Living with and beyond gynecologic cancer: A summary of current trends and perspectives

Abstract

Cancer survivorship has gained increased awareness as a key aspect of cancer care over the past 40 years (Campbell et al., 2019; Halpern et al., 2016; National Research Council et al., 2006; Fitch et al., 2019; Marzorati et al., 2017, Romkey-Sinasac et al., 2021). Individuals living with and beyond gynecologic malignancies face unique cancer-related physical and psychosocial care needs that extend well beyond active treatment (Beesley et al., 2019). Underserved populations experience additional challenges due to intersecting disparities in social determinants of health deeply rooted structural and systemic barriers to healthcare (Canadian Cancer Statistics Advisory Committee, 2023; Helpman et al., 2022). A growing number of individuals will require survivorship care, as cancer incidence and survival rates increase in Canada (Brenner et al., 2024), and novel treatment approaches for gynecological cancers continue to progress (Harris, 2019). Oncology nurses play a pivotal role in providing ongoing assessment, comprehensive care coordination, and advocacy in cancer survivorship care for this population (Campbell et al., 2019; Cook et al., 2017; Horrill, 2022). This article provides an overview of current trends, unique needs, and implications for nursing practice in the care of all individuals living with and beyond endometrial, ovarian, and cervical cancers.

In 2022, an estimated 1.5 million Canadians were living with and beyond cancer (Brenner et al., 2024). Upward trends in new cancer diagnoses and improved survival outcomes have the potential to generate a significant impact on health systems requiring innovative and sustainable solutions to adequately address the long-term needs of this growing population (Brenner et al., 2024; Canadian Cancer Statistics Advisory Committee, 2023). Individuals diagnosed with gynecologic malignancies have unique needs and concerns during cancer survivorship care (Beesley et al., 2019). Systemic and physical barriers in healthcare delivery create disproportionate differences in incidence, survival, and mortality related to race, ethnicity, socioeconomic status, and gender identity (Canadian Cancer Statistics Advisory Committee, 2023). Oncology nurses are well-positioned to provide comprehensive cancer survivorship to individuals diagnosed with gynecologic malignancies (Cook et al., 2017) and advocate for change with regards to inequities in cancer outcomes for underserved populations (Campbell et al., 2019; Horrill, 2022).

The purpose of this article is to provide a summary of the current trends and unique needs of individuals living with and beyond endometrial, ovarian, and cervical cancers. These women face many similar challenges following the completion of their cancer treatment. Survivorship concerns in underserved populations are explored. A broad overview of the specialized oncology nurse’s role in supporting this population is also described within the present context of cancer survivorship care.

OVERVIEW OF SURVIVORSHIP

The term ‘cancer survivor’ first gained attention in 1985 with Dr. Fitzhugh Mullen’s essay Seasons of Survival (Campbell et al., 2019; Marzorati et al., 2017). Through reflection on his personal experience of living with cancer, Dr. Mullen raised awareness about the significant impacts of cancer that extend beyond active treatment and cure throughout one’s life (Campbell et al., 2019; Marzorati et al., 2017). Twenty years later, the Institute of Medicine (IOM)’s report From Cancer Patient to Cancer Survivor: Lost in Transition further solidified the definition of cancer survivorship (Campbell et al., 2019; Halpern et al., 2016; Romkey-Sinasac et al., 2021). Over the years since these influential works were published, cancer survivorship has gained increasing awareness and attention as an important aspect of cancer care (Beesley et al., 2019; Fitch et al., 2019; Halpern et al., 2016).

Today, cancer survivorship is broadly defined as the experience of living with cancer from diagnosis to end of life (Halpern et al., 2016). The term ‘survivor’ is typically used to characterize individuals living with a history of cancer, and may extend to include family members, friends, and caregivers who are also impacted by the cancer experience (Halpern et al., 2016; Marzorati et al., 2017). Although these descriptions of survivor and survivorship may denote a suitable classification for the broad healthcare needs related to living with cancer, it is important to acknowledge that many individuals do not identify with the term survivor and its meaning in the sociocultural context of their personal experience (Bell & Ristovski-Slijepcevic, 2013; Halpern et al., 2016; Marzorati et al., 2017). Many organizations have begun using alternate terminology, specifically living with and beyond (LWB) cancer, to describe cancer survivorship in a way that encompasses the entire experience without explicit use of the word survivor (Halpern et al., 2016).

In Canada, almost 250,000 individuals were diagnosed with cancer in 2024, an increase over previous years (Brenner et al., 2024). While cancer remains a leading cause of death, overall survival rates also have increased over the past three decades (Canadian Cancer Statistics Advisory Committee, 2023). Improvements in overall survival have led to an increasing number of individuals living with and beyond cancer (Brenner et al., 2024). Cancer and its treatment are associated with lasting effects, which have significant implications for survivorship (National Research Council et al., 2006). Cancer poses a significant burden on individuals, families, communities, and healthcare systems in Canada (Brenner et al., 2024; Fitch et al., 2019). A comprehensive and strategic approach to post-treatment care is imperative to maintain the well-being of individuals living with a history of cancer (National Research Council et al., 2006).

In 2024, uterine, ovarian, and cervical cancers accounted for approximately 5% of new cancer cases in Canada (Brenner et al., 2024). Ovarian cancer remains the fifth leading cause of cancer deaths in females, and there are concerning trends in increasing incidence of endometrial and cervical cancers (Canadian Cancer Statistics Advisory Committee, 2023). As treatment options for gynecological cancers continue to evolve, an increasing number of individuals will require long-term survivorship care (Harris, 2019). The increasing number of individuals living with cancer is driving efforts to move cancer survivorship care away from unsustainable, specialized oncology-based models to follow-up care led by other healthcare providers, such as general or family physicians, primary care nurse practitioners, or general oncology practitioners (Chan et al., 2023). There is a growing body of evidence around the beneficial effects of nurse-led coordination of survivorship care for gynecologic cancers (Beesley et al., 2019).

Endometrial (uterine) cancer

Endometrial cancer is the most common gynecologic malignancy in Canada (Canadian Cancer Statistics Advisory Committee, 2023), and it is expected to become the fourth most common cancer diagnosis in females (Brenner et al., 2024). The incidence and mortality rate for uterine cancers continue to rise despite a general decrease in cancer incidence and mortality rates (Canadian Cancer Statistics Advisory Committee, 2023). Furthermore, while net five-year survival for all cancers has improved in the past 30 years, survival rates have not increased for uterine cancers (Canadian Cancer Statistics Advisory Committee, 2023). Although endometrial cancer is associated with these adverse trends, five-year survival net survival for uterine cancer is currently estimated to be 83% (Canadian Cancer Statistics Advisory Committee, 2023). The increasing incidence and favourable survival outcomes indicate a growing number of individuals will require comprehensive cancer survivorship care to improve outcomes related to endometrial cancer (Jeppesen et al., 2019).

Cardiovascular disease is the most common cause of death in individuals diagnosed with endometrial cancer and individuals living with diabetes and endometrial cancer have an increased risk of cardiovascular mortality (Lees et al., 2021). It is imperative that healthcare providers working with this population understand, recognize, and address the most significant mortality risk factors associated with the disease (Lees et al., 2021). The post-treatment phase of cancer survivorship has is an ideal period to support health promotion activities that could improve outcomes related to overall well-being (Cusimano et al., 2019).

Low-grade endometrial cancer is highly associated with obesity (Cusimano et al., 2019). Individuals diagnosed with endometrial cancer may experience stigma around living with a diagnosis that is associated with bodyweight (Campbell et al., 2019), and some have expressed feeling a sense of blame with regards to the development of their cancer (Cusimano et al., 2019). While weight management has important implications for risk reduction and health promotion in individuals diagnosed with endometrial cancer (Campbell et al., 2019), guidance should focus on providing adequate information and supporting access to relevant services with the aim of fostering healthy behaviours regardless of body type (Cusimano et al., 2019). Healthcare providers should approach counselling in ways that do not reinforce or perpetuate the potentially detrimental healthcare avoidance behaviours that have been associated with weight stigmatization (Cusimano et al., 2019).

Ovarian cancer

Approximately 3,000 Canadians were diagnosed with ovarian cancer in 2024 (Brenner et al., 2024). Incidence rates of ovarian cancer have decreased over the past decade (Canadian Cancer Statistics Advisory Committee, 2023).; however, mortality rates remain high (Reade & Elit, 2019). In Canada, five-year survival for ovarian cancer is currently 44% (Canadian Cancer Statistics Advisory Committee, 2023). These negative outcomes have persisted for several decades, despite advances in treatment, as most individuals are diagnosed at an advanced stage (Reade & Elit, 2019), and many will develop resistance to standard chemotherapy (Tone et al., 2022).

Most individuals LWB ovarian cancer face significant long-term physical and psychosocial effects (Tone et al., 2022). Fatigue and fear of recurrence are the most common concerns (Tone et al., 2022). Individuals diagnosed with ovarian cancer report lower quality of life in psychosocial domains (Reb & Cope, 2019), and they experience anxiety, depression, and cognitive dysfunction more often than those living with other gynecologic malignancies (de Rooij et al., 2018). In a Canadian survey of individuals LWB ovarian cancer, only 18% of respondents were asked about cancer and treatment side effects during their follow-up clinic appointments, and only 11% were asked about psychosocial concerns (Tone et al., 2022). Given that ovarian cancer is typically associated with a long-term recurring pattern of treatment, surveillance, and relapse, integration of survivorship care should occur earlier in the care pathway to ensure needs are addressed sufficiently throughout the disease trajectory (Campbell et al., 2019).

Late-stage epithelial ovarian cancer is associated with higher recurrence and mortality rates than any other gynecologic malignancy (Tetteh, 2022). Fear of recurrence is a commonly held concern and source of uncertainty for individuals LWB ovarian cancer, particularly as trends in disease mortality shift toward an outlook of ovarian cancer as a chronic disease (Kyriacou et al., 2017). Individuals LWB ovarian cancer also experience uncertainty related to financial toxicities and alterations in social relationships (Tetteh, 2022). Uncertainty may be triggered by late and long-term effects of treatment, inadequate social support, and exposure to accounts of poor disease outcomes that may occur in spaces, such as peer support groups, where the intent was to seek support in coping with uncertainty (Tetteh, 2022). Individuals LWB ovarian cancer manage uncertainty by adapting to living with ambiguity; regulating intake of information and social interactions that may contribute to feelings of uncertainty; and finding a sense of control over their health by making changes in areas they are able to self-manage (Tetteh, 2022). It is imperative to screen for distress in this population to identify stressors related to uncertainty and direct management toward appropriate interventions that will improve overall quality of life (Tetteh, 2022).

Conversely, individuals diagnosed with earlier stage disease may experience survivor guilt in relation to considering their prognosis against that of individuals diagnosed with advanced cancer, a concept that may originate in traditional constructs, which have reserved the term cancer survivor for individuals who are cured (Tetteh, 2022). Feelings of guilt may also arise when individuals question the validity of their cancer experience in comparison to the experience of those facing worse symptoms, more intense treatment protocols, or end-stage disease (Tetteh, 2022). All individuals LWB ovarian cancer should have an open opportunity to share their experiences in a way that eliminates pressures to measure themselves against the normative expectations and outcomes associated with the ovarian cancer experience (Tetteh, 2022).

Cervical cancer

The incidence of cervical cancer is increasing in Canada for the first time in four decades and it is currently the most rapidly increasing cancer in females (Canadian Cancer Statistics Advisory Committee, 2023). In 2024, there was an estimated 1,600 new diagnoses of cancer of the cervix in this country (Brenner et al., 2024). Rates of cervical cancer differ across subpopulations and the rising trends are associated with multiple contributing factors, including decreased screening uptake, declining vaccination rates, and higher rates of human papillomavirus (HPV) infection (Canadian Cancer Statistics Advisory Committee, 2023). Most individuals LWB cervical cancer are under age 50 at the time of diagnosis and, therefore, this population may have unique age-specific concerns that impact health and well-being for an extended period after completion of treatment (Johnson et al., 2019; Maguire et al., 2015).

Individuals LWB cervical cancer have reported insecurities around receiving a diagnosis that is related to HPV infection (Campbell et al., 2019). Others report experiencing shame and social isolation due to compromised perspectives towards intimacy and desirability in current or future relationships (Maguire et al., 2015). Some racialized populations may avoid pursuing support or engaging in supportive services due to feelings of embarrassment and stigma related to living with cervical cancer (Jeyapalan, 2023).

Gynecologic cancer survivorship needs

Gynecologic cancer and gynecologic cancer treatment are associated with a wide range of side effects and unique survivorship care needs that have a direct impact on individuals’ long-term health and well-being (Campbell et al., 2019; Galica et al., 2022; Lokich, 2019; Reb & Cope, 2019). Long-term effects may include physical and psychosocial changes, alterations in sexual and reproductive health, and financial toxicities (Campbell et al., 2019; Harris, 2019; Lokich, 2019; Tone et al, 2022). General survivorship care needs across all gynecologic malignancies include assessment, management, and education around long-term effects; psychosocial support; and coordination of care and access to support services (Galica et al., 2022; Maguire et al., 2015; Reb & Cope, 2019). Survivorship care needs may vary depending on disease, treatment, or sociodemographic characteristics, and these needs often change with increasing time from completion of treatment (Galica et al., 2022).

Physical effects of cancer and cancer treatment for individuals LWB gynecologic malignancies include fatigue, pain, lower extremity lymphedema, gastrointestinal and urinary dysfunction, menopausal symptoms, sleep disturbances, and cognitive dysfunction (Beesley et al., 2019; Campbell et al., 2019; Galica et al., 2022; Lokich, 2019; Maguire et al., 2015). Fatigue is one of the most prevalent physical effects of cancer and cancer treatment with long-term implications for overall health and quality of life (Beesley et al., 2019; Campbell et al., 2019; Lokich, 2019). Individuals LWB gynecologic cancer are more likely to experience pelvic pain than individuals without cancer, and almost half of individuals treated with radiotherapy for cervical cancer will experience pelvic pain (Campbell et al., 2019). Persistent neuropathic pain may occur in association with common chemotherapeutic agents used in the treatment of gynecologic malignancies (Campbell et al., 2019; Lokich, 2019). Pelvic radiation, pelvic and paraaortic lymph node dissection, and tumour invasion or compression of the lymphatic system are risk factors for lymphedema in the lower extremities (Beesley et al., 2019; Campbell et al., 2019; Lokich, 2019). Long-term effects related to gastrointestinal and urinary dysfunction may include incontinence, diarrhea, constipation, and abdominal cramping (Campbell et al., 2019). Treatment-induced menopause can lead to bothersome effects including vaginal dryness, vasomotor symptoms, dyspareunia, mood changes, and sleep disturbances (Campbell et al., 2019; Harris, 2019; Lokich, 2019). Up to 60% of individuals LWB gynecologic cancer will experience sleep disturbances, the cause of which is often multifactorial (Campbell et al., 2019). Cognitive dysfunction can have a significant impact on quality of life for individuals LWB gynecologic cancer (Lokich, 2019), with symptoms including memory loss, diminished processing and concentration, and problems with executive functioning (Campbell et al., 2019).

Concerns around sexual health and intimacy occur in up to 100% of individuals LWB gynecologic cancers (Campbell et al., 2019; Harris, 2019). Surgery, radiation, and chemotherapy may induce treatment-related menopause or primary ovarian insufficiency (Chan & Wang, 2017; Harris, 2019). These changes can have a significant impact on sexual and psychological health (Harris, 2019), as well as fertility (Chan & Wang, 2017). Common concerns with sexual function include painful intercourse secondary to radiation-induced scarring, treatment-induced ovarian dysfunction and menopause with associated symptoms of vaginal dryness and decreased libido, alterations in body image related to physical changes with surgery, and decreased interest in sexual intercourse secondary to general cancer-related distress (Goldman & Abel, 2021; Harris, 2019). Pelvic radiation can disrupt embryo implantation and affect complications in pregnancy including preterm delivery, low birth weight, and miscarriage secondary to endometrial fibrosis, atrophy, decreased uterine volume, and shortened cervical length (Chan & Wang, 2017). Chemotherapy agents commonly used to treat gynecologic malignancies can often be gonadotoxic leading to chemotherapy-induced ovarian failure (Chan & Wang, 2017).

Most individuals LWB gynecologic malignancies report psychosocial concerns (Campbell et al., 2019; Lokich, 2019), yet many report that needs are unmet with regards to their emotional well-being (Galica et al., 2022). Fear of recurrence is consistently one of the most common survivorship concerns in this population (Galica et al., 2022; Tone et al., 2022). Other sources of distress include uncertainty, lack of ongoing social support, negative impacts on relationships, and worry about loved ones (Campbell et al., 2019; Galica et al., 2022; Lokich, 2019). Individuals may also experience anxiety, depression, and post-traumatic stress disorder (PTSD; Campbell et al., 2019; Galica et al., 2022; Lokich, 2019).

Individuals LWB gynecologic cancer often experience practical concerns related to diagnosis and treatment (Maguire et al., 2015; Tone et al., 2022). Financial toxicities may result from changes in employment status or out-of-pocket travel and medical expenses (Galica et al., 2022; Lokich, 2019; Lopex et al., 2019). Individuals report a desire to return to work to regain a sense of normalcy (Galica et al., 2022), yet many express concerns around returning to their previous level of function at work due to physical and emotional challenges (Galica et al., 2022; Maguire et al., 2015).

UNDERSERVED POPULATIONS

Multiple, intersecting social determinants of health have a negative impact on cancer outcomes in marginalized communities (Helpman et al., 2022). In Ontario, people living in marginalized communities are more likely to receive a diagnosis of endometrial cancer at an advanced stage (Helpman et al., 2022). Marginalization is an independent indicator for survival outcomes, and marginalized groups experience significantly lower survival rates for early-stage endometrial cancer (Helpman et al., 2022). Disparities related to income, material deprivation, and residential instability are associated with increased risk of cancer-related death (Helpman et al., 2022). Inequities in the social determinants of health are also associated with adverse disease-related outcomes in ovarian and cervical cancers (Reade & Elit, 2019). There is an opportunity to improve cancer survivorship outcomes in these populations through conducting further research that seeks to identify and evaluate interventions that may reduce disparities in cancer care service delivery (Helpman et al., 2022; Reade & Elit, 2019).

Indigenous Peoples’ communities

Cancer incidence and mortality rates are increasing in Indigenous Peoples’ communities in Canada (Beckett et al., 2021). Cancer is the most common cause of death among Inuit (Beckett et al., 2021; Enuaraq at al., 2021). Metis individuals are at higher risk of developing cervical cancer and First Nations people experience poorer survival outcomes for cervical and ovarian cancer compared to non-Indigenous people in Canada (Beckett et al., 2021). Disparities in cancer outcomes are deeply imbedded in colonial legacies that create inequities in access to culturally safe oncology services (Beckett et al., 2021; Horrill, 2022).

Indigenous Peoples view wellness from a holistic lens, which encompasses physical, emotional, mental, and spiritual elements (Gifford et al., 2021). Western-based approaches to cancer survivorship care may reinforce colonialism and power differentials in healthcare by failing to consider the importance of traditional practices in healing and well-being (Enuaraq at al., 2021). Principles of traditional healing are highly valued by Indigenous individuals living with a history of cancer, yet these practices are under-represented in conventional survivorship programs (Gifford et al., 2021). Traditional ways of life, communication, and family involvement are central components in the meaning of culturally safe survivorship care for Inuit (Enuaraq at al., 2021). Factors that could enhance survivorship care include patient navigation, designated spaces, and family support. However, barriers underpinned by problematic sociopolitical structures continue to limit access to culturally safe services for Inuit (Enuaraq at al., 2021).

Culturally appropriate and community-based cancer survivorship services are rare in Indigenous communities (Beckett et al., 2021). There is a lack of research evaluating interventions to improve Indigenous Peoples’ cancer survivorship care (Gifford et al., 2021). Collaborative, Indigenous-led research initiatives are essential to improving cancer service delivery for Indigenous Peoples’ communities (Beckett et al., 2021). Indigenous participation and leadership are imperative in developing, implementing, and evaluating cancer care strategies to maintain processes that respect Indigenous Peoples’ ways of knowing (Gifford et al., 2021).

Racialized communities

Although there is evidence around disparities in cancer screening and healthcare delivery for Black people living in Canada, the impact of cancer and implications for culturally safe care are poorly understood, secondary to a lack of Canadian research specific to ethnic and racial data (Cénat et al., 2023). According to a systematic review conducted by Arthur et al. (2022), there is evidence that racialized populations experience similar sexual health and well-being concerns to non-racialized individuals, however guidelines for sexual health interventions in cancer survivorship specific to racialized groups are lacking. Understanding the unique cultural needs of racialized individuals LWB gynecologic cancer is imperative in providing sexual healthcare tailored to the unique cultural needs and disease outcomes of this population (Arthur et al., 2022).

2SLGBTQIA+

Two-spirit, lesbian, gay, bisexual, transgender, queer, intersex, asexual, and other gender and sexually diverse people (2SLGBTQIA+) experience persistent disparities in cancer outcomes due to barriers in healthcare access including discrimination, stigma, and lack of knowledge and research around 2SLGBTQIA+-specific health needs (Goldman & Abel, 2021; Jeyapalan, 2023; Scime, 2019). Lesbian, gay, bisexual, and transgender (LGBT) individuals LWB cancer face unmet survivorship needs (Seay et al., 2018). Rates of depression, anxiety, and PTSD are higher in LGB people compared to heterosexual individuals LWB cancer (Schefter et al., 2022). LGBT people diagnosed with gynecologic cancers are at greater risk for poor mental health outcomes and may require additional psychosocial support (Schefter et al., 2022). A gynecologic cancer diagnosis could be closely related to gender identity and sexual orientation (Schefter et al., 2022). Recognizing cancer survivorship needs in 2SLGBTQIA+ people is imperative, and frequent contact with healthcare providers during follow-up care presents a major opportunity to assess and address mental health needs (Schefter et al., 2022).

There are limited resources available to meet the unique needs of 2SLGBTQIA+ individuals LWB gynecologic cancers (Seay et al., 2018). LGBT people may not feel comfortable utilizing support services and information resources built around the cisgender, heterosexual experiences (Seay et al., 2018). Applying broad recommendations to 2SLGBTQIA+ people should only occur with care and consideration of the sociocultural context of this population (Goldman & Abel, 2021). Understanding health disparities in 2SLGBTQIA+ populations will inform development and implementation of inclusive survivorship interventions and services (Schefter et al., 2022).

Younger and older adults

While younger and older adults often share common concerns across their experiences with cancer, there may be unique age-related needs within each age group (Lopez et al., 2019). Care processes for older adults diagnosed with gynecologic malignancies may differ from that of younger populations, leading to disparities in disease outcomes (Jeyapalan, 2023; Reade & Elit, 2019). Younger individuals LWB gynecologic cancer experience unique concerns related to the sequalae of long-term effects associated with cancer treatment (Lopez et al., 2019). Loss of fertility is a common concern for this population (Maguire et al., 2015; Tone et al., 2022). Young women LWB gynecologic cancer describe traumatic experiences around being childless due to loss of fertility and alterations in self-identity and body image with associated impacts on intimate relationships (Galica et al., 2022). This population has also expressed an increased need for information around managing fertility-related concerns, early menopause, and sexual dysfunction (Lopez et al., 2019). On the other hand, older adults LWB gynecologic cancer have highlighted a need for more support for family and support people (Lopez et al., 2019). Long-term effects of cancer and cancer treatment may not be directly age-related. However, age is an important consideration in assessing survivorship care needs and tailoring recommendations for individuals LWB gynecologic cancer (Lopez et al., 2019).

IMPLICATIONS FOR ONCOLOGY NURSING PRACTICE

Comprehensive cancer survivorship care for individuals LWB gynecologic cancers should involve disease surveillance, assessment and management of long-term effects, care coordination, education, and health promotion (Beesley et al., 2019; Campbell et al., 2019; Johnson et al., 2019; Lokich, 2019; Sacharian, 2021). As providers of holistic, patient-centred care, oncology nurses are ideally suited to deliver evidence-based survivorship care to this population (Cook et al., 2017; Johnson et al., 2019). Specialist nurses can anticipate, identify, and support survivorship needs as they evolve by conducting ongoing assessments throughout the disease continuum (Cook et al., 2017; Maguire et al., 2015). Individuals LWB gynecologic cancers value specialist nurses’ clinical expertise and advanced knowledge, and they feel nurses can spend more time with them, which fosters a trusting relationship and allows for a better understanding of their needs and concerns (Cook et al., 2017). This population should have access to specialized nursing care (Cook et al., 2017).

Most cancer survivorship care guidelines discuss the importance of addressing sexual function in long-term follow-up (Campbell et al., 2019; Goldman & Abel, 2021). However, sexual dysfunction remains poorly addressed in clinical settings (Harris, 2019). Sexual function and related concerns should be addressed as part of routine follow-up, as individuals tend to experience increasing sexual health-related distress after primary treatment (Goldman & Abel, 2021). Knowledge of the long-term implications of gynecologic cancer on sexual health is vital to guiding assessment and management of these concerns (Harris, 2019). Individuals who received sexual counselling with information about improving sexual health were better able to cope with these changes (Galica et al., 2022). Conversations around sexual health should start with diagnosis and continue through follow-up care (Harris, 2019). Healthcare providers should use open-ended questions when engaging in discussion around sexual well-being (Goldman & Abel, 2021). Evidence-based communication tools such as the basic PLISSIT model are recommended to guide these discussions (Harris, 2019). Nurses can also screen for sexual health concerns using the Brief Sexual Symptom Checklist for Women (Campbell et al., 2019). Concerns around sexual health should prompt further evaluation, and interventions should be provided to adequately address the individual’s specific concerns (Goldman & Abel, 2021). Psycho-educational programs have been effective in improving physical function with regards to sexual health, but sexual concerns were not necessarily resolved with these methods (Beesley et al., 2019).

Counselling is the most impactful intervention to address psychosocial concerns in cancer survivorship, and it is the most beneficial intervention in improving emotional well-being and quality of life overall (Beesley et al., 2019). It is recommended that individuals experiencing distress related to alterations in psychosocial, emotional, reproductive, and sexual health receive psychosocial support or counselling (Galica et al., 2022). Fear of recurrence is a common source of distress in individuals LWB ovarian cancer (Galica et al., 2022; Kyriakou et al., 2017). Oncology nurses can use validated tools to identify individuals LWB ovarian cancer who are facing fear of recurrence (Kyriacou et al., 2017). Nurse-led psychosocial interventions could support and empower individuals to self-manage their fear of recurrence (Kyriacou et al., 2017).

As contact with oncology specialists becomes less frequent in post-treatment follow-up, specialist nurses play a key role in care coordination and accessibility while providing ongoing support and education (Cook et al., 2017). Oncology nurses can facilitate collaboration within the interdisciplinary team to promote ongoing cancer screening and prevention activities (Sacharian, 2021). They also can provide relevant information during transitions to primary care to assist in seamless continuity of care across services (Sacharian, 2021). Informational needs in gynecologic cancer survivorship include communication regarding signs and symptoms of recurrence, details about potential long-term side effects to self-monitor better and manage these concerns, contact information for oncology care providers or sources of specialized services, and education around health promotion activities to reduce the risk of recurrence and new cancers (de Rooij et al., 2018; Galica et al., 2022). Individuals should receive information around symptoms of recurrence, potential long-term effects, sexual health, and health promotion activities at each follow-up visit (Campbell et al., 2019).

Survivorship care plans (SCPs) were a key component of the IOM’s recommendations for quality cancer survivorship care (National Research Council et al., 2006; Campbell et al., 2019; de Rooij et al., 2018). Today, the use of SCPs varies across Canada (Romkey-Sinasac et al., 2021), and there is inconsistent evidence around their use in follow-up care for gynecologic cancers (Campbell et al., 2019; de Rooij et al., 2018; Lokich, 2019). However, individuals LWB gynecologic cancers have reported SCPs were useful communication tools in follow-up care (Galica et al., 2022), and their use may promote an individualized approach to care planning to address the ongoing, multidimensional needs in survivorship (de Rooij et al., 2018).

Nurses are often seen as change agents and advocates for sociopolitical justice (Horrill, 2022). Oncology nurses have identified their role as care coordinators and healthcare access navigators for Indigenous Peoples at the individual level, but their role in promoting community-led strategies to optimize cancer survivorship care for Indigenous people also should be fostered, to propel the nursing role further as advocates for equitable healthcare access at the organizational, systemic, and structural levels (Horrill, 2022). It is also important to note that cancer survivorship care should not be implemented based on standardized models and expected outcomes that do not embody the unique experience of marginalized populations (Truant et al., 2019). Further research around cancer survivorship in underserviced groups is necessary to determine the effectiveness and suitability of models of care in these populations (Chan et al., 2023; Halpern et al., 2016).

Nurse-led initiatives and follow-up programs are gaining interest as alternative models of survivorship care (Beesley et al., 2019; Halpern et al., 2016). Evidence suggests nurse-led cancer survivorship care models of follow-up after primary treatment have a positive impact on quality of life, care coordination, psychosocial well-being, and sexual and physical function (Beesley et al., 2019). Evidence suggests alternative, non-specialist-led models of care reduce costs for patients and healthcare systems while improving quality of life and continuation of care without having a negative impact on key survivorship outcomes (Chan et al., 2023). Widespread adoption of nurse-led cancer survivorship care models will require an organizational culture shift in the current perceptions of nursing roles in oncology programs (Truant et al., 2019).

CONCLUSION

Cancer survivorship care is gaining attention, as the number of individuals living with and beyond cancer continues to rise in Canada. Individuals LWB endometrial, ovarian, and cervical cancer face unique challenges well beyond the active treatment phase of the cancer continuum. Underserved groups face additional disparities secondary to inequities in access to cancer care, which intersect with disparities in the social determinants of health. Oncology nurses possess key skills and clinical expertise to support individuals LWB gynecologic cancers throughout all phases of cancer survivorship. Further research evaluating nurse-led gynecologic cancer survivorship care models could inform sustainable adoption and implementation of these programs in cancer care systems.