma of the skin (7%), and
those among females are breast (41%), uterine corpus (8%), and
colorectal (8%). This article summarizes common cancer treatments,
survival rates, and posttreatment concerns and introduces the new
National Cancer Survivorship Resource Center, which has engaged more
than 100 volunteer survivorship experts nationwide to develop tools for
cancer survivors, caregivers, health care professionals, advocates, and
policy makers. CA Cancer J Clin 2012. Published 2012 American Cancer
Society.
Introduction
Cancer
is a major public health problem in the United States and many other
parts of the world. Currently, one in 3 women and one in 2 men in the
United States will develop cancer in his or her lifetime. Increases in
the number of individuals diagnosed with cancer each year, due in large
part to aging and growth of the population, as well as improving
survival rates, have led to an ever-increasing number of cancer
survivors. There are several definitions of cancer survivors; here, we
use the term “cancer survivor” to describe any person who has been
diagnosed with cancer, from the time of diagnosis through the balance of
life. There are at least 3 distinct phases associated with cancer
survival, including the time from diagnosis to the end of initial
treatment, the transition from treatment to extended survival, and
long-term survival.1
The
goal of treatment is to “cure” the cancer, or prolong survival in
patients with advanced disease, while preserving the highest possible
quality of life in both the long and short term. Many survivors, even
among those who are cancer free, must cope with the long-term effects of
treatment, as well as psychological concerns such as fear of
recurrence. Cancer patients and survivors also face a variety of medical
and social concerns dependent on their age, comorbid conditions,
socioeconomic status, and family/support network. Throughout this
article, the terms “cancer patient” and “survivor” are used
interchangeably. It is important to note that not all individuals with a
cancer diagnosis identify with the term “cancer survivor.”
In
this article, we provide statistics on cancer prevalence, common
treatment modalities, and survival and review issues related to cancer
treatment and survivorship.
Materials and Methods
Prevalence Estimates
Cancer
prevalence was projected using the Prevalence, Incidence Approach Model
method, which calculates prevalence from cancer incidence and survival
and all-cause mortality.2
Incidence and survival were modeled by cancer type, patient sex, and
age group using malignant cases diagnosed from 1975 through 2007 from
the 9 oldest registries in the Surveillance, Epidemiology, and End
Results (SEER) program. The most recent year of available data (2008)
was excluded due to anticipated undercounts because of reporting delay.
Survival was assumed to be constant from 2007 through 2022 and was
estimated by fitting a parametric mixture cure survival model to the
SEER data. Mortality data for 1969 through 2008 were obtained from the
National Center for Health Statistics and projected mortality rates for
2009 to 2022 were obtained from the University of California at Berkeley
mortality cohort life tables (available at: demog.berkeley.edu/∼bmd/).
Population projections from 2008 through 2022 were obtained from the US
Census Bureau. For more information about this method, see studies by
Mariotto et al.3, 4
Case Estimates for 2012
The method for estimating the number of new US cancer cases in 2012 is described elsewhere.5
Briefly, the total number of cases in each state was estimated using a
spatiotemporal model based on incidence data from 47 states and the
District of Columbia for the years 1995 through 2008 that met the North
American Association of Central Cancer Registries' high-quality data
standard for incidence, which covers about 95% of the US population. The
numbers of new cases nationally and in each state were then projected 4
years ahead using a temporal projection method.
Staging
A
number of different staging systems are used to classify cancers. The
TNM staging system assesses cancer in 3 ways: the size and extension of
the tumor (T), regional lymph node involvement (N), and the presence of
distant metastases (M). Once the T, N, and M classifications are
determined, a stage of 0, I, II, III, or IV is assigned. The TNM staging
system is commonly used in clinical settings and is used in this
article for the description of treatment patterns. Summary stage, a less
complex staging system, has historically been used by central cancer
registries. Cancers are classified as in situ, local, regional, and
distant, based on the extent of spread. The summary stage is used in
this article to describe population-based patterns of stage at diagnosis
and survival.
Survival
This
article presents relative survival rates to describe cancer survival.
Relative survival adjusts for normal life expectancy by comparing
survival among cancer patients with that of the general population
controlling for age, race, and sex. The 5-year survival statistics
presented herein were originally published in the SEER Cancer Statistics Review, 1975-20086
and are for diagnosis years 2001 to 2007, with all patients followed
through 2008. In addition to 5-year relative survival rates, 1-year,
10-year, and 15-year survival rates are presented for selected cancer
sites. These survival statistics were generated using the National
Cancer Institute (NCI)'s SEER 17 database7 and SEER*Stat software (version 7.0.5).8
One-year survival rates are based on cancer patients diagnosed from
2004 through 2007, 10-year survival rates are based on diagnoses from
1995 to 2007, and 15-year survival rates are based on diagnoses from
1990 to 2007; all patients were followed through 2008. Caution should be
exercised in interpreting increasing trends in survival rates. For
example, increases in cancer screening rates can artificially improve
survival statistics by shifting diagnosis earlier (ie, lead time bias)
and detecting indolent cancers (ie, overdiagnosis).
Treatment
We analyzed cancer treatment data from 2 sources: the National Cancer Data Base (NCDB) and the SEER-Medicare linked database.
National Cancer Data Base
The
NCDB is a hospital-based cancer registry jointly sponsored by the
American Cancer Society (ACS) and the American College of Surgeons, and
includes approximately 70% of all malignant cancers in the United States
from more than 1400 facilities accredited by the American College of
Surgeons' Commission on Cancer (CoC).9
Although chemotherapy use data in the NCDB are less complete than data
on surgery or radiation therapy and information concerning specific
chemotherapeutic agents is not available, the data are sufficiently
complete to permit descriptive studies of cancer treatment patterns by
site and stage. For more information regarding the classification of
anticancer drugs into the categories of chemotherapy, immunotherapy,
hormonal therapy, and targeted therapy, see the SEER-Rx Web site
(available at: seer.cancer.gov/tools/seerrx).
Although
the NCDB is a useful tool for describing cancer treatment at a national
level, it may not be fully representative of all cancer patients
treated in the United States. Data are collected for patients diagnosed
or treated at CoC-accredited facilities, which are more likely to be
located in urban areas and tend to be larger centers compared with
non–CoC-accredited facilities.10
Additionally, cancers that are commonly treated and diagnosed in
nonhospital settings (eg, melanoma, prostate cancer, and
non–muscle-invasive bladder cancer) are less likely to be captured by
the NCDB because it is a hospital-based registry. Although the NCDB is
not population-based, trends in disease severity and treatment of common
cancer sites are similar to those found in studies using SEER and
SEER-Medicare data.11-13 More information on the NCDB can be found at their Web site (facs.org/cancer/ncdb).
SEER-Medicare Database
The SEER-Medicare database is a large, integrated population-based cancer registry and claims data set.14, 15
This database was accessed to supplement data not available in NCDB
such as data regarding the use of specific chemotherapeutic agents. The
SEER registries collect clinical, demographic, and cause-of-death
information for persons with cancer and cover the states of Connecticut,
Hawaii, Iowa, New Mexico, Utah, Kentucky, Louisiana, New Jersey, and
California, as well as the metropolitan areas of Detroit, Atlanta,
Seattle, and rural Georgia, capturing approximately 26% of the US
population. Medicare is the primary health insurer for 97% of the US
population aged 65 years and older. Medicare data include inpatient,
outpatient, physician services, home health, durable medical equipment,
and prescription drug claims files. The linkage of these 2 data sources
is the collaborative effort of the NCI, the SEER registries, and the
Centers for Medicare and Medicaid Services. More information on the
SEER-Medicare database can be found at their Web site (available at: healthservices.cancer.gov/seermedicare).
Selected Findings
Cancer Prevalence
An
estimated 13.7 million Americans with a history of cancer were alive on
January 1, 2012. This estimate does not include carcinoma in situ of
any site except the urinary bladder, and does not include basal cell and
squamous cell skin cancers. The 10 most common cancer sites represented
among survivors are shown in Figure 1.
The 3 most common cancers among male survivors are prostate (43%),
colorectal (9%), and melanoma of the skin (7%). Among female survivors,
the most common cancers are those of the breast (41%), uterine corpus
(8%), and colorectum (8%). The majority of cancer survivors (64%) were
diagnosed 5 or more years ago, and 15% were diagnosed 20 or more years
ago (Table 1). Nearly one-half (45%) of cancer survivors are aged 70 years or older, while only 5% are younger than 40 years (Table 2).
As of January 1, 2022, it is estimated that the population of cancer
survivors will increase to nearly 18 million (8.8 million males and 9.2
million females).
MALE | FEMALE | |||||
---|---|---|---|---|---|---|
YEARS SINCE DIAGNOSIS | NO. | PERCENTAGE | CUMULATIVE PERCENTAGE | NO. | PERCENTAGE | CUMULATIVE PERCENTAGE |
| ||||||
0 to < 5 | 2,608,320 | 40% | 40% | 2,339,950 | 32% | 32% |
5 to < 10 | 1,628,010 | 25% | 65% | 1,595,410 | 22% | 54% |
10 to < 15 | 997,060 | 15% | 80% | 1,135,160 | 16% | 70% |
15 to < 20 | 570,290 | 9% | 89% | 791,880 | 11% | 81% |
20 to < 25 | 305,140 | 5% | 94% | 536,670 | 7% | 88% |
25 to < 30 | 154,470 | 2% | 96% | 343,300 | 5% | 92% |
30+ | 179,010 | 3% | 100% | 499,210 | 7% | 100% |
MALE | FEMALE | |||||
---|---|---|---|---|---|---|
AGE, YEARS | NO. | PERCENTAGE | CUMULATIVE PERCENTAGE | NO. | PERCENTAGE | CUMULATIVE PERCENTAGE |
| ||||||
All ages | 6,442,280 | 7,241,570 | ||||
0-14 | 36,770 | 1% | 1% | 21,740 | < 1% | < 1% |
15-19 | 24,860 | < 1% | 2% | 23,810 | < 1% | 1% |
20-29 | 74,790 | 1% | 3% | 105,110 | 1% | 2% |
30-39 | 134,630 | 2% | 5% | 250,920 | 3% | 5% |
40-49 | 350,350 | 5% | 10% | 647,840 | 9% | 14% |
50-59 | 930,140 | 14% | 24% | 1,365,040 | 19% | 33% |
60-69 | 1,705,730 | 26% | 50% | 1,801,430 | 25% | 58% |
70-79 | 1,858,260 | 29% | 79% | 1,607,630 | 22% | 80% |
80+ | 1,326,740 | 21% | 100% | 1,418,050 | 20% | 100% |
National Cancer Survivorship Resource Center |
The National Cancer Survivorship Resource Center (The Survivorship Center) is a collaboration between the American Cancer Society and the George Washington Cancer Institute, funded by the Centers for Disease Control and Prevention. Its goal is to shape the future of posttreatment cancer survivorship care and to improve the quality of life of cancer survivors. The Survivorship Center staff and more than 100 volunteer survivorship experts nationwide developed the tools listed below for cancer survivors, caregivers, health care professionals (HCPs), and policy and advocacy efforts. |
Tools for Cancer Survivors and Caregivers |
Life After Cancer Treatment Guide. A quick, easy-to-read information guide to help cancer survivors and their caregivers understand the various aspects of the survivorship journey. The guide also includes trusted resources for survivorship information and encourages communication with HCPs. The guide is available online at cancer.org/survivorshipguide. |
Survivorship Information Resource Inventory. An inventory of information resources to assist posttreatment survivors. It is available online at cancer.org/survivorshipresourceinventory. |
Tools for HCPs |
Prescription for Cancer Information. A tool to help HCPs talk to survivors about resources available in their office or clinic, in the community, online, and over the telephone. This tool is available online at cancer.org/survivorshipprescription. |
Moving Beyond Patient Satisfaction: Tips to Measure Program Impact Guide. A brief guide detailing indicators and outcome measures that can be used to monitor the success of survivorship programs, available online at cancer.org/survivorshipprogramevaluation. |
Tools for Advocates and Policy Makers |
The Survivorship Center recognizes the importance of policies that support quality survivorship care. To educate policy makers on these issues, a white paper was created describing the priority areas for improving survivorship care. This paper is available online at cancer.org/survivor shippolicypaper. |
To find out more about the Survivorship Center's activities, visit cancer.org/survivorshipcenter. |
Selected Cancers
Breast (Female)
It
is estimated that there are nearly 3 million women living in the United
States with a history of invasive breast cancer, and an additional
226,870 women will be diagnosed in 2012. The median age at the time of
breast cancer diagnosis is 61 years (Fig. 2).6
About 20% of breast cancers occur among women aged younger than 50
years, while 40% occur among women aged 65 years and older. Overall, 60%
of breast cancers are diagnosed at a localized stage.
Treatment and Survival
Surgical
treatment for breast cancer involves breast-conserving surgery (BCS) or
mastectomy. When BCS is appropriately used for localized or regional
cancers, long-term survival is the same as with mastectomy.16
However, some patients require mastectomy because of large or multiple
tumors and others elect mastectomy because of a reluctance or inability
to undergo radiation therapy after BCS or for other reasons. Depending
on age at diagnosis, 20% to 45% of women who undergo mastectomy elect to
have breast reconstruction, either with an implant, tissue flap, or a
combination of the 2.17-21
Among
women diagnosed with early stage (I or II) breast cancer, 57% undergo
BCS, 36% have mastectomy, 6% undergo no surgical treatment, and about 1%
do not receive any treatment (Fig. 3).
In contrast, among women with late stage (III or IV) breast cancer, 13%
receive BCS, 60% undergo mastectomy, 18% do not have surgery, and 7% do
not receive any treatment. The majority of women with early stage
breast cancer who undergo BCS receive adjuvant treatment; nearly
one-half undergo radiation therapy alone and one-third receive both
radiation therapy and chemotherapy. In contrast, most women diagnosed
with late stage disease undergo chemotherapy in addition to surgery and
other therapies.
The
overall 5-year relative survival rate for female breast cancer patients
has improved from 75.1% between 1975 to 1977 to 90.0% for 2001 through
2007. This increase is due largely to improvements in treatment (ie,
chemotherapy and hormone therapy) and to earlier diagnosis resulting
from the widespread use of mammography.22
The
5-year relative survival rate for women diagnosed with localized breast
cancer is 98.6%; survival declines to 83.8% for regional stage and
23.3% for distant stage. In addition to stage, factors that influence
survival include tumor grade, hormone receptor status, and human
epidermal growth factor receptor 2 (HER2) status.
African
American women are less likely than white women to be diagnosed with
local stage breast cancer (51% vs 61%) and have lower survival rates
than white women within each stage of disease. The reasons for these
differences are complex, but may be explained in large part by a
combination of socioeconomic factors, less access to care among African
American women, and biological differences in cancers.
Common Side Effects of Treatment
Lymphedema
of the arm is a common side effect of breast cancer surgery and
radiation therapy; it has been estimated that 10% to 50% of patients
with breast cancer develop lymphedema.23
The use of sentinel lymph node biopsy, rather than axillary lymph node
dissection, reduces the risk of developing lymphedema. There are a
number of effective therapies for lymphedema. Some evidence suggests
that upper body exercise and physical therapy may reduce the risk and
lessen the severity of this condition.24
Other
long-term local effects of breast cancer surgery and radiation
treatment include numbness or tightness and pulling or stretching in the
chest wall, arms, or shoulders. In addition, women diagnosed and
treated for breast cancer at younger ages may experience impaired
fertility and premature menopause and are at an increased risk of
osteoporosis. Treatment with aromatase inhibitors can also cause
osteoporosis, as well as muscle pain, and joint stiffness and/or pain.
Cancers in Children
Childhood
cancers (from birth to age 14 years) are rare, representing less than
1% of all new cancer diagnoses, but they are the second leading cause of
death in children, exceeded only by accidents. It is estimated that
there are 58,510 survivors of childhood cancer living in the United
States, and an additional 12,060 children will be diagnosed in 2012. The
most common cancers in children are leukemia (34%), brain and other
nervous system malignancies (27%), neuroblastoma (7%), Wilms tumor (5%),
non-Hodgkin lymphoma (NHL) (4%) and Hodgkin lymphoma (HL) (4%),
rhabdomyosarcoma (3%), retinoblastoma (3%), osteosarcoma (3%), and Ewing
sarcoma (1%).6
Treatment and Survival
Childhood
cancers are treated with a combination of therapies (surgery,
radiation, and chemotherapy) chosen based on the type and stage of
cancer. Treatment most commonly occurs in specialized centers and is
coordinated by a team of experts, including pediatric oncologists and
surgeons, pediatric nurses, social workers, and psychologists.
The
overall 5-year relative survival rate for childhood cancer has improved
markedly over the past 3 decades, from 58.1% for cases diagnosed from
1975 to 1977 to 82.5% for diagnoses during 2001 to 2007, due to new and
improved treatments. However, rates vary considerably depending on
cancer type, patient age, and other characteristics. The 5-year survival
rate for retinoblastoma is 97.5%; it is 95.4% for HL, 88.4% for Wilms
tumor, 85.7% for NHL, 83.1% for leukemia, 74.2% for neuroblastoma, 70.8%
for brain and other nervous system tumors, 70.4% for osteosarcoma, and,
68.1% for rhabdomyosarcoma.
Common Concerns of Childhood Cancer Survivors
Children
diagnosed with cancer may experience treatment-related side effects not
only during treatment, but many years after diagnosis as well.
Aggressive treatments used for childhood cancers during the 1970s and
1980s, resulted in a number of late effects, including an increased risk
of second cancers.
Growing evidence
suggests that these treatments, and even some of the newer, less toxic,
therapies, may increase the risk of other serious health conditions in
long-term childhood cancer survivors.25 Late treatment effects can include impairment in the function of specific organs, cognitive impairments, and secondary cancers.
The
most common types of second cancers occurring among childhood cancer
survivors are female breast, brain/central nervous system, bone,
thyroid, soft tissue, melanoma, and acute myeloid leukemia.26
The Children's Oncology Group has developed long-term follow-up
guidelines for the screening and management of late effects in survivors
of childhood cancer. For more information on childhood cancer
management, please see the Children's Oncology Group Web site (available
at: survivorshipguidelines.org).
The Childhood Cancer Survivor Study, which continues to follow more
than 14,000 long-term survivors of childhood cancer, has also provided
valuable information about the late effects of cancer treatment. For
more information, visit the Childhood Cancer Survivor Study Web site
(available at: ccss.stjude.org).
Common Side Effects of Treatment
Cancers
occurring in adolescents (those aged 15-19 years) and young adults
(those aged 20-39 years) are associated with a unique set of issues.
Many types of childhood cancer are rarely diagnosed after age 15 years,
while others, such as Ewing sarcoma and osteosarcoma, most commonly
present during adolescence. Adolescents and young adults (AYAs)
diagnosed with childhood cancers are usually most appropriately treated
at pediatric facilities or by pediatric specialists rather than by
adult-care specialists. Studies have shown that for young adult patients
diagnosed with acute lymphocytic leukemia (ALL), outcomes are improved
on pediatric, as opposed to adult, protocols.27, 28
For AYAs diagnosed with cancers more common among adults, such as
breast and colorectal cancers, treatment by adult-care specialists is
more appropriate.29
Studies
have found that improvements in survival among AYAs have lagged behind
those in children and even behind those for older adult patients30; however, the current 5-year overall relative survival rate for AYAs is the same as that for children.7
Although AYAs and their families have unique stresses and concerns
related to cancer, there is scant information on survivorship concerns
for this group in the literature. Childhood cancer survivors and newly
diagnosed AYA cancer patients often face additional challenges related
to insurance coverage beginning at age 18 years. Medicaid covers cancer
treatment for pediatric cancer patients who meet income criteria, but
the more generous coverage lapses at age 18 or 21 years, depending on
state of residence.
Colon and Rectum
It
is estimated that there are nearly 1.2 million men and women living in
the United States with a previous diagnosis of colorectal cancer, and an
additional 143,460 will be diagnosed in 2012. The median age at
diagnosis of colorectal cancer is 68 years for males and 72 years for
females.6
Use
of recommended colorectal cancer screening tests can both detect cancer
earlier and prevent colorectal cancer by promoting the removal of
precancerous polyps. However, only 59.1% of men and women aged 50 years
and older receive colorectal cancer screening according to guidelines.31 As a result, just 39% of patients are diagnosed at a local stage, when treatment is most successful.6
Treatment and Survival
Treatment for patients with cancers of the colon and rectum varies by tumor location and stage at diagnosis (Figs. 4 and 5).
Surgery to remove the cancer and nearby lymph nodes is the most common
treatment for early stage (stage I and II) colon (94%) and rectal (74%)
cancer. A colostomy is more commonly used for rectal cancer (26%) than
for colon cancer (7%), and is often temporary.9
Chemotherapy
alone, or in combination with radiation therapy, is often given to
patients with late-stage disease (50%-70%) before or after surgery.
Three targeted monoclonal antibody therapies approved by the US Food and
Drug Administration to treat patients with metastatic colorectal cancer
are bevacizumab (used by 24.2% of chemotherapy recipients in the
SEER-Medicare data), cetuximab (used by 3.6% of chemotherapy
recipients), and panitumumab (no data available).15
The
1-year and 5-year relative survival rates for individuals with
colorectal cancer are 83.2% and 64.3%, respectively. Survival continues
to decline to 57.6% at 10 years after diagnosis. When colorectal cancers
are detected at a localized stage, the 5-year relative survival rate is
90.1%. After the cancer has spread regionally to involve adjacent
organs or lymph nodes, the 5-year survival rate drops to 69.2%. When the
disease has spread to distant organs, the 5-year survival rate is
11.7%.
Common Side Effects of Treatment
Most
long-term survivors of colorectal cancer report psychological quality
of life comparable to that of the general population, but a somewhat
lower physical quality of life.32
Bowel dysfunction is particularly common, especially among those
diagnosed with late-stage cancer. Survivors with a stoma are more likely
to suffer limitations in social quality of life, particularly women.32
As many as 40% of patients treated for local and locally advanced
colorectal cancer will have a recurrence; survivors of colorectal cancer
are also at an increased risk of second primary cancers of the colon
and rectum.33, 34
Leukemias and Lymphomas
It
is estimated that there are 298,170 leukemia survivors living in the
United States, and an additional 47,150 individuals will be diagnosed
with leukemia in 2012.
Almost 90% of
leukemia patients are diagnosed at age 20 years and older; AML and
chronic lymphocytic leukemia (CLL) are the most common types of leukemia
occurring in adults. Among children and teens, ALL is most common. The
median age at diagnosis is 13 years for ALL, 72 years for CLL, 67 years
for AML, and 65 years for chronic myeloid leukemia (CML) (Fig. 2).6
There
are 2 basic categories of lymphoma: HL and NHL. NHLs can be further
divided into indolent and aggressive categories, each of which includes
many subtypes that progress and respond differently to treatment.
Prognosis and treatment depend on the stage and type of lymphoma.
Although both HL and NHL occur in children and adults, the majority
(65%) of HLs occur before age 50 years, whereas 83% of NHLs occur in
those aged 50 years and older (Fig. 2).
Treatment and Survival for the Most Common Types of Leukemia and Lymphoma
AML.
Chemotherapy is the standard treatment for AML (Fig. 6).
Some patients may also undergo stem cell transplantation and some
receive radiation therapy (often as part of a conditioning regimen prior
to stem cell transplantation).
About 4%
of AML cases occur in children aged 14 years and younger, for whom the
prognosis is substantially better than for adults. Survival for AML
decreases markedly with age at diagnosis. The 5-year relative survival
rate for children and adolescents (aged birth to 19 years) is 60.4%, but
for patients aged 20 years to 49 years, 50 years to 64 years, and 65
years and older, it declines to 48.0%, 24.2%, and 5.2%, respectively.7
CML.
CML is the most common leukemia diagnosed in adults, though 3% of cases are diagnosed in children.7
In large part due to the discovery and widespread use of BCR-ABL
tyrosine kinase inhibitors, the 5-year survival rate for CML increased
from 31.0% for patients diagnosed from 1990 to 1992 to 55.2% for those
diagnosed from 2001 to 2007.
ALL.
Although
ALL is the most common type of leukemia diagnosed in children,
accounting for 78% of all childhood (aged birth to 14 years) leukemia
cases,6 40% of cases are diagnosed in patients aged 20 years and older.7 Molecular subgroups differ based on age at onset.35 More than 95% of children with ALL attain remission.36, 37
Pediatric patients with ALL (aged birth to 17 years) who survive 5
years or longer have a 5-fold increased risk of a second primary
malignancy compared with the general population, while adult-onset
disease confers no excess risk.33
Survival
rates for patients with ALL have increased significantly over the past 3
decades for patients of all ages except those aged 65 years and older.
However, 5-year relative survival rates remain substantially lower for
adults (33.0% for those aged 20-49 years, 19.5% for those aged 50-64
years, and 7.3% for those aged 65 years and older) compared with
children and adolescents (78.4% for those aged birth to 19 years).7
One
of the most serious potential long-term side effects of ALL therapy in
children is the development of AML, which occurs in about 5% of patients
who receive epipodophyllotoxins (eg, etoposide or teniposide) or
alkylating agents (eg, cyclophosphamide or chlorambucil).38
CLL.
CLL is the most common type of leukemia in adults; 95% of cases are diagnosed in individuals aged 50 years and older (Fig. 2).
Treatment is not likely to cure CLL and is often unnecessary for
patients with uncomplicated early disease for whom active surveillance
is a common treatment approach. It should be noted that the low rates of
chemotherapy shown for CLL in Figure 6
are for first course of treatment only and do not reflect those
patients who receive chemotherapy later in the course of disease. For
patients with more advanced disease, available treatments include
chemotherapy, immunotherapy, radiation therapy, and splenectomy. The
overall 5-year relative survival rate for CLL is 78%; however, there is a
large variation in survival among individual patients, ranging from
several months to a normal life expectancy.
HL.
It
is estimated that there are 188,590 men and women living in the US with
a history of HL, with 9060 new cases expected in 2012. HL can be
diagnosed at any age, but is most common in early adulthood (61% of
cases are diagnosed between ages 15 years-49 years) (Fig. 2).6
There are 2 major types of HL. Classical HL (CHL) is the most common
and is characterized by the presence of Reed-Sternberg cells. Nodular
lymphocyte-predominant HL (NLPHL) is rare, representing only about 3% to
5% of cases, and is a more indolent disease with a generally favorable
prognosis.6, 39
CHL
is usually treated with multiagent chemotherapy (87%), sometimes in
combination with radiation therapy (31% among chemotherapy recipients),
though the use of radiation is declining.9
For patients with NLPHL, radiation therapy alone may be appropriate for
early stage disease. For those with later stage disease, chemotherapy
plus radiation, as well as the monoclonal antibody rituximab, may be
recommended.
The 5-year relative survival
rate for all HL combined has improved from 72.0% for cases diagnosed
from 1975 to 1977 to 86.3% for those diagnosed from 2001 to 2007. The
current 1-year and 10-year survival rates are 91.5% and 79.0%,
respectively.7 The overall 5-year survival rate is 96.0% for NLPHL and 82.1% for CHL.
NHL.
It
is estimated that there are 534,950 males and females living in the
United States with a diagnosis of NHL and 70,130 new cases will be
diagnosed in 2012. The most common types of NHL are diffuse large B-cell
lymphoma, representing 22% of cases diagnosed in the 17 SEER areas
between 2001 and 2007, and follicular lymphoma, representing 12% of
cases. Diffuse large B-cell lymphomas grow quickly and are cured with
treatment in about one-half of all patients. In contrast, follicular
lymphomas tend to grow slowly and often do not require treatment until
the patient becomes symptomatic. Some cases of follicular lymphoma
transform into diffuse B-cell lymphoma.40
The
first course of treatment for all NHL subtypes combined is usually
chemotherapy, either in combination with (11%) or without (56%)
radiation therapy; radiation without chemotherapy (7%) is used less
often (Fig. 7). Approximately 16% of patients receive no initial treatment.
The
5-year relative survival rate for all cases of NHL combined is 67.3%;
by subtype, the 5-year survival rate is 84.2% for follicular lymphoma,
59.1% for diffuse large B-cell lymphoma, and 54.5% for Burkitt lymphoma.
Common Side Effects of Treatment
Children
treated for leukemia and lymphoma can experience a number of
significant late effects. Some children with ALL may receive cranial
radiation therapy, which can cause long-term cognitive deficits. Late
effects in survivors of HL include an increased breast cancer risk in
women who were treated in childhood with radiation to the chest as well
as various heart complications (eg, valvular heart disease and coronary
artery disease).
Lung and Bronchus
It
is estimated that there are 412,230 men and women living in the United
States with a history of lung cancer, and an additional 226,160 cases
will be diagnosed in 2012. The median age at diagnosis for lung cancer
is 70 years for males and 71 years for females.6
The majority of lung cancers (56%) are diagnosed at a distant stage
because early disease is typically asymptomatic; only 15% of cases are
diagnosed at a local stage.6
Results
from the National Lung Screening Trial, a clinical trial designed to
determine the effectiveness of lung cancer screening in high-risk
individuals, showed 20% fewer lung cancer deaths among current and
former heavy smokers who were screened with low-dose computed tomography
compared with standard chest x-ray.41
Because cancer screening tests are associated with both benefits and
harms, the ACS and other organizations are now engaged in a process of
carefully reviewing the evidence to determine the potential benefits and
harms associated with low-dose computed tomography screening. Interim
guidance for the general public and health care professionals can be
found at the ACS Web site (available at: cancer.org/Healthy/FindCancerEarly/index).
Treatment and Survival
Lung
cancer is classified as small cell (14% of cases) or non-small cell
(85% of cases) for the purposes of treatment. Radiation therapy alone
(for limited disease) or combined with chemotherapy (for extensive
disease) is the standard treatment for small cell lung cancer; 70% to
90% of patients with limited disease and 60% to 70% of those with
extensive disease experience at least temporary remission. For patients
with early stage non-small cell lung cancer, the majority (71%) undergo
surgery and approximately 18% also receive chemotherapy or radiation
therapy (Fig. 8).
Patients with advanced stage non-small cell lung cancer are treated
with chemotherapy alone (20%), radiation therapy alone (17%), or a
combination of the 2 (35%). The targeted therapy bevacizumab is used by
16.5% of chemotherapy recipients in the SEER-Medicare database15; erlotinib, cetuximab, and crizotinib may also be used to treat advanced stage disease.
The
1-year relative survival rate for lung cancer increased from 35.7% for
cases diagnosed from 1975 to 1977 to 44.5% for those diagnosed from 2004
to 2007, largely due to improvements in surgical techniques and
chemoradiation. The 5-year survival rate is 52.2% for cases detected
when the disease is still localized, 24.3% for patients with regional
disease, and 3.6% for patients with distant stage disease. The overall
5-year survival rate for small cell lung cancer (6.1%) is lower than
that for non-small cell lung cancer (17.1%).
Common Side Effects of Treatment
Many
lung cancer survivors have impaired lung function, especially if they
have had surgery. Lung cancer survivors who smoke are at an increased
risk of additional smoking-related cancers, especially in the head and
neck and urinary tract, and should be encouraged to quit.33
Survivors may feel stigmatized because of the connection between
smoking and lung cancer, which can be particularly difficult for lung
cancer survivors who never smoked.42
Melanoma
It
is estimated that there are nearly 1 million melanoma survivors living
in the United States, and an additional 76,250 individuals will be
diagnosed in 2012. Melanoma incidence rates have been increasing for at
least 30 years.
More than 3 out of 4
melanomas are diagnosed at a localized stage, when they are highly
curable. The median age at diagnosis for melanoma is 63 years for males
and 56 years for females.6
Although melanoma is rare before age 30 years, it is the second and
third most commonly diagnosed cancer in women and men, respectively, for
those ages 20 years to 29 years.
Treatment and Survival
Among
patients diagnosed with malignant melanoma in SEER registries,
wide-excision surgery is the primary treatment for 31% of patients with
stage I disease, 46% of patients with stage II disease, 53% of patients
with stage III disease, and 9% of patients with stage IV disease. Less
than 3% of all patients with melanoma undergo radiation therapy.
However, almost one-half (45%) of patients with advanced stage disease
who receive either chemotherapy or immunotherapy also receive radiation
therapy.9
The 5-year and 10-year relative survival rates for patients with melanoma are 91.2% and 89.1%, respectively.7
For those with localized melanoma, the 5-year survival rate is 98.2%;
5-year survival rates for individuals with regional and distant stage
disease are 61.7% and 15.2%, respectively.
Common Side Effects of Treatment
Melanoma
survivors are nearly 9 times more likely than the general population to
develop additional melanomas due to genetic risk factors and/or
overexposure to ultraviolet radiation.43
Prostate
It
is estimated that there are nearly 2.8 million men living with a
history of prostate cancer in the United States, and an additional
241,740 cases will be diagnosed in 2012. The median age at diagnosis is
67 years (Fig. 2).6
Most prostate cancer patients in the United States are diagnosed by
prostate-specific antigen screening, although many expert groups,
including the ACS, have concluded that data are insufficient to
recommend the routine use of this test.
Treatment and Survival
Treatment
options vary depending on the stage and grade of the cancer, as well as
patient comorbidity, age, and personal preferences. More than one-half
(57%) of men aged younger than 65 years are treated with radical
prostatectomy (Fig. 9).
Those aged 65 years to 74 years commonly undergo radiation therapy
(42%), although radical prostatectomy (33%) is also often used. Data
show similar survival rates for patients with early stage disease who
are treated with either of these methods. Active surveillance rather
than immediate treatment is a reasonable and commonly recommended
approach, especially for older men and those with less aggressive tumors
and/or more serious comorbid conditions.44-46
However, according to SEER data, the use of active surveillance
declined from 44% in 1994 to 34% in 2008. Androgen deprivation therapy,
chemotherapy, bone-directed therapy (such as zoledronic acid or
denosumab), radiation therapy, or a combination of these treatments is
used to treat more advanced disease.
More
than 90% of all prostate cancers are discovered in the local or
regional stages, for which the 5-year relative survival rate approaches
100%. Over the past 25 years, the 5-year relative survival rate for all
stages combined has increased from 68.3% to 99.9%. The 10-year and
15-year relative survival rates are 97.8% and 91.4%, respectively.
Common Side Effects of Treatment
Many
prostate cancer survivors who have been treated with surgery or
radiation therapy experience incontinence, erectile dysfunction, and
bowel complications. Patients receiving hormonal treatment may
experience loss of libido; menopausal-like symptoms including hot
flashes, night sweats, and irritability (which are often short term and
treatable); and osteoporosis. In the long term, hormone therapy also
increases the risk of diabetes, cardiovascular disease, and obesity.47
Testis
It
is estimated that there are 230,910 survivors of testicular cancer in
the United States, and an additional 8590 men will be diagnosed in 2012.
Testicular germ cell tumors (TGCTs) account for approximately 95% of
all testicular cancers.48
There are 2 main types of TGCTs: seminomas and nonseminomas.
Nonseminomas generally occur in younger men (aged in their late teens to
early 40s), and tend to be more aggressive. Seminomas are slow-growing
and are generally diagnosed in men aged in their late 30s to early 50s.
Most testicular cancers are detected early; 70% of patients are
diagnosed at a localized stage.6
Treatment and Survival
The
treatment of almost all TGCTs begins with orchiectomy. After
orchiectomy, early stage seminomas are often treated with radiation
(45%), whereas late-stage seminomas are generally treated with
chemotherapy (65%) (Fig. 10).
Men with nonseminomas are often treated with chemotherapy in addition
to orchiectomy, especially at later stages of disease (Fig. 11).
Among patients with early stage nonseminomas, approximately 21% undergo
retroperitoneal lymph node dissection, which is recommended to reduce
the likelihood of recurrence.
For
all testicular cancers combined, the 5-year relative survival rates are
99.0%, 96.2%, and 72.0% for tumors diagnosed at a localized, regional,
or distant stage, respectively.
Common Side Effects of Treatment
Survivors
of testicular cancer are often concerned about sexual and reproductive
impairments after treatment. Although most men who have one healthy
testicle produce sufficient male hormones and sperm to continue sexual
relations and father children, sperm banking is recommended prior to
treatment.
Thyroid
It
is estimated that there are 558,260 people living with thyroid cancer
in the United States, and an additional 56,460 will be diagnosed in
2012. The incidence rate of thyroid cancer has been increasing sharply
since the mid-1990s, and it is the fastest-increasing cancer in both men
and women. Some studies suggest that the rise is due to the increased
detection of small tumors through ultrasound and confirmation via
fine-needle aspiration,49, 50 while others argue that it is in part real, and involves both small and large tumors.51-53
Thyroid cancer commonly occurs at a younger age than most other adult
cancers; the median age at diagnosis is 54 years for males and 48 years
for females.6 Localized stage disease is diagnosed in 58% of male patients and 71% of female patients.
Treatment and Survival
Most
thyroid cancers are either papillary or follicular carcinomas, both of
which are slow-growing and highly curable. The 5% of thyroid cancers
that are medullary or anaplastic are more difficult to treat because
they grow more quickly and have often metastasized by the time of
diagnosis. The first choice of treatment in nearly all cases is surgery,
with most patients receiving total (84%) or partial (15%)
thyroidectomy.9
Approximately 56% of surgically treated patients with
well-differentiated thyroid cancer receive radioactive iodine after
surgery to destroy any remaining thyroid tissue.54
Thyroid hormone therapy is given to inhibit pituitary production of
thyroid-stimulating hormone, thereby decreasing the likelihood of
recurrence.
The 5-year relative survival
rate for all patients with thyroid cancer is 97.3%. However, survival
varies by stage and patient age at diagnosis. The 5-year survival rate
is 99.8%, 96.8%, and 55.4% for localized, regional, and distant stage
disease, respectively. For all stages combined, survival declines with
age; rates are 99.5% for patients aged 45 years and younger and 82.2%
for those aged 75 years and older.
Common Side Effects of Treatment
Patients
receiving a thyroidectomy require thyroid hormone replacement
(levothyroxine) and regular follow-up to achieve proper hormone blood
levels.
Urinary Bladder
It
is estimated that there are 585,390 urinary bladder cancer survivors
living in the United States, and an additional 73,510 cases will be
diagnosed in 2012. One-half of all patients with bladder cancer are
diagnosed with carcinoma in situ. The median age at diagnosis is 73
years for males and 74 years for females.6
Treatment and Survival
Treatment
of urinary bladder cancer varies by stage and patient age. For
non–muscle-invasive cancers, most patients are diagnosed and treated
with transurethral resection of the bladder tumor, which may be followed
by chemotherapy (17%) or intravesical biological therapy with bacillus
Calmette-Guerin solution (29%).9
(The NCDB does not distinguish between systemic and intravesical
chemotherapy, but based on treatment guidelines, it is likely that
virtually all of the chemotherapy noted represents intravesical
administration.)
Among patients with muscle-invasive disease, 4% undergo partial and 41% undergo total cystectomy (Fig. 12).
Approximately 27% of patients received a combination of chemotherapy
and high-dose radiation therapy without surgery. In appropriately
selected patients, this bladder-sparing approach is as effective as
cystectomy at preventing recurrence.55
For advanced cancers that have not spread to other organs, patients may
be offered chemotherapy alone (26%) or in combination with radiation
therapy (11%) in an effort to shrink the tumor and permit cystectomy.9
For
all disease stages combined, the 5-year relative survival rate is
78.1%. Survival declines to 71.4% at 10 years and 65.4% at 15 years
after diagnosis. When in situ urinary bladder cancer is diagnosed, the
5-year survival rate is 96.6%. Patients with invasive tumors diagnosed
at a localized stage have a 5-year survival rate of 70.7%; approximately
35% of cancers are detected at this early stage. For those with
regional and distant disease, the 5-year survival rate is 34.6% and
5.4%, respectively.
Common Side Effects of Treatment
The high rate of bladder cancer recurrence (range, 50%-90%) necessities active bladder cancer surveillance among survivors.56, 57
Patients undergoing cystectomy require urinary diversion with either
the construction of a neobladder with urethral anastomosis (20%) or a
urostomy (80%).58
While urostomy patients may experience urinary leakage, decreased
sexual function, and psychosocial issues related to body image,
neobladder patients report significantly lower urinary function scores
than urostomy patients.59
Uterine Corpus
There
are an estimated 606,910 women living in the United States with a
previous diagnosis of cancer of the uterus and corpus, NOS (uterus) and
an additional 47,130 cases will be diagnosed in 2012. Uterine cancer is
the second most prevalent cancer among women, following breast cancer.
More than 90% of these cancers develop in the endometrium. Most cancers
of the uterine corpus (68%) are diagnosed at an early stage, usually
because of postmenopausal bleeding. The median age at diagnosis for
cancer of the uterine corpus is 61 years (Fig. 2).6
Treatment and Survival
Cancers
of the uterine corpus are usually treated with surgery, radiation
therapy, hormone therapy, and/or chemotherapy, depending on the stage of
disease (Fig. 13).
Surgery alone, consisting of hysterectomy (often along with bilateral
salpingo-oopherectomy), is used to treat 73% of patients with early
stage disease. About 22% of all patients have higher risk early stage
disease and receive radiation therapy, either alone or in combination
with chemotherapy, in addition to surgery.9 The majority (67%) of women with advanced disease receive surgery followed by radiation and/or chemotherapy.
The
1-year, 5-year, and 10-year relative survival rates for cancer of the
uterine corpus are 92.0%, 81.8%, and 79.5%, respectively. The 5-year
survival rate is 95.8% for localized disease, 67.0% for regional
disease, and 15.9% distant stage disease.
Common Side Effects of Treatment
Any
hysterectomy causes infertility. Bilateral oophorectomy will cause
menopause in premenopausal women, which can lead to symptoms such as hot
flashes, night sweats, and vaginal dryness. Sexual problems are
commonly reported among uterine cancer survivors. Pelvic lymphadenectomy
can lead to lymphedema of the lower extremities, particularly for women
who receive radiation therapy.
Common Effects of Cancer and Its Treatment
The
management of symptoms related to cancer and toxicities from its
treatment are an important part of cancer care, affecting the completion
of treatment and both short-term and long-term quality of life and
physical and psychological functioning. The vast majority of cancer
patients experience one or more symptoms or side effects during active
treatment,60 with the most commonly reported symptoms being pain, fatigue, and emotional distress.61 Late effects may surface months or even years after treatment has ended.
Bone Density
Many cancer therapies cause a reduction in bone density.62
Osteopenia and osteoporosis are common side effects in breast cancer
patients with chemotherapy-induced ovarian failure and those treated
with aromatase inhibitors.63
Osteoporosis increases the risk of fractures, which are associated with
a reduced quality of life, particularly among older survivors.64
A prospective study of more than 5000 breast cancer survivors found a
15% increased risk of fractures within 5 years of diagnosis compared
with women with no history of cancer.52
Prostate cancer patients who are treated with bilateral orchiectomy or
androgen ablation therapy experience significant bone loss as early as 1
year posttreatment.65-68
A large study of patients with prostate cancer surviving at least 5
years after diagnosis found that 19.4% of men treated with androgen
deprivation therapy experienced a fracture, compared with 12.6% of men
who did not receive this treatment.69
The skeleton is also one of the most common sites of cancer metastasis.
Among those with advanced disease, 73% of breast cancer patients and
68% of prostate cancer patients develop bone metastases.62
Cardiotoxicity
Cancer treatment can cause a wide range of cardiovascular diseases.70
A number of cytoxic drugs, particularly anthracyclines (eg,
doxorubicin) but also cyclophosphamide, cisplatin, fluorouracil, and
taxanes, can result in cardiomyopathy, ischemia, and dysrhythmias.71 Chronic anthracycline cardiomyopathy may occur years after the completion of treatment.72 When trastuzumab is combined with anthracyclines, the risk of cardiac toxicity appears to increase.73-75
Cardiovascular toxicity from radiotherapy can present in a number of
ways, including as accelerated atherosclerosis of coronary arteries in
the irradiated areas, dysrhythmia, and valvular disease.76-78
A large, long-term study of excess cardiovascular mortality in
survivors of childhood cancer reported a 4-fold increased risk for
chemotherapy recipients and a 5-fold increased risk for patients treated
with radiotherapy, with a linear dose-response observed for radiation
to the heart.79
Cognitive Deficits
Cognitive
deficits from cancer treatment, often referred to as “chemo brain,” may
include problems with attention, concentration, memory, and mental
processing speed. Although only a subgroup of survivors suffer long-term
cognitive dysfunction, these deficits can be debilitating.80, 81 Long-term survivors of breast, lung, and ovarian cancers and lymphoma may have cognitive82-87 and neurological88
complications caused by systemic chemotherapy. The study of brain
dysfunction in these patients is complicated by chemotherapy-related
fatigue, depression, and anxiety, which can also contribute to poor
cognitive performance.89
The risk of cognitive impairment from chemotherapy increases with
advanced age, lower pretreatment intelligence quotient, and the
apolipoprotein E genotype, which is associated with Alzheimer disease.82
Distress
Cancer-related
distress has been defined as a multifactorial, unpleasant emotional
experience of a psychosocial nature that may interfere with the ability
to cope effectively with cancer and its treatment.90
Distress in cancer patients may be difficult to identify because the
signs often overlap with the symptoms of disease and treatment (eg,
fatigue, changes in appetite, and sleep disruptions). Almost all cancer
patients experience some level of distress, ranging from mild, which may
be addressed by discussions with the treatment team, to more severe,
which should be referred to appropriate supportive services (mental
health, social work, and counseling). A recent meta-analysis found that
30% to 40% of cancer patients had diagnosable mood disorders.91
The early detection and treatment of distress can improve treatment
adherence and patient-provider communication and decrease the risk of
severe depression or anxiety.90
Fatigue
Fatigue
is the most common side effect of active cancer treatment, reported in
28% to 90% of cancer patients depending upon the study and 80% to 90% of
those receiving chemotherapy or radiation.92
Compared with fatigue experienced by healthy individuals,
cancer-related fatigue is more severe, more distressing, and less likely
to be relieved with rest. For many patients, chronic fatigue persists
long after treatment has ended. Studies have found that cancer-related
fatigue is commonly associated with sleep disturbance, emotional
distress, and pain.93
Cancer patients may experience fatigue due to anemia, which can be
treated with a variety of medications or blood transfusion. However,
cancer-related fatigue is not fully explained by anemia.94 Causes of cancer-related fatigue are multifactorial,95, 96 and may include depression,97, 98 chronic inflammatory processes with elevated cytokines,99-101 and alterations in muscular energy systems activity.95
Prevalence estimates for cancer-related fatigue among survivors vary
for a number of reasons, including case-mix, lack of a consensus
definition of fatigue, and the use of different assessment tools.102
However, using specific diagnostic criteria established for a clinical
syndrome of cancer-related fatigue, at least 3 studies have suggested
that persistent fatigue is present in 17% to 26% of cancer survivors.94, 103, 104 HL survivors,101, 105 breast cancer survivors treated with adjuvant chemotherapy,99, 106-108 ovarian cancer survivors,109 and bone marrow transplant recipients101, 110 appear to be particularly susceptible. A variety of interventions are recommended for cancer patients experiencing fatigue.93 Meta-analyses show that exercise, especially moderate-intensity resistance exercise, reduces cancer-related fatigue,111 and provide preliminary evidence of the efficacy of psychological interventions112 or psychostimulants.113
Fear of Cancer Recurrence
Fear
of cancer recurrence is among the chief concerns of posttreatment
cancer survivors and may persist long after treatment ends, even among
survivors who are considered to be cancer free or in remission.114-118
For example, data from the ACS Studies of Cancer Survivors indicate
that nearly 60% of 1-year cancer survivors reported moderate to severe
concerns about disease recurrence.119
Fear of recurrence is elevated among survivors and their caregivers who
find less meaning in the cancer experience and who experience more
concomitant family stressors.120
Infertility
Infertility can result from surgery, radiation therapy, or chemotherapy.121
Alkylating agent-based chemotherapy has a highly toxic effect on the
ovaries that increases with dose and duration. Outcomes in premenopausal
women include preservation of menses, temporary amenorrhea, or
early-onset menopause. Risk of ovarian failure is highest among women
closest to natural menopause, who have smaller follicular reserves.122 Uterine radiation is associated with infertility, miscarriage, preterm labor, and low-birthweight infants.123
Male infertility from cancer surgery or radiation therapy can result
from anatomic changes, hormonal imbalances, or lower production and
quality of sperm.124, 125
Pain
A
recent meta-analysis estimated the prevalence of pain to be 59% among
patients in active treatment, 33% among survivors after treatment, and
64% among those with advanced/metastatic/terminal disease.126 Cancer-related pain reduces quality of life and is associated with depression and poor functioning.127
Although studies suggest that pain control can be achieved for 80% of
cancer patients experiencing pain, it is frequently underassessed,
underreported, and undertreated.126
Both surgery and radiation therapy can cause nerve damage, resulting in
chronic pain. Chemotherapy drugs, especially vincristine and the
taxanes, can damage sensory nerve cells, causing peripheral neuropathy.128
The extent of damage is dose-dependent and may take months or years to
resolve. Clinical practice guidelines from both the World Health
Organization and the National Comprehensive Cancer Network recommend
pain assessment throughout the course of treatment and continuing care.129, 130
Pulmonary Dysfunction
Sexual Dysfunction
Although sexual dysfunction is typically associated with males treated for prostate cancer,133, 134 a large percentage of female survivors of gynecologic and breast cancers also experience sexual dysfunction.135, 136 After the completion of treatment, 20% to 30% of breast cancer survivors137 and nearly 80% of prostate cancer survivors138
report sexual difficulties. In female survivors, painful sex is the
most prevalent symptom, while the most common symptom for men is
erectile dysfunction. For both sexes, a diminished interest in sex is
frequently reported and is often persistent.139
Factors causing or contributing to sexual dysfunction include physical
changes related to cancer treatment (eg, damage from radiation
treatments, nerve damage from prostatectomy), hormonal changes (eg,
androgen-suppressing treatments for prostate cancer or ovarian failure),
negative body image, and cancer-related fatigue.
Palliative Care
Palliative
care plays an important role in quality cancer care throughout active
treatment and survivorship. The goal of palliative care is to provide
comprehensive relief from disease- and treatment-related symptoms in
order to achieve the highest possible quality of life. Palliative care
can be administered along with curative treatment, and offers patients
and families more choice to ensure that treatment and symptom control
are aligned with individual goals and preferences. Engaging all members
of the health care team reduces communication barriers to optimal
symptom management. Palliative care has been consistently shown to
improve quality of life by addressing the harmful effects of pain, other
physical symptoms, and emotional distress. It can also function to
reduce the family caregiver burden.140
In
response to the increasing number and needs of Americans living with
serious, complex, and chronic illnesses like cancer, the number of
palliative care teams in hospitals has more than doubled within the past
5 years.141
Currently, there are about 1500 hospitals providing palliative care
services nationwide; nevertheless, millions of Americans still do not
have access to palliative care services, with considerable variation in
availability from state to state.141, 142
The Recovery Phase
Regular
medical care following primary treatment is particularly important for
cancer survivors because of the potential persistent and delayed effects
of treatment, as well as the risk of recurrence and additional primary
malignancies. In 2006, the Institute of Medicine (IOM) Committee on
Cancer Survivorship published a report highlighting the need for a
strategy to improve the coordination of ongoing care for survivors.34
A follow-up report recommended that patients and their primary care
providers be given a treatment summary and comprehensive survivorship
care plan developed by one or more members of the oncology team. The
treatment summary, which provides a foundation for the plan, contains
the details of diagnosis, treatment, and complications. The survivorship
care plan may include a schedule of follow-up visits, symptoms of which
to be aware, potential long-term treatment effects, health behaviors to
enhance recovery, and community resources.143, 144
Unfortunately,
many survivors do not receive this information. A recent study found
that less than one-half (43%) of all NCI-designated cancer centers
provide survivorship care plans to their breast and colorectal cancer
patients; of those that do, none include all of the IOM-recommended
components.145
There are numerous obstacles to the implementation of survivorship care
plans, including institutional and provider commitment. The IOM
recommends that the document be written by the primary coordinator of
treatment and be reimbursed by third-party payers.34
The implementation of survivorship care plans could be facilitated by
the development of consensus guidelines for survivor care to provide
content for the plans and the use of electronic systems to reduce the
time required of clinicians to individually tailor the plans.146
Long-Term Survivorship
Long-term
survivorship, the last phase of the cancer continuum, can be both
stressful and hopeful. Survivors are relieved to have completed
treatment, but may need to make physical, emotional, social, and
spiritual adjustments to find a “new normal.” Please refer to Table 3 at the end of this article for information about a new resource established to improve the quality of life of cancer survivors.
Quality of Life
Quality
of life is a broad multidimensional concept that considers a person's
physical, emotional, social, and spiritual well-being.147
Physical well-being is the degree to which symptoms and side effects
such as pain, fatigue, and poor sleep quality affect the ability to
function. Emotional, or psychological, well-being refers to the ability
to maintain control over anxiety, depression, fear of cancer recurrence,
memory loss, and concentration difficulties. Social well-being
primarily addresses relationships with family and friends, including
intimacy and sexuality. Employment, insurance, and financial concerns
also affect social well-being. Finally, spiritual well-being is derived
from drawing meaning from the cancer experience, either within the
context of religion or through maintaining hope and resilience in the
face of uncertain future health.
The
majority of long-term, disease-free cancer survivors (5 years or more)
report a quality of life comparable to those with no history of cancer.148
However, more invasive and aggressive treatment regimens tend to be
associated with poorer functioning in the long term. Certain groups
report greater difficulty regaining quality of life, including women;
nonwhites; and those who are diagnosed at a younger age, have other
chronic health conditions, have lower socioeconomic status, or are
unemployed.149-151
Numerous
studies have found disparities in physical well-being among cancer
survivors. For example, one study of breast cancer survivors found that
African American race and lower socioeconomic status were associated
with poorer physical functioning.152
Age is also an important predictor of quality of life; survivors
diagnosed at a younger age tend to have poorer emotional functioning,
whereas an older age at diagnosis is often associated with poorer
physical functioning.153, 154
Some survivors of childhood cancers have functional or cognitive
impairments that impede their ability to complete their education and
find employment, which in turn impacts psychological well-being and
overall quality of life.155
Although
the negative effects of a cancer diagnosis are well-documented, there
has been growing recognition that the cancer experience may result in a
wide range of positive outcomes. Indeed, many survivors report a greater
appreciation for life, improved relationships with family and friends,
an enhanced sense of meaning and purpose, and an increased ability to
cope with stress and other challenges in life as a result of the cancer
experience.156
Regaining and Improving Health Through Health Behaviors
Health
behaviors that reduce cancer risk are particularly relevant for
survivors. For example, posttreatment physical activity has been
associated with increased recurrence-free and overall survival, whereas
overweight and obesity have been consistently associated with an
increased risk of recurrence and poorer survival for many cancers.157-160 Continued smoking after treatment also increases the risk of recurrence and of smoking-related second cancers.161, 162
In addition to improving cancer outcomes, healthy behaviors may also benefit survivor functioning and quality of life.163
Clinical trials have demonstrated that exercise can improve heart and
lung function and reduce cancer-related fatigue among survivors.164, 165
The growing evidence that primary preventive health behaviors are
beneficial to survivors led the ACS to develop a guide for physical
activity and nutrition during and after cancer treatment, which was
updated in 2012.166
Physical Activity
Physical
activity can hasten recovery from the immediate side effects of
treatment, prevent long-term effects, and may reduce the risk of
recurrence and increase survival.167
In observational studies among breast cancer survivors, moderate
physical activity has been associated with a reduced risk of death from
all causes (24%-67%) and breast cancer (50%-53%).168 Similar benefits have been observed among colon cancer survivors.169
Intervention studies have shown that exercise can improve fatigue,
anxiety, depression, self-esteem, happiness, and quality of life in
cancer survivors.164
Exercise
for cancer survivors should be individualized and tailored according to
the disease site and stage and the survivor's capabilities. Barriers to
engaging in physical activity may be symptomatic, physical,
psychosocial, or financial.169
Other barriers include a lack of awareness of exercise programs,
unfavorable community environments, and work and family obligations.
Nutrition and Maintaining a Healthy Body Weight
Weight
management is important for cancer survivors. During treatment, though
many patients become underweight due to treatment-related side effects,
some patients gain weight.170
Numerous studies have shown that obesity and weight gain in breast
cancer survivors is associated with increased risk of recurrence and
decreased survival; the evidence is less clear for patients with
colorectal and other cancers.171
A
diet that is plentiful in fruit, vegetables, and whole grains but
contains limited amounts of fat, red and processed meat, and simple
sugars may reduce both the risk of developing second cancers and the
risk of chronic diseases.172
Alcohol consumption is associated with an increased risk of cancers of
the mouth, pharynx, larynx, esophagus, liver, colorectum, and breast.171
Smoking Cessation
Smoking
increases the risk of more than 15 different types of cancer and
accounts for at least 30% of all cancer deaths. Smoking also interferes
with some common cancer treatments. Still, a substantial number of
cancer survivors continue to smoke after their diagnosis.173
According to data from the National Health Interview Survey
(2000-2008), 40% of cancer survivors aged 18 years to 44 years are
current smokers, compared with 24% of the general population.174 Studies have shown that smoking cessation efforts are most successful when they are initiated soon after diagnosis.175
Sun Exposure
Cancer
survivors, particularly those diagnosed with skin cancers, should be
encouraged to adopt skin care behaviors to decrease their risk of
developing skin cancer, including wearing sunscreen and protective
clothing and avoiding sunbathing and artificial tanning.
Caregivers
As
hospital space becomes limited to acute care and cancer treatments are
delivered more frequently in outpatient care settings, tremendous
responsibility increasingly rests with caregivers. One study found that
even 2 years after the cancer diagnosis, caregivers were still spending
an average of 8 hours a day providing care.176
Over time, caregivers may become increasingly vulnerable to
psychological distress, depression, and anxiety, which can be
exacerbated by feelings of social isolation.177 How the caregiver copes with these feelings can play a crucial role in their well-being.178
Social support can help buffer the negative consequences of caregiver
stress and serve to maintain, protect, or improve health. Caregivers
fare better when they participate in social support programs aimed at
teaching effective coping skills.
A cancer
diagnosis can become a “teachable moment” for caregivers as well as
survivors, wherein the illness experience becomes a catalyst for
behavior changes and sustainable lifestyle benefits.179
Increasing evidence has shown that caregivers may also be motivated to
make positive changes to improve their health after a loved one's cancer
diagnosis.180
It is within the “teachable moment” that health behavior interventions
can become ingrained habits and have the greatest potential for
long-term adoption by both survivors and caregivers.
Anxiety about the future and fear of cancer recurrence are lingering issues for caregivers.120
A higher level of fear of recurrence is experienced by caregivers of
survivors diagnosed at a more advanced stage of disease or with a more
aggressive cancer.181 Caregivers can be apprehensive as they reintegrate into life after the patient completes treatment.182 To ease this transition, caregivers may benefit from coping strategies, such as stress management or relaxation techniques.
Across
the cancer trajectory, caregivers often experience persistent levels of
psychological distress that are equal to or greater than those of the
survivor.183
Numerous studies have shown that female caregivers experience more
care-related distress and have a higher risk of poor physical and
emotional health than their male counterparts.184-186
Although
cancer caregiving can be physically and emotionally demanding, it can
also be a meaningful and satisfying experience. The phenomenon of
finding good from difficult life experiences is known as benefit-finding
or posttraumatic growth. A cancer diagnosis can serve as a catalyst to
reprioritize life, restore personal relationships, adopt a more positive
self-view, and become more empathetic toward others. Recent studies
show that both survivors and their caregivers often find benefit in the
challenges associated with cancer.187, 188
Better adjustment and overall quality of life have been attributed to
such positive growth. The cancer survivor's circle of family members and
friends become cosurvivors in the cancer journey. Ensuring that
caregivers are healthy, both emotionally and physically, is imperative
for optimal survivorship care.
Table 3
provides information regarding the new National Cancer Survivorship
Resource Center, which has engaged more than 100 volunteer survivorship
experts nationwide to develop tools for cancer survivors, caregivers,
health care professionals, advocates, and policy makers.
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