Seminars in Oncology Nursing 35 (2019) 192 201

Contents lists available at ScienceDirect

Seminars in Oncology Nursing

journal homepage: https://www.journals.elsevier.com/seminars-in-oncology-nursing

Caring for Survivors of Gynecologic Cancer: Assessment and Management

of Long-term and Late Effects
Grace Campbell, PhD, MSW, RN, CRRNa, Teresa H. Thomas, PhD, RNa, Lauren Hand, MDb,
Young Ji Lee, PhD, RNa, Sarah E. Taylor, MDb, Heidi S. Donovan, PhD, RNa,b,*
a
University of Pittsburgh School of Nursing, Pittsburgh, PA
b
Division of Gynecologic Oncology, Department of Obstetrics and Gynecology, Magee-Womens Hospital University of Pittsburgh Medical Center, Pittsburgh, PA

A R T I C L E I N F O A B S T R A C T

Keywords: Objective: To define important aspects of survivorship care for the more than 1.2 million survivors of gyneco-
gynecologic cancer logic cancer currently living in the US.
survivorship Data Sources: Research articles, reviews, position statements and white papers, and evidence-based
symptoms guidelines.
late effects
Conclusion: Survivorship care includes a coordinated plan of care, ongoing surveillance, health promotion
post-treatment surveillance
support, and management of long-term and late effects of treatment.
Implications for Nursing Practice: Nurses need to be aware of the current guidelines for post-treatment sur-
veillance and health promotion recommendations for survivors of gynecologic cancers. Early identification
of long-term and late effects of treatment followed by coordinated medical intervention and self-manage-
ment education are essential to improve quality of life.
© 2019 Elsevier Inc. All rights reserved.

A cancer survivor is any person with a history of cancer “from the existing survivorship and clinical practice guidelines with the unique
time of its discovery and for the balance of life".1 Although the overall experiences and needs of women with GYN cancers to summarize
cancer incidence rate is declining, the number of cancer survivors is current surveillance and health-promotion recommendations and to
expanding dramatically. Currently, it is estimated that there are more guide nurses in the assessment, prevention, and management of
than 15.5 million cancer survivors in the United States, and that num- long-term and late effects.
ber is expected to grow to over 20 million by 2026 as a result of an
overall increase in life expectancy, improved early detection, and
A Brief History of Cancer “Survivorship” and Survivorship Care
increasingly efficacious treatment methods.2,3 In the European Union,
there are at least 9.17 million survivors and this number is similarly
In the US, awareness that cancer survivors have unique needs
expected to increase. Unfortunately, the number of survivors globally
extending far beyond acute treatment began in the 1980s with the
is impossible to determine because only one in five middle- and low-
publication of Seasons of Survival 5 and the subsequent formation of
resource countries have the necessary data collection infrastructure
the National Coalition on Cancer Survivorship. In 1986, the National
to compile survivorship statistics.
Coalition on Cancer Survivorship defined survivorship as “living with,
An estimated 52% of the population of cancer survivors in the US is
through, and beyond a cancer diagnosis” and subsequently developed
female, and gynecologic (GYN) cancer survivors represent the second
the Cancer Survivor’s Bill of Rights (http://www.healtharticles.org/
largest group (16%) of female cancer survivors.4 The current number
cancer_bill_of_rights_070904.html) to highlight barriers to optimal
of survivors of uterine corpus (757,190), uterine cervix (282,780), and
health and wellness among survivors. Important rights included
ovarian cancers (235,200) are expected to grow to over 1.5 million
access to lifelong medical care for cancer and for long-term and late
total GYN cancer survivors in 2026. As the number of long-term sur-
effects of cancer treatment; freedom from stigma related to their can-
vivors increases, so too has the need for nurses to better understand
cer or their care choices; equal opportunities to hold jobs related to
and manage the long-term and late effects of treatment for GYN can-
their experience, training, and skills; and access to affordable health
cers. The purpose of this article is to integrate recommendations from
insurance coverage that permits ongoing access to high-quality care.
Twenty years later, The Institute of Medicine’s (now the National
* Corresponding author: Heidi S. Donovan, PhD, RN, Professor and Vice Chair for
Research, Department of Health and Community Systems, University of Pittsburgh
Academies of Science, Engineering, and Medicine) landmark report
School of Nursing, 415 Victoria Bldg., 3500 Victoria St., Pittsburgh, PA 15261. on the state of cancer survivorship in the US, From Cancer Patient to
E-mail address: donovanh@pitt.edu (H.S. Donovan). Cancer Survivor: Lost in Transition,6 was published. Similar efforts in

https://doi.org/10.1016/j.soncn.2019.02.006
0749-2081/© 2019 Elsevier Inc. All rights reserved.
 G. Campbell et al. / Seminars in Oncology Nursing 35 (2019) 192 201
the UK culminated in the Living With and Beyond Cancer UK National
Cancer Survivorship Initiative.7 With these reports, survivorship was
recognized as a distinct phase of the cancer care continuum. And, in
fact, these earlier reports tended to focus more on the common ele-
ments of cancer survivorship rather than on the distinct needs of sur-
vivors of different cancer types.
The overarching goal of these reports was to redefine survivorship
care to optimize survivors’ health and well-being after active treat-
ment, and to anticipate and manage the long-term and late effects of
treatment. The key aspects of survivorship care that emerged from
these reports addressed the fragmentation in care faced by survivors
and focused on planning and communication between oncologists,
primary care providers, and patients in the following areas: (1) pre-
vention of new and recurrent cancers with a focus on health promo-
tion and wellness; (2) surveillance for recurrence and screening for
second cancers; (3) assessment and early intervention for long-term
and late effects of cancer and treatment; (4) coordination of care that
includes an informed and empowered survivor; and (5) implementa-
tion of personalized survivorship care plans (SCPs) based on assess-
ment of individual risks, needs, and preferences. Explicit in the UK is
the approach that survivorship care would emphasize a stepped
methodology where, based on needs stratification, interventions
would range from self-care with support and open access, to shared
care, to complex care management by a multidisciplinary team.2
Early work in survivorship care focused on defining the key compo-
nents of an SCP (see Table 1) that would set clear expectations for the
long-term coordination of care for cancer survivors.8,9 This was rec-
ognized as a practical and necessary, but insufficient, first step in
improving survivorship care.
Despite the growing focus on survivorship care, evidence suggests
that survivors’ health, quality of life, employment, and financial needs
are not yet being fully met. Nearly 60% of all survivors have some type
of functional limitation (eg, inability to walk 1=4 mile or stand or sit for
2 hours).6,10 Depression, anxiety, post-traumatic stress disorder
(PTSD) are prevalent among survivors. For example, the prevalence of
depression after a diagnosis of cervical cancer is estimated to be
between 33% and 52%.11 Among ovarian cancer survivors, nearly 25%
report depression and the rate of anxiety is close to 40%.12 Physical
and psychological sequelae have been linked to a wide range of con-
sequences, including poor social functioning, high rates of disability,
increased symptom burden (especially around sleep problems,
fatigue, and pain), poor illness monitoring and management, and
poor health promotion behaviors.6 Financial sequelae of cancer
Table 1
Institute of Medicine and American Society of Clinical Oncology key components of
a survivorship care plan.
Brief summary of cancer diagnosis and treatment:
 Diagnosis (pathology and stage)
 Surgical procedures and dates
 Radiation treatment and dates
 Chemotherapy treatments and dates
 Endocrine therapy and dates
 Other therapies and dates
 Any complications experienced
 Relevant pathology and biomarker data
 Additional planned treatments and potential side effects
 Contact info for key treating physicians
Familial cancer risk assessment
Follow-up plan:
 Possible long-term and late effects and who to contact for persistent or
new onset symptoms
 Schedule for clinic visits - who is the coordinating physician, when/how
often
 Cancer surveillance, or other recommended tests - who is the coordinating
physician, how often
 Psychosocial, physical, financial, role function concerns
 Lifestyle behaviors to improve health
Data from Hewitt et al 6 and the American Society of Clinical Oncology.8
193
treatment (“financial toxicities”) are also associated with poor out-
comes. In Europe, one quarter of cancer survivors 2 years post diag-
nosis were living in poverty compared with 14% of the general
population.2 In the US, studies document that up to 34% of cancer sur-
vivors have gone into medical debt and between 1.2% and 3% have
filed for bankruptcy, 2.7 times the rate of the general population.13,14
In a recent study Ramsey et al13 demonstrated the tragic consequen-
ces of financial toxicity. Survivors who file for bankruptcy are almost
two times as likely to die compared with non-bankrupt survivors.
Given the growing population of older adults with pre-existing health
care needs combined with the high side-effect and toxicity burden
from new treatments, high-quality and high-value survivorship care
will likely be a pressing need for the foreseeable future.
Survivorship Care in GYN Oncology
The Society of Gynecologic Oncology has developed a survivorship
toolkit for GYN cancers (cervical, endometrial, ovarian and vulvar)
that can be found at https://www.sgo.org/clinical-practice/manage
ment/survivorship-toolkit/. Resources included in the toolkit include
sample SCPs for each of the cancers, along with a Gynecologic Cancer
Self-Care Plan with strategies to maintain a healthy lifestyle (available
at https://www.sgo.org/wp-content/uploads/2016/08/Gynecologic-
Cancer-Self-Care-Plan-FINAL.pdf). What is missing from the toolkit is
information on preventing, recognizing, and treating the wide range
of long-term and late effects of cancer and cancer treatment that
exert persistent impact on the health and well-being of GYN cancer
survivors.
Research and practice guidelines also need to take into account
the unique needs of diagnosis-specific subgroups of GYN cancer sur-
vivors. For example, the National Academies of Science, Engineering,
and Medicine’s Ovarian Cancer: Evolving Paradigms in Research and
Care15 highlighted the distinct survivorship trajectory and needs for
women with ovarian cancer. The often cyclical nature of diagnosis,
treatment, remission, and recurrence in ovarian cancer suggests that
survivorship is nonlinear and experienced as part of the long-term
management of active disease. Thus, optimal survivorship in ovarian
cancer depends upon ongoing discussions between the survivor and
her provider about goals of care and on the integration of symptom
management and supportive/palliative care throughout the care tra-
jectory, not just at the end of life. The following sections highlight
current survivorship care guidelines tailored to the most salient
needs of women with GYN cancers.
Current Guidelines for Survivorship Care for GYN Cancer Survivors
Surveillance During Post-Treatment Survivorship
All women with GYN cancers should have a detailed assessment
done at regular intervals.16,17 These assessments should be com-
pleted to ensure effective care coordination, to address weight and
health behaviors, and to identify and address reversible causes of
symptoms. Potential causes of ongoing or new onset of symptoms
include current disease status, changes in functional/performance
status, medications, comorbidities, prior cancer treatments, and psy-
chosocial concerns that may emerge once the intensity of the initial
diagnosis and treatment subsides.
In addition to surveillance for recurrence, women with GYN can-
cers should also be monitored for the development of second cancers.
All cancer survivors are at increased risk for developing second can-
cers, but multiple primary cancers are especially prevalent among
GYN cancer survivors. Over 68,000 women with cancers of the uter-
ine corpus, ovary, and uterine cervix are living with multiple primary
cancers, representing 15% of the total population of all female cancer
survivors living with multiple primary cancers.3 Screening for second
cancers is generally based on screening guidelines for cancer
194 G. Campbell et al. / Seminars in Oncology Nursing 35 (2019) 192 201

Table 2
Treatment, recurrence, and surveillance recommendations for gyn cancers according to cancer-specific national comprehensive cancer network guidelines18 21
and Society of
Gynecologic Oncology position statement.22

Ovarian Cervical/Vulvar Endometrial

Typical treatment Surgery + platinum-based chemotherapy. Early stages: Local disease: Surgery + brachytherapy or
Carbo-taxol regimens most common (I) Surgery or radiation EBRT for stage II
§ targeted therapies (eg, PARP inhibitors (II) Concurrent chemoradiation therapy Stage III - Surgery + chemo and/or radi-
or bevacizumab) with cisplatin-based regimen § surgery ation therapy
Later stages: Stage IV - When possible, surgery, fol-
Brachytherapy + EBRT + platinum-based lowed by chemotherapy and/or
chemotherapy radiation.
Recurrence rate for most common 75% to 80% Cervical: 35% 10%
stage at diagnosis Vulvar: 24%
Surveillance recommendations for prevention and early detection of recurrent disease
H&P including pelvic exam  Every 3 4 mos for 2 yrs  Every 3 6 mos for 2 yrs  Every 3 6 mos for 1 yr
 Every 4 6 mos for 3 yrs  Every 6 12 mos for 3 5 yrs  Every 3 12 mos for 2nd yr
 Annually after 5 yrs  Annually after 5 yrs  Every 6 12 mos for 2 5 yrs
 Annually after 5 yrs
Imaging and labs  Ca-125 prior to each H&P  PAP testing with every exam  Ca-125 prior to each H&P if elevated
 Imaging and additional labs based on  Imaging and additional labs based on prior to diagnosis
symptom or exam symptom or exam  Imaging and additional labs based on
symptom or exam
Patient education during surveil-  Symptoms of recurrence, health promotion behaviors (physical activity, nutrition, smoking cessation), sexual health (eg, dilators and/
lance visits or vaginal lubrication), potential long-term and late effects
Abbreviations: ERBT, external beam radiation therapy; H&P, history and physical; PARP, poly ADP ribose polymerase.

prevention in the general population, eg, the US Preventive Services
Task Force recommendations (https://www.uspreventiveservicestask
force.org/BrowseRec/Index/browse-recommendations). However, there
are also special guidelines for survivors of GYN cancers with known
germline mutations (eg, BRCA, Lynch syndrome). Typical treatment
approaches, recurrence rates, and recommendations for surveillance
are shown in Table 2.
Healthy Lifestyle Recommendations
Weight management through healthy diet and physical activity
The National Comprehensive Cancer Network recommends that
all cancer survivors achieve and maintain a healthy lifestyle. A
healthy lifestyle includes weight management through healthy diet
and regular exercise with the goal of maintaining a normal body
mass index (20 to 24.9). Recommendations for weight management
are especially important for survivors of endometrial cancer because
recent research suggests that overweight or obesity and diabetes
together are responsible for up to one third of these cancers world-
wide.23 Data are less clear, however, on the relationship between
weight and prognosis for women already diagnosed. There is some
data supporting decreased overall survival in endometrial and ovar-
ian cancer for women who are obese or underweight.24,25
Exercise recommendations include daily general activity, avoid-
ance of prolonged sitting, and regular moderate/vigorous activity. In
2010, the American College of Sports Medicine published physical
activity guidelines for cancer survivors confirming that in most cases
cancer survivors should follow the US Department of Health and
Human Services recommendation to strive for 150 minutes of moder-
ate or 75 minutes of vigorous activity per week. There are few ran-
domized trials related to safety or efficacy of exercise among GYN
cancer survivors, so no specific recommendations besides the US
Department of Health and Human Services guidelines can be made.
Several observational studies in GYN cancer survivors suggest that
those who engage in regular exercise experience less fatigue, depres-
sion, neuropathy, anxiety, and sleep dysfunction and better self-
reported quality of life.26,27 There was insufficient evidence for mak-
ing strength training recommendations but these researchers noted
that monitoring for lower extremity (LE) lymphedema with appropri-
ate modification of physical activity is prudent. Insufficient evidence
exists in any survivor population to support guidelines for or against
alternative exercise programs such as yoga, Pilates, or group sports.
The National Comprehensive Cancer Network, the American Insti-
tute for Cancer Research, the American Cancer Society, and many
other organizations agree that a diet rich in vegetables, fruits, and
whole grains; low in sugar and saturated fats; and limited in red and
processed meats is an important health promotion strategy for all
cancer survivors.28 To date there have been no published studies on
the effects of a healthy diet on GYN cancer survivors. The Gynecologic
Oncology Group/NRG LIVES (Lifestyle Intervention for Ovarian Cancer
Enhanced Survival) Study is a randomized clinical trial currently
underway to determine whether a 24-month diet and physical activ-
ity intervention can improve progression-free survival in women
treated for stage II IV ovarian cancer.29
Tobacco cessation
Evidence of the benefits of tobacco cessation on risk for recurrence
and second cancers is quite strong. For example, in studies of cervical
cancer, continued tobacco use following diagnosis was associated
with increased risk of disease progression and poorer survival.17,30
Despite the clear benefits, 37% of GYN cancer survivors continue to
smoke, compared with 25% of all cancer survivors.31,32 This high rate
of continued smoking highlights a missed opportunity for patient
education about the associations between smoking and poor long-
term outcomes.
Additional health promotion activities
All cancer survivors should minimize alcohol intake (no more than
one drink/day for women), practice sun safety, and follow-up with
primary care providers for age-appropriate health promotion and dis-
ease prevention screenings, interventions and immunizations
(annual flu shot, pneumococcal vaccine, tetanus [TD/TDAP], HPV for
those
26 years of age, shingles [zoster] for survivors >60 years who
are not immunocompromised). It should be noted that although even
low levels of alcohol intake have been associated with increased risk
for the development of certain cancers, the association is not clear in
either the diagnosis or recurrence of GYN cancers.24
Management of Long-term and Late Psychosocial and Physical Problems
Among GYN Cancer Survivors
Several studies have documented the prevalence and/or severity
of long-term and late effects of treatment for GYN cancers. Westin
and colleagues33 surveyed over 1,000 survivors who were a median

Table 3
Screening and management of common long-term and late effects experienced by women with GYN cancer.
Long-term/Late Effect
Psychosocial concerns
Sexuality and intimacy problems
LEL
Urinary symptoms
G. Campbell et al. / Seminars in Oncology Nursing 35 (2019) 192 201
Screening
 Routine screening at regular intervals:
worries or fears, lack of interest, sad or
depressed, difficulty performing daily
activities because of feelings, difficulty
sleeping, difficulty concentrating
 Further evaluation and referral for
PTSD/safety if indicated
 Screen for treatable contributing factors
(sleep, pain, fatigue, substance use,
comorbidities)
 Screen using Brief Sexual Symptom
Checklist for Women that includes level
of satisfaction and type of problem (eg,
lack of interest, decreased genital sen-
sation, decreased vaginal lubrication,
problem reaching orgasm, pain during
sex)
 Re-evaluate for response to treatment
and need for referral to specialist
(gynecology, psychology, sexual health
specialist)
 Screen for additional menopause-
related health risks (osteoporosis, car-
diovascular disease)
 Ask survivors about feelings of lower
extremity skin tightness, swelling, limb
heaviness, skin ‘weeping’
 Consider using standardized screening
tool such as that developed by Yost et al
(2013)
 Assessment of wide range of symptoms
including urinary, frequency, urgency,
dysuria, hematuria
 Urodynamic examination may be
needed to objectively classify pathology
of symptoms and guide treatment
Medical Management
 Address treatable contributing factors, eg, pain;
fertility preservation issues
 Pharmacologic: SSRIs; SNRIs (useful if also have
pain or hot flashes)
 Monitor for side effects
 Referrals to social support networks and spe-
cialists in psychology, sexual health, spiritual
health
Psychological concerns:
 Anxiolytics,
 Anti-depressants,
 Referral for integrative therapies
Vaginal symptoms
 Local estrogen treatment (rings, suppositories,
creams)
 Other topical prescriptions (eg, testosterone)
 Consider referral to appropriate specialist for
management
Pain with sexual activity:
 Topical vaginal therapies (see above)
 Vaginal dilators
 Ospemifene
 Prasterone
 Refer for pelvic physical therapy
 Topical anesthetics
Unable to achieve orgasm or less intense:
 Discussion of options (eg, vibrator, clitoral stim-
ulator, pelvic physical therapy)
 Referral to sexual health specialist
Low/lack of desire, libido, or intimacy
 Discussion of pharmacologic treatments
(androgens, bupropion, buspirone, flibanserin)
 Refer to lymphedema specialist (physician; Cer-
tified Lymphedema Therapist)
 Compression garments (check fit and age of
garment as well as survivor use of garment on a
regular basis)
 Progressive resistance training with compres-
sion garment
 Physical therapy with range of motion
 Manual lymphatic drainage
Urinary Incontinence
 Local estrogen therapy if not contraindicated
 Oxybutinin, antimuscarinic agents, or B3-adre-
norecep-tor agonists for urge incontinence
 Botulinim toxin for treatment of hyperactive
bladder
Interstitial or hemorrhagic cystitis
 Prevention with mesna, hyperhydration and
bladder irrigation during high-risk chemo/radi-
ation
 Treatment of acute/chronic cystitis with intra-
vesicular hyaluronic acid; hyperbaric oxygen
 Urinary diversion § cystectomy in intractable
cases
195
Patient/Family Education for Self-
management
 Reassurance that feelings are com-
mon and can be treated
 Education regarding normal recovery
phases after treatment, common
worries and strategies for coping
 Develop a plan for regular physical
activity and health nutrition
 Education about medication: 2 6
weeks’ time to take effect; potential
for withdrawal if stopped suddenly
Vaginal symptoms
 Non-hormonal treatments: vaginal
moisturizers, gels, oils; topical vita-
min D or E
 Lubricants for sexual activity: avoid
oil-based and those with perfumes
or dyes; warm prior to use; apply as
part of foreplay; reapply as needed
Pain with sexual activity (dyspareu-
nia):
 Use dilators 3 times/week for 10 15
minutes each time
 Experiment with different positions
(eg, side-lying) to find most comfort-
able position
Unable to achieve orgasm:
 Exploration of sensual touch and
intimacy
 Kegel exercises to strengthen pelvic
floor
 Treat other symptoms (pain and nau-
sea) before having sex
 Plan for intimacy when energy is
highest
Beware of activities that increase risk
for or severity of LEL:
 Prolonged standing
 Long distance travel
 Tight or constrictive clothes
 Airplane travel
 Lack of exercise
Survivors with lymphedema have a
higher risk of infection Care to keep
skin intact:
 Make a daily check of skin
 Keep toenails trimmed
 Apply moisturizer regularly
 Use an electric razor for shaving
 Use antibacterial ointment and soft
gauze to cover cuts
 Always wear well-fitting shoes and
socks
 Prevent sunburn by using sunscreen
with SPF 30 or higher
 Avoid extreme temperatures (eg, ice
packs or heating pads)
 Report any skin conditions which
might lead to infection including
rash
Urinary Incontinence
 Lifestyle management
 Bladder retraining
 Pelvic floor exercises
Interstitial or hemorrhagic cystitis
 Mixed evidence for the benefit of
cranberry juice or cranberry extract
(continued)
196 G. Campbell et al. / Seminars in Oncology Nursing 35 (2019) 192 201

Table 3 (Continued)

Long-term/Late Effect Screening Medical Management Patient/Family Education for Self-

management

Bowel disturbances
Post-treatment pain syndrome
Data from the National Comprehensive Cancer Network.16
Abbreviations: GI, gastrointestinal; LEL, lower extremity lymphedema, PM&R, physical medicine and rehabilitation; PTSD, post-traumatic stress disorder; SNRI, serotonin-norepi-
nephrine reuptake inhibitor; SSRI, selective serotonin reuptake inhibitor.
 Symptom reports do not accurately dis-
tinguish underlying pathology
 Endoscopic assessment if:
Is the patient >5 years after radio-
therapy (screen for 2nd cancers)
Any rectal bleeding
Comprehensive pain assessment:
 Quantify pain intensity, location and
quality
 Identify etiology, pathology
 Patient goals for comfort and function
Fecal incontinence: Fecal incontinence
 Stool bulking agent  Toileting exercises
 Anti-diarrheal agent  Use of over-the-counter bulking
 Topical sympathomi metic agent for passive agents
incontinence Constipation/evacuation disorder
 Consider referral for biofeedback  Dietary/lifestyle advice
 Consider defunctioning surgery  Bulk laxative
Consider referral to GI specialist if:  Stimulant laxative
 Patient awakened from sleep to defecate  Correct positioning for evacuation
 Troublesome urgency/fecal leakage/soiling/
incontinence
 GI symptoms prevent leading a full life
Myalgias, arthralgias General education
 Pharmacologic: NSAIDS, muscle relaxants, anti-  Pain may be acute or may appear
convulsants, SNRIs, tricyclic antidepressants, years after treatment in the irradi-
acetaminophen, COX-2 inhibitors ated area
 Ultrasonic stimulation, massage, acupuncture  Radiation can lead to scarring, adhe-
 Consider referral to pain management special- sions, fibrosis
ists, physical therapy, PM&R, palliative care Myalgias, arthralgias
Pelvic pain:  Physical activity, aquatic therapy,
 GI pain consider referral to gastroenterologist yoga
 Consider referral to urologist, gynecologist, or  Heat (paraffin wax, hot pack) or cold
rehabilitation (PM&R) pack
 Physical therapy for pelvic floor exercises Pelvic pain:
 Dorsal column stimulation for chronic cystitis  Ensure proper hydration
and chronic pelvic pain  Bowel regimen to prevent
Dyspareunia (see sexuality section above) constipation
For refractory pain, consider referral to pain man-
agement specialists

of 4.9 years from a diagnosis of GYN cancer to identify factors associ-
ated with ongoing health issues related to cancer treatment. In multi-
variate analyses that included a wide range of potential factors
associated with subsequent health issues, past treatment modality
was the factor most consistently associated with current health
issues. Treatments that included chemotherapy were associated with
cognitive changes and peripheral neuropathies, while treatments
that included radiation therapy were most closely associated with
sexual dysfunction and urinary problems. Notably, sexual dysfunction
was an important concern across all treatment modalities for survi-
vors of GYN cancers.33
Research suggests that the most common long-term and late
effects of GYN cancer diagnosis and treatment include general psy-
chosocial concerns, fatigue, sleep disturbance, peripheral neuropa-
thies, and memory problems, which are common concerns across all
types of cancer. Other issues with unique GYN cancer-specific mani-
festations include psychosocial concerns specifically regarding loss of
fertility, sexuality, and intimacy; LE lymphedema; urinary dysfunc-
tion; bowel problems; and post-treatment pain syndromes.17,33 35
Epidemiology of long-term and late effects are described below and
recommendations for assessment, medical management, and self-
management are summarized in Table 3.
Psychosocial concerns
Psychosocial concerns occur across the survivorship trajectory for
all cancers, but the nature of the concerns experienced by women
with GYN cancers is unique and may vary based on type of disease
and treatment received.34 Like survivors of other cancers, a substan-
tial proportion of GYN cancer survivors (about 43%) experience anxi-
ety, depression, fear of recurrence, concerns about the worries of
people close to them, uncertainty about the future36,37 and PTSD.38
PTSD is reported in one fifth of GYN cancer survivors, with the pro-
portion rising to nearly one third among women with advanced-stage
disease.39 Beyond general psychosocial concerns, young survivors of
GYN cancers report persistent concerns around loss of fertility.40
Ovarian cancer survivors worry about passing on genetic predisposi-
tion for the disease to their children and disclosing BRCA mutation
status to first-degree relatives41; cervical cancer survivors note self-
consciousness related to the stigma of having a cancer associated
with a sexually transmitted disease42; and endometrial cancer survi-
vors experience stigma related to associations between obesity and
their cancer and ‘survivor’s guilt’ related to having a highly curable
cancer.43
While psychosocial concerns may improve over time, this is not
universally true.44 Some women may not return to precancer levels
of psychosocial function. Younger women with GYN cancer report
the disease having a greater impact on their family life, social activi-
ties, health status, body image, and sexual function38,45 than do older
women.
Sexuality and intimacy
Sexual concerns are prevalent among women during treatment,46
as well as after treatment ends.47,48 Problems with intimacy (a feeling
of closeness) and sexuality (the capacity to engage in sexual activity)
occur in 30% to 100% of survivors.47 The physical effects of cancer
treatment can diminish women’s ability to engage in and enjoy sex-
ual activity. Bilateral oophorectomy results in surgically induced
menopause that causes vaginal dryness, hot flashes, painful inter-
course, and post-coital bleeding. Hysterectomy, oophorectomy, vul-
vectomy, vaginectomy chemotherapy, and/or radiation may lead to
anatomic changes, including pelvic nerve damage, shortening of the
vagina, clitoral removal, and lower limb swelling or lymphedema.
Changes in sexual arousal, reduced vaginal elasticity and lubrication,
dyspareunia, decreased genital sensitivity, and decreased intensity of
orgasm may also occur.
Psychosexual and emotional changes also occur during treatment
and into survivorship. A review by Abbot-Anderson & Kwekkeboom47
identified the wide range of psychosexual changes that can occur
 G. Campbell et al. / Seminars in Oncology Nursing 35 (2019) 192 201
among GYN cancer survivors. Changes in body image or fear and anx-
iety about sexual performance impact a women’s ability to engage in
and enjoy a healthy sex life. Some survivors report having negative
thoughts and emotions surrounding sexual contact and may blame
themselves or their partners for their cancer diagnosis, withdrawing
from sexual contact with partners because of fear of injury or recur-
rence. Risk for sexual concerns is highest among women carrying out
multiple roles (eg, mothers who are also employed outside the home
and/or caregiving for another adult) and women with pre-existing
communication difficulties with their partners. Women may feel a
responsibility to meet the sexual needs of their partners despite hav-
ing physical and emotional difficulties. Some women perceive their
partners as pulling away from them or having changing sexual roles.
Often, communication between the woman and her partner is
strained, creating several challenges for resolving sexual concerns
and maintaining an overall healthy relationship. For many women,
these changes occur abruptly without clear anticipatory guidance
from their providers and are compounded by women’s discomfort in
initiating discussions about sexuality.47
Managing the sexual needs of the woman and her partner can be
challenging (see Table 3 for current recommendations). New Ameri-
can Society of Clinical Oncology guidelines also emphasize that a
member of the health care team should initiate a discussion with all
survivors about sexual health and dysfunctions related to cancer and
cancer treatment; all patients should be offered counseling to
improve “sexual response, body image, intimacy, and relationship
issues, and overall sexual functioning and satisfaction,” and all treat-
able contributing factors should be addressed.49
LE lymphedema
Surgical lymph node dissection and/or pelvic radiotherapy can put
women at risk for LE lymphedema. Estimates of prevalence of LE
lymphedema among women with GYN cancers vary widely, from 2%
to 70%.17,50,51 The discrepant prevalence estimates are thought to be
because of variations in assessment and diagnostic methods.17 LE
lymphedema results from comprehensive surgical staging that
includes bilateral pelvic and para-aortic lymphadenectomy, irradia-
tion of the inguinal or pelvic nodal regions, or tumors that compress
lymphatic vessels.52 Women with cervical cancer treated with radia-
tion and survivors who are obese or otherwise have poor nutritional
status are at high risk of LE lymphedema; limb cellulitis and advanced
age also appear to increase risk. Preliminary studies suggest that
walking or exercise can reduce the risk of LE lymphedema. Because of
the morbidity associated with full lymph node dissections, sentinel
lymph node dissections and ultrastaging are gaining popularity in the
field of GYN oncology.53
LE lymphedema is characterized by patients as a feeling of fullness
or heaviness in one or both legs. Numbness, pain or achiness, tight or
hardened skin, stiffness or reduced range of motion and strength, and
infection are also often noted at presentation. Changes may be very
subtle, so detailed assessment is necessary. The impact of lymph-
edema on a woman’s life can be profound, including impaired sleep,
disruption in daily function (such as work, exercise, and social activi-
ties), and an overall reduction in quality of life.
Unfortunately LE lymphedema that results from surgery or radia-
tion therapy tends to be chronic and incurable. Treatment focuses on
reducing the swelling by using compression garments, manual lymph
drainage, and exercise, along with diligent skin care to prevent
infection.52,54
Urinary symptoms
Urinary symptoms and other pelvic floor disorders are highly
prevalent following treatment for GYN cancers.55 The most common
symptoms include urinary incontinence (UI), hyperactive bladder,
and interstitial cystitis. UI can include stress incontinence, urge
incontinence, or a combination of the two.56 UI from pelvic floor
197
dysfunction among GYN cancer survivors is associated with older
age, hormonal status, obesity, childbirth, smoking, and premature
menopause from surgical or radiation therapy. Whether UI is more
common among cancer survivors than among all women is not clear.
One study57 found that among GYN patients without cancer, 56% of
women reported some degree of UI (and 26% rated their UI as moder-
ate to severe), compared with 70% of survivors in the same clinic
(with 42% rating UI as moderate to severe). Treatment for UI initially
focuses on lifestyle and bladder management training, pelvic floor
exercises, and use of pessaries. Pharmacologic agents are added as
necessary (see Table 3), as well as consideration of surgical interven-
tion (eg, slings).
UI and other bladder toxicities associated with radiation therapy
(eg, fibrosis, loss of tissue compliance, interstitial cystitis) may occur
up to 20 years after treatment has ended.56,58 Intravesical hyaluronic
acid and hyperbaric oxygen are the most effective treatments for
post-radiation cystitis.59 Severe cases may require urinary diversion,
with or without cystectomy.
Bowel disturbances
Bowel disturbances (eg, abdominal cramping, constipation, diar-
rhea, fecal incontinence) are some of the most bothersome symptoms
reported by women with GYN cancers34,56,60,61 and likely result from
injury to parasympathetic nerves and/or damage to the intestinal
mucosa from surgery, radiation and/or chemotherapy. These symp-
toms have been shown to occur in higher frequency and severity
among survivors than in the general population,62 and to affect youn-
ger survivors (especially those receiving pelvic radiation for cervical
cancers) more than older survivors.45,61 Despite the evidence docu-
menting the high prevalence and bothersome nature of bowel distur-
bances among cancer survivors, few treatment guidelines exist that
take into account the specific pathology underlying long-term or
late-onset bowel disturbances. Furthermore, few cancer survivors
with bowel complaints are referred to specialists, and when they are
they are unlikely to see a gastrointestinal (GI) specialist with exper-
tise in long-term and late effects of cancer treatment.63 GI specialists
with expertise in treating cancer patients argue that symptoms are a
poor indicator of underlying pathology, and that objective assess-
ments of GI function can result in important changes in treatment.63
Recently, algorithms to guide assessment and management of GI tox-
icities especially those caused by radiation therapy have been
developed.60,63 65 A three-arm randomized controlled trial compared
targeted algorithm-based assessment and treatment of specific GI
symptoms delivered by a gastroenterologist versus a nurse versus
care as usual. The study found that patients receiving the targeted
interventions delivered by either the gastroenterologist or the nurse
saw a greater reduction in the symptoms compared with care as
usual. Furthermore, nurses rated the intervention as feasible to
deliver in the clinic setting.60
Post-treatment pain
Pelvic pain is more prevalent among GYN cancer survivors than
women without cancer,34,62 with more than 25% of survivors report-
ing ongoing pelvic pain.66 Types of post-treatment pain experienced
by GYN cancer survivors and the recommended management strate-
gies vary according to treatment regimen. A common source of post-
treatment pain is external beam radiation and, to a somewhat lesser
extent, low-dose brachytherapy for cervical and uterine cancer.
Almost 40% of patients treated with radiotherapy for cervical cancer
reported chronic pelvic pain, significantly higher than the rate
reported by healthy controls.67 Pelvic pain may result from radiation
therapy, fistulae, proctitis, cystitis, or enteritis.16 Pelvic pain may also
suggest cancer recurrence or a pelvic fracture in women who have
undergone pelvic irradiation.16 Therefore, new complaints of pelvic
pain after treatment should be thoroughly investigated.
198 G. Campbell et al. / Seminars in Oncology Nursing 35 (2019) 192 201
General Long-Term and Late Effects Common Across Cancer Survivors
In addition to hallmark issues that characterize the survivorship
experience of GYN cancer survivors, there are other long-term side
effects experienced by women that are common across a wide range
of cancers. Noteworthy among these are fatigue, sleep disturbances,
cognitive impairment, and neuropathy.
General Long-Term and Late Effects of Treatment
Fatigue
Cancer-related fatigue is an overwhelming feeling of tiredness
associated with cancer or cancer treatment. It is different from the
fatigue that results from the demands of everyday life. While most
commonly associated with the acute treatment phase, it is now rec-
ognized as an important long-term effect of cancer and treatment.
Fatigue is the most common long-term effect of treatment among
survivors of cancer in general and GYN cancers specifically, with
reported rates ranging from 60% to 90%, and higher rates in survivors
with a history of chemotherapy treatment.17,33,35,68 Currently, exer-
cise remains the most effective evidence-based treatment for cancer-
related fatigue and the National Comprehensive Cancer Network16
recommends at least 150 minutes of moderate intensity activity, two
to three sessions of strength training, and two sessions of major mus-
cle group stretching per week, in addition to regular daily activity.
Psychosocial interventions, including cognitive behavioral therapy,
psycho-educational interventions, and supportive expressive thera-
pies, have also demonstrated effectiveness. Patient and family educa-
tion about energy conservation (pacing, planning, prioritizing) should
be encouraged. Pharmacologic therapies (eg, psychostimulants) have
mixed findings and should only be used after failure of other inter-
ventions and after ruling out other causes of fatigue.16 Survivors who
report an initial onset of fatigue or worsening of fatigue after treat-
ment has concluded should be referred for evaluation of other poten-
tial causes. Similarly, other symptoms that are known to contribute
to fatigue (eg, pain, depression, sleep disturbances) should be evalu-
ated and treated.16
Cognitive impairment
Cognitive impairment is one of the most disruptive effects of GYN
cancer and its treatment17 and is reported by women across all types
of GYN cancers.34 Cognitive impairment is often colloquially termed
“chemo brain” or “chemo fog,” but it is not limited to chemotherapy
and can occur with any type of cancer treatment.69 Cognitive
impairment in cancer survivors typically manifests as memory loss,
decreased concentration, decreased psychomotor speed, and diffi-
culty with cognitive flexibility and higher order planning and judge-
ment, known as executive functions.17,69 It is estimated to occur in
between 25%70 and 75% of survivors.71
Noticeable cognitive changes may persist for years after diagnosis
and treatment.72,73 Some literature has linked cognitive impairment
to ongoing poor quality of life, although more research is needed to
understand relationships among the different domains of cognitive
impairment and various components of quality of life.69 Some
authors have suggested that increased fatigue and anxiety are associ-
ated with increased cognitive impairment,6,17 although it is not clear
whether increased fatigue and anxiety exacerbate cognitive
impairment, or whether the three symptoms simply co-occur.
Sleep disturbances
Insomnia and other sleep problems are common and distressing
among cancer survivors both during and after treatment.68 Among
GYN cancer survivors, 59% experience sleep disturbances, particularly
those who have undergone both surgery and chemotherapy.33 Treat-
ing and managing sleep problems can be complicated because sleep
problems may exist as direct effects of cancer and treatment, or they
may be symptoms of other issues such as anxiety, neuropathy, hor-
monal changes, or obstructive sleep apnea.16 The National Compre-
hensive Cancer Network’s survivorship guidelines16 suggest first
assessing for and treating these other issues; if sleep disturbances
persist, consultation with a sleep specialist may be indicated for fur-
ther evaluation and referral to evidence-based strategies such as cog-
nitive behavioral therapy and sleep hygiene education. While
pharmacologic treatments are commonly used for sleep disturbances,
it should be noted that the efficacy of pharmacologic interventions
has not been well established in the cancer population.68
Chemotherapy-Induced Peripheral Neuropathy
Chemotherapy-induced peripheral neuropathy (CIPN) is one of
the most prevalent and distressing toxicities of platinum and taxane
chemotherapy agents,74,75 which are mainstays of treatment for ovar-
ian, endometrial, and later stage cervical cancers. Nearly 60% of
women treated for ovarian cancer experience CIPN (Donovan HS,
Campbell G, Belcher S, et al. Prevalence of somatic peripheral neurop-
athy in survivors of a wide range of cancers: results from the 2010
LIVESTRONG survey. Unpublished data presented at UPMC Hillman
Cancer Institute Scientific Retreat, June, 2016), and for up to 75% of
those women the neuropathy persists for 6 months or more.76,77
CIPN typically presents as numbness and tingling in the fingers and
toes, but may also manifest as burning pain, decreased sensitivity to
touch and vibration, decreased deep tendon reflexes, and altered pro-
prioception.78 CIPN has been associated with long-term disability
among women with ovarian cancer.79 Currently there are no known
preventive measures for CIPN and few effective treatments. Histori-
cally, dose reduction or change in regimen has been a primary man-
agement strategy for CIPN,80 but the decreased survival implications
make these a suboptimal strategy. Administering duloxetine (a selec-
tive serotonin reuptake inhibitor) may decrease CIPN-related pain
severity81,82 and sensory deficits.83 A recent study suggests that phys-
ical activity and exercise are promising treatments for CIPN.84 Given
the general health benefits of physical activity for cancer survivors,
regardless of efficacy to improve CIPN, physical activity should be rec-
ommended by providers. Of concern, there appears to be widespread
clinical use of treatments with unproven efficacy and questionable
safety such as Acetyl-L-Carnitine. Recent American Society of Clinical
Oncology guidelines advocate cautious use of such agents until there
is clear evidence of their efficacy and safety.85
Discussion
In this article we have integrated recommendations from existing
survivorship and clinical practice guidelines with the unique experi-
ences and needs of women with GYN cancers to guide nurses in the
assessment, prevention, and management of long-term and late
effects in this population. Key survivorship care within the GYN can-
cer context includes healthy lifestyle recommendations, surveillance
for recurrence or second cancers, and management of long-term and
late effects of cancer and treatment. Those that are particularly salient
to survivors of GYN cancers include psychosocial concerns, problems
with sexuality and intimacy, LE lymphedema, urinary problems,
bowel disturbances, post-treatment pain syndrome, fatigue, sleep
disturbances, and peripheral neuropathy. Nurses caring for GYN
oncology patients should assess for the unique presentations of dis-
ease-specific and more general late- and long-term effects as dis-
cussed in this article.
Survivorship Care Planning
Much of the emphasis in care for cancer survivors has focused on
provision of SCPs. SCPs as originally conceptualized by the Institute of
Medicine and Commission on Cancer are a five-pronged approach
that includes preventive and surveillance activities, as well as
 G. Campbell et al. / Seminars in Oncology Nursing 35 (2019) 192 201
coordination of care in a patient-centered fashion and implementa-
tion of personalized plans based on assessment of individual risks,
needs, and preferences. However, in the US, survivorship care often
focuses on meeting Commission on Cancer targets for issuing and
documenting SCPs, with less energy focused on coordination across
the cancer care continuum and on personalization of plans based
upon an ongoing assessment of individualized needs.86
However, the use of SCPs with cancer survivors in general and
GYN cancer survivors specifically is not without controversy because
evidence for benefit is limited.87 De Rooij’s group88,89 found that the
use of SCPs was associated with higher symptom severity and greater
negative emotional impact in patients with endometrial cancer, and
decreased trust in the efficacy of the recommended treatment in
patients with ovarian cancer. The authors postulate that among
patients with endometrial cancer diagnosed in early stages, a SCP
may magnify the perception of disease seriousness, increase their
sensitivity to symptoms, and worsen their quality of life. Among
women diagnosed with advanced ovarian cancer, SCPs may have
increased their fears of recurrence, with related increases in worry
and depression.88 This study highlights the need for additional
research on SCPs and strategies for improving the discussions that
occur around the shared document. It may be advisable for nurses to
assess each patient’s knowledge and beliefs about her disease trajec-
tory, as well as her psychological concerns, before conducting a SCP
discussion, so that the discussion can be tailored to each woman’s
needs.
There is a developing consensus that a SCP should be viewed as a
tool for clinicians, rather than a solution in itself.90 To truly provide
high-quality survivorship care will require a concerted, coordinated
effort to (1) create systems for early detection of patients’ survivor-
ship needs; (2) ensure that all survivors have access to rehabilitation,
psychosocial, and palliative care; (3) implement support using a risk-
stratified approach that values and improves survivors’ self-manage-
ment; and (4) increase awareness and interventions to address the
inequities in access and the financial toxicity associated with cancer
and its treatment.2,90 In addition, the National Cancer Institute has
highlighted the shift in the demographics of cancer survivors,
referred to as the “Silver Tsunami,” estimating that three fourths of
all cancer survivors will be over the age of 65 by 2040.91 The unique
and complex health care needs of older cancer survivors are not yet
well described.
An Additional Note on Disparities in Survivorship Care and Research
Disparities in both quantity and quality of survival exist by race
and socioeconomic status in the US and by country of origin in
Europe. As we work to ensure improved access to quality of survivor-
ship for all,90 nurses must also continue to work to dismantle the cur-
rent barriers and systems that perpetuate disparities in survival
among GYN cancer survivors.
The focus of the current review article is on GYN cancer survivor-
ship care in high-resource countries. Unfortunately, women in
low-resource countries have inadequate access to standard-of-care
treatment for GYN cancers and to preventive strategies such as HPV
vaccines and Papanicolaou/HPV screening for cervical cancer. It has
been estimated that approximately 80% of the global burden of cervi-
cal cancer cases and deaths occur in low-resource countries.92 In
these countries, survivorship care has received less attention com-
pared with efforts to improve disease prevention, early detection,
and access to standard treatment to increase the number of individu-
als who survive a diagnosis of cancer. Ideally, once high-resource
countries successfully adopt and implement standard survivorship
care, low-resource countries can adapt these models to their needs.
In conclusion, current recommendations for survivorship care
include a coordinated plan of care shared with the survivor, her fam-
ily members, and members of the specialty and primary care teams;
199
ongoing surveillance for recurrent or new primary cancers; recom-
mendations for important health promotion activities; and manage-
ment of long-term and late effects of treatment common to survivors
of GYN cancers. Early identification of these persistent or late-onset
problems by nurses can facilitate early medical intervention while
also guiding women and family members on the best approaches for
long-term self-management to ensure optimal quality of life through-
out survivorship.
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