Body mass index and the diagnosis of endometriosis: Findings from a national data linkage cohort study.

BACKGROUND: Women with lower body mass index (BMI) have a higher risk of surgically confirmed endometriosis but this finding runs counterintuitive to the oestrogen-dependent theory for the disease. Increasingly, endometriosis is diagnosed via non-surgical methods. We examined BMI at age 18-23 years, and changes in BMI, and the risk of endometriosis according to the diagnostic method. METHODS: We analysed data from 11 794 young women, born in 1989-95, who completed six surveys as part of an Australian, longitudinal cohort study between 2013 and 2018. Women's survey responses were linked to administrative health records to identify endometriosis. Cox proportional hazards models modelled associations between BMI at age 18-23 years, and changes in BMI, and endometriosis. Analyses were stratified by the diagnostic method of endometriosis: clinically confirmed endometriosis (based on hospital discharge diagnosis) versus clinically suspected endometriosis (women's reports of physician-diagnosed endometriosis). RESULTS: There were 223 cases of clinically confirmed endometriosis and 396 cases of clinically suspected endometriosis. Women who gained weight after age 18-23 had lower risk of clinically confirmed endometriosis than women without endometriosis whose weight remained stable (HR = 0.64, 95% CI = 0.47-0.88). Women who were overweight (HR = 1.29, 95% CI = 1.01-1.66) at age 18-23 had higher risk of clinically suspected endometriosis than women of normal weight without endometriosis. CONCLUSIONS: The risk of clinically confirmed endometriosis was lower among women who gained weight compared to women with stable weight. The risk of clinically suspected endometriosis was higher among women who were overweight compared to normal weight.

Longitudinal changes in employment following a diagnosis of endometriosis: Findings from an Australian cohort study.

PURPOSE: Endometriosis is a chronic inflammatory disease affecting the reproductive, gastrointestinal, and urinary systems. We examined changes in labor force participation amongst women with endometriosis following diagnosis. METHODS: We analyzed data from 4494 women born in 1973-78 from the Australian Longitudinal Study on Women's Health. We used multinomial logistic regression models with generalized estimating equations to examine changes in labor force participation amongst 468 women with surgically confirmed endometriosis, and 375 women with clinically suspected endometriosis, relative to a comparison group of 4151 women without endometriosis. RESULTS: At diagnosis, women with surgically confirmed endometriosis were somewhat more likely to be working part-time (OR 1.26, 95% CI 0.94-1.68) or unemployed (OR 1.46, 95% CI 0.96-2.23) than before diagnosis. After diagnosis, women with surgically confirmed endometriosis remained somewhat more likely to be working part-time (OR 1.26, 95% CI 0.88-1.80) but were significantly more likely to be unemployed (OR 1.85, 95% CI 1.16-2.96) than before diagnosis. Labor force participation for women with clinically suspected endometriosis did not differ from women without endometriosis at diagnosis and did not change over time. CONCLUSIONS: Women with surgically confirmed endometriosis transitioned out the labor force following diagnosis. Supportive workplace practices may help women remain in the labor force.

Association between young women's physical and mental health and their method of contraception in a longitudinal, population-based study.

BACKGROUND: Women's physical and mental health are strongly inter-related and may influence patterns of contraceptive use. We examined the longitudinal associations between young women's physical and mental health and method of contraceptive use over a 5-year period. METHODS: Data from 4952 young women (≤27 years) participating in the Australian Longitudinal Study on Women's Health who completed four self-reported surveys between 2013 and 2017 were analysed. Women's contraceptive use was categorised as: contraceptive pill/oral contraceptives, long-acting reversible contraception (LARC), condom, other methods and none. Multinomial logistic regression was used to determine the longitudinal associations between women's physical and mental health and method of contraception. RESULTS: Over the 5-year period the percentage of pill users decreased from 60% (95% CI 58% to 61%) to 41% (95% CI 39% to 42%) and LARC users increased from 13% (95% CI 12% to 14%) to 21% (95% CI 20% to 22%) as did non-users from 9% (95% CI 8% to 9%) to 17% (95% CI 16% to 18%). Compared with women using the pill, women who used LARCs were more likely to be overweight (OR 1.34; 95% CI 1.17 to 1.53) and obese (OR 1.84; 95% CI 1.55 to 2.19), current smokers (OR 1.45; 95% CI 1.23 to 1.71) and reported fair or poor general health (OR 1.50; 95% CI 1.28 to 1.76) and very high levels of psychological distress (OR 1.47; 95% CI 1.24 to 1.76). Similar results were also found among women who used condoms or no contraception. CONCLUSIONS: Findings suggest that obesity, smoking and poor physical and mental health play an important role in young women's contraceptive use.

Consistency and Inconsistency of Young Women's Reporting of Intimate Partner Violence in a Population-Based Study.

We examined reporting of lifetime intimate partner violence (IPV) among 7,917 young women who completed two surveys, 12 months apart. At the first survey, 32% reported a history of IPV with a current or former partner. Of these, one third of women did not report IPV 12 months later (inconsistently reported IPV). Compared with women who consistently reported a history of IPV, women who inconsistently reported a history of IPV were less likely to report suicidal ideation, self-harm, illicit drug use, and smoking at the 12-month follow-up. A deeper understanding of what influences young women's reporting of IPV is needed.

Menstrual symptoms and risk of preterm birth: A population-based longitudinal study.

OBJECTIVES: To examine the prospective association between menstrual symptoms before pregnancy and preterm birth. METHODS: Secondary analysis of data from 14 247 young Australian women born between 1973 and 1978 who participated in a longitudinal, population-based cohort study between 1996 and 2015. Women were first surveyed at 18-23 years, and seven waves of data were collected at roughly three-yearly intervals. At each survey, women were asked about "severe period pain," "heavy periods," and "irregular periods" within the last 12 months. From 2009 onward, information on their children was collected, including birth dates and preterm birth (<37 weeks). Logistic regression using generalized estimating equations was used to examine prospective associations between self-reported menstrual symptoms before pregnancy and risk of preterm birth. RESULTS: Data from 6615 mothers who had 12 337 live singleton births were available for analysis. Among all births, women reporting severe period pain (adjusted odds ratio [aOR] 1.34 [95% CI 1.10-1.62]) or heavy periods (1.25 [1.02-1.53]) before pregnancy had higher odds of preterm birth. However, in analyses stratified by birth order, only severe period pain (2.05 [1.41-2.99]), heavy periods (1.77 [1.23-2.55]), or irregular periods (1.58 [1.10-2.28]) before a second or subsequent birth were associated with an increased risk of preterm birth. CONCLUSIONS: Severe period pain, heavy periods, and irregular periods before a second or subsequent birth may be associated with preterm birth.

"I Wasn't Gonna Let It Stop Me": Exploring Women's Experiences of Getting Through Chemotherapy for Ovarian Cancer.

BACKGROUND: Many women with ovarian cancer experience significant chemotherapy-related adverse effects during treatment and thus cannot complete it without dose reductions and/or delays. There is some indication that chemotherapy completion is associated with improved survival, although currently little is known about what helps women get through chemotherapy. OBJECTIVE: The aim of this study was to explore women's accounts of the factors they believed were helpful during their ovarian cancer treatment. METHODS: Using a qualitative approach within a critical realist framework, we conducted interviews with 18 women who had received chemotherapy for ovarian cancer and analyzed the data thematically. RESULTS: We identified 3 main themes related to women's experiences of dealing with chemotherapy: "optimistic tenacity," which illustrates a specific stoic identity that women assumed during treatment; "self-care," which reflects the health behaviors and activities women engaged in and lifestyle adjustments they made; and "support systems," which emphasizes the importance of social, emotional, and medical support and the specific needs shared by women undergoing treatment for ovarian cancer. CONCLUSIONS: Our findings contribute to a deeper understanding of women's unique experiences of treatment that may influence whether they complete chemotherapy for ovarian cancer. IMPLICATIONS FOR PRACTICE: This study highlights the central role of women's optimistic determination within a wider self-caring and well-supported context of treatment; we aim to provide feedback and guidance to health professionals caring for women with ovarian cancer.

Understanding mothers' decision-making needs for autopsy consent after stillbirth: Framework analysis of a large survey.

BACKGROUND: Experiencing stillbirth is devastating and leaves parents searching for causes. Autopsy is the gold standard for investigation, but deciding to consent to this procedure is very difficult for parents. Decision support in the form of clear, consistent, and parent-centered information is likely to be helpful. The aims of this study were to understand the influences on parents' decisions about autopsy after stillbirth and to identify attributes of effective decision support that align with parents' needs. METHODS: Framework analysis using the Decision Drivers Model was used to analyze responses from 460 Australian and New Zealand (ANZ) mothers who took part in a multi-country online survey of parents' experiences of stillbirth. The main outcomes examined were factors influencing mothers' decisions to consent to autopsy after stillbirth. RESULTS: Free-text responses from 454 ANZ mothers referenced autopsy, yielding 1221 data segments for analysis. The data confirmed the difficult decision autopsy consent entails. Mothers had a strong need for answers coupled with a strong need to protect their baby. Four "decision drivers" were confirmed: preparedness for the decision; parental responsibility; possible consequences; and role of health professionals. Each had the capacity to influence decisions for or against autopsy. Also prominent were the "aftermath" of the decision: receiving the results; and decisional regret or uncertainty. CONCLUSIONS: The influences on decisions about autopsy are diverse and unpredictable. Effective decision support requires a consistent and structured approach that is built on understanding of parents' needs.

Anxiety, depression and quality of life in people with pancreatic cancer and their carers.

BACKGROUND: People with pancreatic cancer have high levels of anxiety and depression and reduced quality of life (QoL), but few studies have assessed these outcomes for patient-carer dyads. We therefore investigated these issues in an Australian population-based study. METHODS: Patients with pancreatic cancer (n = 136) and many of their carers (n = 84) completed the Hospital Anxiety and Depression Scale (HADS) and Functional Assessment of Cancer Therapy QoL questionnaire at a median of three months after diagnosis. Overall QoL and well-being subscales (physical, social, emotional, functional) were compared with general population norms. Intraclass correlation coefficients were used to compare anxiety, depression and QoL scores of patients and their respective carers. RESULTS: Fifteen percent of patients and 39% of carers had HADS scores indicative of anxiety and 15% of patients and 14% of carers of depression, respectively. Overall, 70% of patients and 58% of carers had QoL scores below the Queensland population average. Patients' anxiety, depression, overall QoL, social, emotional and functional wellbeing scores were significantly related to those scores in their carers. Among patients and carers, accessing psychological help was associated with elevated anxiety. Not receiving chemotherapy was associated with elevated depression among patients and younger age was associated with poorer outcomes in carers. CONCLUSIONS: More carers had symptoms of anxiety than patients with pancreatic cancer, but symptoms of depression were similarly common in patients and carers. Further research is needed to assess whether interventions to reduce patients' distress could also improve QoL among carers, or whether carer-focussed interventions are required.

Is It Safe to Vape? Analyzing Online Forums Discussing E-Cigarette Use during Pregnancy.

INTRODUCTION: Electronic cigarette (e-cigarette) use, or vaping, is increasing against a backdrop of declining smoking rates. E-cigarettes contain fewer toxicants than cigarettes, but their appearance and mode of use has the potential to satisfy the habitual aspects of smoking. To date, we know little about lay perceptions of the safety of using e-cigarettes in pregnancy. METHODS: We conducted a thematic discourse analysis of 13 online discussion forum threads that discussed e-cigarette use during pregnancy. We focused on the major discursive strategies that forum posters used to debate the safety of e-cigarette use during pregnancy. RESULTS: We identified three distinct ways in which forum posters debated the safety of using e-cigarettes during pregnancy: 1) quitting (nicotine) cold turkey is unsafe, 2) vaping is the lesser of two evils, and 3) vaping is not worth the risk. CONCLUSIONS: Discussions about the safety of e-cigarettes drew on the premise that 1) immediate cessation of nicotine was potentially harmful and unsafe, 2) e-cigarettes were a harm reduction tool, or 3) vaping could be dangerous and should be avoided. Although these arguments are not necessarily specific to pregnancy (beside mentions of fetal-specific risks), this analysis points to the need to educate and support women about harm reduction options. IMPLICATIONS: Health professionals should be aware that some women may be currently using or considering using e-cigarettes in an effort to quit or reduce smoking. It is important that health professionals are equipped to educate women with accurate, up-to-date, and balanced information about the risks and benefits of e-cigarette use during pregnancy.

Risk factors for current and future unmet supportive care needs of people with pancreatic cancer. A longitudinal study.

PURPOSE: This study aims to determine if the supportive care needs of people with pancreatic cancer change over time and identify the factors associated with current and future unmet needs. METHODS: Australian pancreatic cancer patients completed a self-administered survey at 0-6 months post-diagnosis (n = 116) then follow-up surveys 2 (n = 82) and 4 months (n = 50) later. The validated survey measured 34 needs across five domains. Weighted generalised estimating equations were used to identify factors associated with having ≥1 current or future moderate-to-high unmet need. RESULTS: The overall proportion of patients reporting ≥1 moderate-or-high-level need did not significantly change over time (baseline = 70 % to 4 months = 75 %), although there was a non-significant reduction in needs for patients who had a complete resection (71 to 63 %) and an increase in patients with locally advanced (73 to 85 %) or metastatic (66 to 88 %) disease. Higher levels of pain (OR 6.1, CI 2.4-15.3), anxiety (OR 3.3, CI 1.5-7.3) and depression (OR 3.2, CI 1.7-6.0) were significantly associated with current needs. People with pain (OR 4.9, CI 1.5-15.4), metastatic disease (OR 2.7, CI 0.7-10.0) or anxiety (OR 2.5, CI 0.7-8.6) had substantially higher odds of reporting needs at their next survey. The prevalence of needs was highest in the physical/daily living and psychological domains (both 53 % at baseline). Pain and anxiety had respectively the strongest associations with these domains. CONCLUSIONS: Careful and continued attention to pain control and psychological morbidity is paramount in addressing significant unmet needs, particularly for people with metastatic disease. Research on how best to coordinate this is crucial.

Beyond survivorship? A discursive analysis of how people with pancreatic cancer negotiate identity transitions in their health.

We explored how people negotiate, and respond to, identity transitions following a diagnosis of pancreatic cancer. Interviews with 19 people with pancreatic cancer were analysed using thematic discourse analysis. While discursively negotiating two transitions, 'moving from healthy to ill' and 'moving from active treatment to end-of-life care', participants positioned themselves as 'in control', 'optimistic' and managing their health and illness. In the absence of other discourses or models of life post-cancer, many people draw on the promise of survival. Moving away from 'survivorship' may assist people with advanced cancer to make sense of their lives in a short timeframe.

A tsunami of unmet needs: pancreatic and ampullary cancer patients' supportive care needs and use of community and allied health services.

OBJECTIVE: People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer. No previous research has documented the supportive care needs of this population. Our objective was to describe people's needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection. METHODS: Queensland pancreatic or ampullary cancer patients (n = 136, 54% of those eligible) completed a survey, which assessed 34 needs across five domains (Supportive Care Needs Survey-Short Form) and use of health services. Differences by resection were compared with Chi-squared tests. RESULTS: Overall, 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs, whereas health system/information (32%), patient care (21%) and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included 'not being able to do things they used to do' (41%), 'concerns about the worries of those close' (37%) and 'uncertainty about the future' (30%). Patients with non-resectable disease reported greater individual information needs, but their needs were otherwise similar to patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18% and 15% consulted a dietician, complementary medicine practitioner or mental health practitioner, respectively. Palliative care access was greater (59% vs 27%) among those with non-resectable disease. CONCLUSION: Very high levels of needs were reported by people with pancreatic or ampullary cancer. Future work needs to elucidate why uptake of appropriate supportive care is low and which services are required.

Physical Health of Young, Australian Women: A Comparison of Two National Cohorts Surveyed 17 Years Apart.

INTRODUCTION: Very little is known about the extent of physical health issues among young women in early adulthood and whether this is changing over time. METHODS: We used data from two national samples of young women aged 18-23 years, surveyed 17 years apart, who participated in the Australian Longitudinal Study on Women's Health. We used multinomial logistic regression to compare the women's physical health (i.e., self-rated health, common symptoms and conditions) and identify whether sociodemographic factors, health behaviours and stress explained any physical health differences between the samples. RESULTS: Women aged 18-23 years in 2013 (N = 17,069) were more likely to report poor self-rated health and physical symptoms (particularly urogenital and bowel symptoms) than women aged 18-23 years in 1996 (N = 14,247). Stress accounted for a large proportion of the physical health differences between the cohorts, particularly for allergies, headaches, self-rated health, severe tiredness, skin problems, severe period pain and hypertension. CONCLUSIONS: Women's health appears to be changing, with young women born in more recent decades reporting greater physical symptom levels. Changing socio-cultural and economic conditions may place pressure on young adults, negatively affecting their health and wellbeing. Assessing the extent to which social structures and health care policies are offering adequate support to young women may offer avenues for promoting positive health and wellbeing.

Seeking Health Information Online: Association with Young Australian Women's Physical, Mental, and Reproductive Health.

BACKGROUND: Relatively little is known about the extent to which young adults use the Internet as a health information resource and whether there are factors that distinguish between those who do and do not go online for health information. OBJECTIVE: The aim was to identify the sociodemographic, physical, mental, and reproductive health factors associated with young women's use of the Internet for health information. METHODS: We used data from 17,069 young women aged 18-23 years who participated in the Australian Longitudinal Study on Women's Health. Multivariable logistic regression was used to estimate the association between sociodemographic, physical, mental, and reproductive health factors associated with searching the Internet for health information. RESULTS: Overall, 43.54% (7433/17,069) of women used the Internet for health information. Women who used the Internet had higher odds of regular urinary or bowel symptoms (OR 1.44, 95% CI 1.36-1.54), psychological distress (very high distress: OR 1.24, 95% CI 1.13-1.37), self-reported mental health diagnoses (OR 1.16, 95% CI 1.09-1.23), and menstrual symptoms (OR 1.25, 95% CI 1.15-1.36) than women who did not use the Internet for health information. Internet users were less likely to have had blood pressure checks (OR 0.85, 95% CI 0.78-0.93) and skin cancer checks (OR 0.90, 95% CI 0.84-0.97) and to have had a live birth (OR 0.74, 95% CI 0.64-0.86) or pregnancy loss (OR 0.88, 95% CI 0.79-0.98) than non-Internet users. CONCLUSIONS: Women experiencing "stigmatized" conditions or symptoms were more likely to search the Internet for health information. The Internet may be an acceptable resource that offers "anonymized" information or support to young women and this has important implications for health service providers and public health policy.

Prevalence, predictors, and correlates of supportive care needs among women 3-5 years after a diagnosis of endometrial cancer.

PURPOSE: The purpose of this study is to examine the prevalence, sociodemographic and clinical predictors, and physical and psychosocial correlates of unmet needs among women 3-5 years following treatment for endometrial cancer. METHODS: Women with endometrial cancer completed a survey around the time of diagnosis and again 3-5 years later. The follow-up survey asked women about their physical and psychosocial functioning and supportive care needs (CaSUN). Multivariable-adjusted logistic regression identified the predictors and correlates of women's unmet needs 3-5 years after diagnosis. RESULTS: Of the 629 women who completed the cancer survivors' unmet needs measure (CaSUN), 24 % (n = 153) women reported one or more unmet supportive care needs in the last month. Unmet needs at 3-5 years post-diagnosis were predicted by younger age (OR = 4.47; 95 % CI: 2.09-9.56) and advanced disease stage at diagnosis (OR = 2.47; 95 % CI: 1.38-4.45) and correlated with greater cancer symptoms (OR = 1.78; 95 % CI: 1.05-3.02), lower limb swelling (OR = 2.50; 95 % CI: 1.51-4.15), symptoms of anxiety (OR = 2.21; 95 % CI: 1.31-3.72), and less availability of social support (OR = 3.42; 95 % CI: 1.92-6.11). Women with a history of comorbidities (OR = 0.47; 95 % CI: 0.27-0.82) and those living in a rural area at the time of diagnosis (OR = 0.56; 95 % CI: 0.34-0.92) were less likely to report unmet needs. CONCLUSIONS: Sociodemographic, health, and psychosocial factors seem important for identifying women who will or will not have unmet needs several years following endometrial cancer. Longitudinal assessments of people's needs over the course of their cancer trajectory may be an effective way to identify areas that should receive further attention by health providers.

When mixed methods produce mixed results: integrating disparate findings about miscarriage and women's wellbeing.

PURPOSE: To discuss an example of mixed methods in health psychology, involving separate quantitative and qualitative studies of women's mental health in relation to miscarriage, in which the two methods produced different but complementary results, and to consider ways in which the findings can be integrated. METHODS: We describe two quantitative projects involving statistical analysis of data from 998 young women who had had miscarriages, and 8,083 who had not, across three waves of the Australian Longitudinal Study on Women's Health. We also describe a qualitative project involving thematic analysis of interviews with nine Australian women who had had miscarriages. RESULTS: The quantitative analyses indicate that the main differences between young women who do and do not experience miscarriage relate to social disadvantage (and thus likelihood of relatively early pregnancy) and to a lifestyle that makes pregnancy likely: Once these factors are accounted for, there are no differences in mental health. Further, longitudinal modelling demonstrates that women who have had miscarriages show a gradual increase in mental health over time, with the exception of women with prior diagnoses of anxiety, depression, or both. By contrast, qualitative analysis of the interviews indicates that women who have had miscarriages experience deep emotional responses and a long and difficult process of coming to terms with their loss. CONCLUSIONS: A contextual model of resilience provides a possible framework for understanding these apparently disparate results. Considering positive mental health as including the ability to deal constructively with negative life events, and consequent emotional distress, offers a model that distinguishes between poor mental health and the processes of coping with major life events. In the context of miscarriage, women's efforts to struggle with difficult emotions, and search for meaning, can be viewed as pathways to resilience rather than to psychological distress. Statement of contribution What is already known on this subject? Quantitative research shows that women who miscarry usually experience moderate depression and anxiety, which persists for around 6 months. Qualitative research shows that women who miscarry frequently experience deep grief, which can last for years. What does this study add? We consider ways in which these disparate findings might triangulate. The results suggest a need to distinguish between poor mental health and the experience of loss and grief. Adjusting to miscarriage is often emotionally challenging but not always associated with poor mental health.

Incidence, risk factors and estimates of a woman's risk of developing secondary lower limb lymphedema and lymphedema-specific supportive care needs in women treated for endometrial cancer.

OBJECTIVES: Few studies have assessed the risk and impact of lymphedema among women treated for endometrial cancer. We aimed to quantify cumulative incidence of, and risk factors for developing lymphedema following treatment for endometrial cancer and estimate absolute risk for individuals. Further, we report unmet needs for help with lymphedema-specific issues. METHODS: Women treated for endometrial cancer (n = 1243) were followed-up 3-5 years after diagnosis; a subset of 643 completed a follow-up survey that asked about lymphedema and lymphedema-related support needs. We identified a diagnosis of secondary lymphedema from medical records or self-report. Multivariable logistic regression was used to evaluate risk factors and estimates. RESULTS: Overall, 13% of women developed lymphedema. Risk varied markedly with the number of lymph nodes removed and, to a lesser extent, receipt of adjuvant radiation or chemotherapy treatment, and use of nonsteroidal anti-inflammatory drugs (pre-diagnosis). The absolute risk of developing lymphedema was >50% for women with 15+ nodes removed and 2-3 additional risk factors, 30-41% for those with 15+ nodes removed plus 0-1 risk factors or 6-14 nodes removed plus 3 risk factors, but ≤ 8% for women with no nodes removed or 1-5 nodes but no additional risk factors. Over half (55%) of those who developed lymphedema reported unmet need(s), particularly with lymphedema-related costs and pain. CONCLUSION: Lymphedema is common; experienced by one in eight women following endometrial cancer. Women who have undergone lymphadenectomy have very high risks of lymphedema and should be informed how to self-monitor for symptoms. Affected women need greater levels of support.

Women's perceptions of their lifestyle and quality of life several years after a diagnosis of endometrial cancer.

BACKGROUND: Few studies have examined the long-term changes experienced by women treated for endometrial cancer. OBJECTIVE: The objectives of this study were to describe what women perceived important to their lifestyle and quality of life in the years following their diagnosis and to provide new insights that might inform healthcare practice. METHODS: This was a thematic analysis of 237 open-ended comments from Australian women diagnosed with endometrial cancer 3 to 5 years previously. RESULTS: We identified 3 main themes: (1) personal change, in which women spoke about cancer as permanently altering their lives in mostly negative but sometimes positive ways; (2) continuity of former life, which described both the minimal impact of cancer on women's lives and identities and the difficulties negotiating this within the dominant "cancer survivorship" culture; (3) social support, where women wrote about how the quality of their relationships shaped their cancer trajectory. CONCLUSIONS: While typical "survivorship" issues exist for many women with endometrial cancer (eg, physical, emotional, sexual health changes), a proportion of women will not be focused on their cancer and can be encouraged to form lives and identities that are not situated within the "cancer survivorship" culture. IMPLICATIONS FOR PRACTICE: A network of support, sensitive to women's responses to having cancer, may benefit women's long-term adjustment. Regular standardized assessment of women's needs may facilitate appropriate support for those with concerns, whereas those without concerns could be reassured by health professionals that their experience is normal and shared by other people with cancer. This may encourage women to form lives that are personally meaningful.