Impacts of radiotherapy for gynaecological cancer on social,personal and sexual lives: A qualitative analysis of patient narratives

Contemporaneous narratives during radiotherapy treatment (contemporaneous project)

The contemporaneous study was undertaken in a large National Health Service (NHS) tertiary cancer centre in the North West of England, providing on-site radiotherapy and specialist gynaecological oncology services to a population of 2.4 million. Patients were identified from the hospital medical systems by the Clinical Effectiveness Team (CET) on a weekly basis. Personal information screened for included the following: name, date of birth, contact details, cancer diagnosis and whether they were scheduled to receive radiotherapy treatment. The CET highlighted potential participants to a research radiographer and lead research nurse. Potentially eligible participants were first approached by the lead research nurse/research radiographer who discussed the study with them and offered them the Participant Information Sheets. At this time, patients could choose to consent to take part in the study or they may opt to take more time to consider participation and consent at a later stage. For reasons of participant confidentiality, the name of the hospital is not disclosed.

Once a patient provided written consent to take part in the study, the patient contact details and demographic information were shared with the research team at Lancaster University. Following consent, a researcher from the university contacted participants to follow up and provide further information about participation in the study, including sending a participant guide (included in Supplemental Material).

Recruitment was aimed at individuals referred for radical or palliative radiotherapy for any gynaecological cancer representing a range of experiences.

Recruitment was set to continue until at least one journal entry had been collected from 30 patients. However, due to the suspension of research studies at the hospital site during the COVID-19 pandemic, the period for recruitment was limited. A second, online project was developed that recruited patients who had treatment for radiotherapy at any point in the past, from any radiotherapy centre in the United Kingdom.

Reflections on experiences of radiotherapy treatment (online project)

Participants were recruited to the online project through advertising on social media sites and via various cancer charities. Potential participants were asked to contact the research team by phone or e-mail, following which they were provided with a digital participant information sheet and digital consent form provided online. To register to take part in the study, participants were required to complete the consent form, at which point, a researcher from Lancaster University contacted them by phone/e-mail to provide further information about participation in the study. A participant guide was also e-mailed to participants following consent.

The number of journal entries submitted differed for each patient, based on individuals’ experiences, and covered the period from start of radiotherapy to 25 years post-treatment. No upper limit was set for time since treatment, as the study aimed to capture diverse experiential accounts of gynae-radiotherapy rather than generating temporally bounded or statistically transferable findings. Some patients who consented did not submit a journal entry. If a patient did not submit a journal entry within the first 2 months of taking part in the study, a reminder was sent. If there was no response to the reminder, the patient was removed from the study. A safeguarding check of all narratives was performed by the research team and, should a concern have been identified, the patient’s nominated clinician (provided at consent) would have been contacted. No concerns were identified.

Analysis

Consistent with the feminist and participatory ethos of the study, analysis was conducted collaboratively to ensure that multiple perspectives, including those of a patient researcher, informed interpretation. To reduce bias in analysis, all narratives were collaboratively analysed by members of the multidisciplinary research team, which included sociologists (LAA, HS, VS and MK-F), radiotherapy practitioners (DH, LS and LAA) and a patient researcher recruited from the initial methods workshop (CS). Video and audio narratives were transcribed verbatim prior to analysis.

The processes were guided by an analytical frame developed from the study aims and research questions and were used to explore the following:

Analysis combined a primarily deductive approach, directed by this framework, with flexibility to identify new or unanticipated themes emerging from the narratives. This included adopting abductive insight, in which instances that disrupted expectations or appeared surprising were actively explored to generate new insights and deepen interpretation. This hybrid approach ensured that the findings addressed the study objectives while remaining responsive to participants’ lived experiences. Initial coding categories were derived from the analytical frame, but were iteratively expanded, refined and reorganised as new patterns and meanings were identified within the data.

All transcripts were read in full by at least two team members. Coding was conducted collaboratively rather than by independent double coding of all transcripts; pairs or small groups of researchers worked together to code each transcript in detail. Throughout the analysis phase, the research team held regular meetings to compare interpretations, resolve discrepancies, refine codes and develop thematic categories. These discussions formed a process of reflexive analytical dialogue, where differences in interpretation were explored, in line with qualitative approaches that prioritise depth and meaning over inter-coder reliability metrics. This iterative process, illustrated in Figure 1, involved continual movement between coded data, the analytical frame and original narratives to preserve the richness and context of participants’ experiences.

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Figure 1.

Diagram showing analytical process.

The findings were subsequently collated into a free to access book with seven (short) sections, each led by a different member of the research team, including co-author and patient researcher (CS; The book is available to order from https://lancasteruk.estore.flywire.com/products/we-need-to-talk-aboutradiotherapy-for-gynaecological-cancer-303838). ⁶⁵ Content was developed through a collaborative writing process, including a week-long writing sprint to work together on developing the book content and generate key recommendations. This approach ensured that recommendations reflected both the research evidence and the experiential expertise within the team. The project’s steering group, comprising clinicians and researchers, reviewed the draft recommendations prior to finalisation, reinforcing the applicability of the findings for practice, policy and advocacy.

The reporting of this study conforms to the Standards for Reporting Qualitative Research checklist ensuring comprehensive and transparent qualitative research reporting. ⁶⁶

Living through treatment and its physical impacts

The narratives describe many and varied demands of treatment, including emotional, physical, and social challenges. Anxiety was common, for example, prior to hospital appointments, about the treatment itself, about getting to and from the hospital (including parking) and about family and work commitments. Many women described normalising or enduring pain and discomfort, reflecting a culture of resilience in the face of treatment. Reflecting on her treatment, one woman described feeling obliged to, ‘just get on with it’, while another rationalised her pain through comparison to experiences of pre-existing health conditions.

Many women sought support, but when they did, they reported that professionals’ used generic phrases, such as ‘it will get worse before it gets better’. These phrases or clichés did not fully address their needs or concerns nor reflect the evolving situation. Some women felt professionals selected a phrase from a ‘library’ of responses to encourage them to persevere, rather than providing person-centred, tailored support. This led some women to feel that they had not been heard.

Although the physical side effects of radiotherapy are well-documented in clinical literature, the experience of late effects often came as a shock, and women were surprised by their persistence and intensity. Changes to bladder and bowel continence, including leaks and urgency, disrupted expectations of life post-treatment and had tangible psychosocial consequences, including limitations at work, social isolation and reduced self-esteem. Many spoke about the lack of recognition for their bowel and bladder issues amongst professionals, the upset it caused to family and friends, and the embarrassment and humiliation they experienced. They planned their days to ensure they were close to toilets; carried spare underwear; panty-liners and water for washing; avoiding public transport; and feeling extremely isolated. Some women had felt obliged to return to work before they were ready, due to lack of support and understanding from employers and due to their financial situation. Some women described the difficulty of having conversations with employers after treatment, requiring repeated conversations about needs such as being near a toilet and having to discuss intimate subjects with managers multiple times because messages were not passed on or needs unaccommodated. One participant was relieved to work from home, where she could move freely and avoid a car commute.

The women’s narratives show that the consequences of cancer treatment can be permanent and impact many areas of life. This came as a shock to many of the women, as they had expected that finishing treatment and recovering would mean moving on. Most follow-up appointments end 5 years after treatment, often before late effects start. This means that late effects are rarely linked to radiotherapy, and women are treated by various separate professionals. As a result, women reported feeling as if they are each unique in their suffering and have nowhere to turn for validation.

Some radiotherapy treatments for gynaecological cancer (especially brachytherapy) can cause vaginal narrowing, while surgery can shorten vaginal length. Many women described being told to use dilators after treatment. Several women said that dilator use was explained in terms of enabling future medical examinations. They felt this clinical perspective ignored their relationship with their own body and sexual self, both physically and emotionally. Women described feeling less feminine and that their vaginas had been medicalised and problematised, and some felt embarrassed. Using the dilators was ‘far from comfortable’, sometimes painful, and that they could not use the larger dilators. Nevertheless, most used them despite discomfort and pain to maintain their sexual selves. These physical impacts often cascaded into changes in women’s identities, sexual selves and intimate relationships, which are explored in the next theme.

Shifts in identity, sexuality and intimacy

Several of the women described disruptions to identity and how treatment changed how they saw themselves. One woman described how her humorous self conflicted with the seriousness of her cancer diagnosis and how her treatment conflicted with her identity as a professional. Others described how being viewed as a ‘patient’ was disruptive. The women’s narratives showed that these disruptions can lead to feelings of guilt and anger alongside gratitude at both being able to have treatment, and to family and friends for their support.

Making sense of these conflicting emotions was not straightforward for patients or their family and friends. Many women described changes in relationships following diagnosis and treatment: Some grew stronger, while others struggled. Women reflected that family and friends sometimes found it hard to respond appropriately. While wanting to show care, their expressed concerns could have the opposite effect. For some, being able to work and having supportive managers and colleagues significantly impacted their experiences. Many women described how life continues alongside the disruptions. They often tried to hold on to some kind of normality while also experiencing chaos of treatment and life after treatment. One woman described how difficult the daily commute and work routines were and that emotional expressions of concern were disruptive for herself and others.

The women’s experiences of their sexual self during and after treatment were diverse, including not being sexually active, masturbation, relationships with others and with their own bodies, the loss of vaginal sex and development of new intimacies, and gaps in care. Many women wanted acknowledgement of their sexual selves, having found treatment ‘life changing in more ways than one’. Some women described loss of self-confidence, feeling unattractive and ‘un-sexy’. Some felt alienated from their bodies, experiencing loss of control and choice about their sexual self, resulting from diagnosis, treatment or premature menopause. For one participant, treatment induced infertility made her feel like her body did not belong to them, negatively impacting intimacy with her boyfriend and their relationship. Other women described putting their sex life on hold and sex lives being ‘switched off’ due to skin damage. However, some women found pleasure in alternatives to vaginal sex and their relationships changed in some positive ways, becoming closer through supporting each other.

Pain, and fear of pain, prevented some women from having a sexual self. For some women and their partners, thoughts of sex promoted thoughts of cancer. Many wanted a sexual self and some felt guilty for it. When they were able to have sex, some felt fulfilled. The commonly used language of ‘vaginal vault’ and ‘stump’ made some women feel alienated from their bodies and caused a sense of loss of intimacy and control over their own body. Some women reflected on the lack of communication and acknowledgement of treatment’s impact on sexual lives and sexual pleasure. Others described the lack of opportunities to talk to their clinical team about sexual well-being resulting in feelings that they did not have the right to speak about, or do anything about, their sexual selves. Women described seeking advice elsewhere, due to the perceived embarrassment of the clinical team they concluded that the medical team should not be expected to offer any guidance about sex and a sexual self, even though this had been affected by her treatment. One woman suggested the need for guides to having sex while having cancer treatment, noting most booklets focus on signs that you may have cancer, or sex after treatment. Disruptions to identity and intimacy often intersected with emotional well-being, sometimes amplifying distress or shaping coping strategies, as discussed in the next theme.

Navigating emotional and psychological well-being

Many women described fear and worry as a part of having treatment. For some women, these feelings eased, while for others they lingered for months or years after ending treatment. Women had different emotional responses to treatment and varied ways of living with the treatment in the short and long terms. Their narratives show that what is right for one person was not necessarily right for another, and what works now may not work later. Many of the women highlighted that having conversations about mental health is important, not only with health care professionals but also with family and friends. Though family and friends may struggle to fully understand, these conversations helped them feel understood and supported.

Many of the women had felt obliged to be ‘strong’ and ‘just put up with it’, which was difficult for mental health. They described feeling angry that life would never be the same again and frustration that others did not understand that the treatment being ‘over’ did not mean everything was back to normal.

Some narratives disclosed feelings of trauma, including both explicit and implicit comparisons between brachytherapy and rape or sexual trauma. The distress of the women in these narratives was clearly articulated and while these may not be universal experiences of radiotherapy, their narratives provide opportunities to reflect on how radiotherapy could become ‘trauma informed’. One woman, who had an oncology nursing background, wrote very strongly on the adaptations that could be made to brachytherapy to reduce feelings of vulnerability describing the experience of brachytherapy as being ‘impaled on a radioactive dildo’. After treatment completed, she reported feeling very emotional, tearful and shaken by her experience and that she would have welcomed a follow-up chat from staff to check on her emotional well-being. Unfortunately, she reported that staff were only concerned with treatment side effects. While awareness of brachytherapy’s potential trauma exists, knowing how to prepare and respond to these patients requires further work. How these emotional and psychological experiences were acknowledged—or overlooked—by professionals was closely tied to communication, dignity and support systems, explored in the final theme.

Communication, dignity and practices that support or undermine them

Some women expressed dissatisfaction with the consent process. Their narratives suggested that fully informed consent requires ongoing conversations that consider individual priorities, including the weight individuals may attach to different outcomes, and how that may change when considering the permanency of late effects.

The women’s narratives revealed subtle lapses in care that undermined dignity, a fundamental human right. The Radiographers’ Code of Conduct and Ethics stresses respecting individual dignity, to prevent behaviour that causes physical, emotional or psychological distress or damage to anyone. Yet, women regularly described micro-infringements of their dignity, ranging from forgetful moments, mundane practices, intentional and unintentional incidents. Such lapses are sometimes presented as inevitable or embedded into structures and routines of care. As a nurse, one participant reflected on her own experience of giving care. She talked of a lack of control after brachytherapy and said that ‘small things’ could have been done to support her. Women often presented neglect of ‘small things’ such as their warmth, comfort, adequate covering of their body, which represent micro-infringements that cumulatively impacted their sense of dignity.

Within their experience of chaos and unpredictability of treatment, women described how their bodies were managed industrially or ‘processed’. Women described feeling like they were on a conveyor belt, where service efficiency overshadowed individual experience. This industrial approach masked systemic problems, such as appointment times and transport, and hindered open discussion about issues such as dealing with treatment effects or changes in sexual well-being. Women also reported a lack of control over appointment changes or treatment delays, which threatened plans and routines and led to feelings of disrespect. Despite the challenges, women talked about activities they did to maintain some control: healthy eating, exercise, breathing, relaxation and afternoon snoozes. These well-being–promoting techniques are often recommended, and many of the women described how helpful they were.

Communication played a crucial role in experiences of dignity and control. The women’s experiences emphasised that getting the right information, at the right time, in the right way, influenced how information is processed and responded to. Many women first received NHS or Macmillan leaflets, which some found helpful, while others felt they were too general and did not meet their needs. Leaflets were sometimes given in response to questions deemed irrelevant by clinical staff, or considered to fall outside treatment appointments, leaving gaps in information that caused anxiety and a sense of being uninformed. However, an issue that spanned many narratives was how much information was the ‘right’ amount. Some thought it was better not to know, while others wished for more accurate information. Many women also felt they were not ‘taking it all in’ and potentially blamed themselves for not processing what they had been told. There was a difference between knowing about radiotherapy and acute/late effects abstractly and believing they would personally develop them.

Many women reported poor communication about concerns, harming trust between patients and practitioners. Some were told not to worry, or felt their concerns were dismissed and described an absence of empathetic and sincere communication and compassion in clinical encounters. Well-meaning loved ones and practitioners sometimes downplayed worries with phrases like ‘be brave’ or ‘grin and bear it’. These phrases, though well-meaning, could stifle communication and dismiss significant feelings and experiences. One women suspected she had insufficiency fractures, but these were initially dismissed as these were not visible on an X-ray. She also described suffering bladder and bowel inflammation and incontinence, her consultant responded dismissively, ‘You can always wear incontinence pads, can’t you? Well, you’ve had radiotherapy, what do you expect?’ Such dismissals undermined trust and confidence in clinical teams. Overall, these narratives highlight that dignity, control and effective communication are closely connected. Structural pressures and routine care practices sometimes challenged women’s autonomy and sense of self, but women’s strategies to maintain control demonstrate their resilience and the importance of person-centred, empathetic communication.

From findings to action

The accounts point to systemic gaps in communication, respect and recognition of patients’ lived realities. Responding to them demands clear, patient-driven commitments. Drawing directly from participants’ accounts, these commitments were distilled into the ‘Manifesto for Change’, printed on the back cover of the project book. The manifesto sets out practical, value-based demands to guide radiotherapy services and ensure the best possible experience for all.

Reflexivity and researcher positionality

The study was informed by a feminist epistemological approach that recognises knowledge as situated and shaped by researchers’ social, professional and embodied positions. Several members of the team had personal or professional experience of cancer care. The patient researcher (CS), who had lived experience of gynaecological cancer and radiotherapy, contributed throughout the study, including the co-design workshop, development of study materials, data interpretation and refinement of themes. Her experiential knowledge was central in ensuring that the analysis remained grounded in patient priorities and in identifying issues that may otherwise have been overlooked, particularly around late effects, sexuality and everyday impacts of treatment.

Clinical members of the team reflected on how engagement with the narratives challenged taken-for-granted practices within radiotherapy, including the use of standardised language, time-pressured interactions and limited discussion of sexual well-being. This prompted critical reflection on their own professional roles and assumptions, particularly where care practices may unintentionally silence or minimise patient experiences.

Researchers from social science backgrounds brought a feminist and critical lens to the analysis, attending to issues of power, voice and the marginalisation of embodied knowledge within biomedical contexts. For some team members, personal experiences of cancer (albeit different diagnoses) shaped empathetic engagement with the data, while also requiring reflexive awareness to avoid over-identification with participants’ accounts.

Reflexivity was embedded throughout the analytic process via collaborative coding, regular team discussions and the inclusion of a patient researcher in interpretive decision-making. This iterative approach enabled the team to critically examine how their perspectives shaped data interpretation, while prioritising participants’ narratives as the primary source of insight. Each member of the research team wrote a personal reflection which was included in the co-authored book. ⁶⁵

Strengths

This study offers one of the most detailed qualitative examinations of the social, personal and sexual impacts of gynaecological radiotherapy to date. Using a feminist methodological approach, the research was co-produced with stakeholders, including patients, patient representatives and members of a project steering group, ensuring that the voices of those most affected shaped every stage. Collaboration with clinical teams ensured that the insights generated were not only authentic to lived experience but also directly translatable into actionable changes in practice. This integration of experiential expertise, clinical knowledge and feminist critique produced findings that go beyond description, providing a foundation for activist research that demands transformation in policies, practices and systems that affect patient well-being, principles that underpin the manifesto for change.

Limitations

The lack of demographic diversity is a clear limitation. Despite targeted outreach through charities specialising in LGBTQI+ cancer experience, all participants identified as white, heterosexual women. Perspectives from sexual minorities, non-binary individuals, ethnically diverse groups and those with varied socio-economic, disability and age profiles are therefore absent. This demographic homogeneity is reflected in the limited discussion of sexual pleasure beyond heterosexual experiences, producing silences that are important to acknowledge. Such silences reflect broader politics of research exclusion, connected to the silencing of traumatic or shameful experiences, compounded by intersecting exclusions via ableism, racism and cis-heteronormativity.^76–79

Recruitment was further constrained by the COVID-19 pandemic, which limited face-to-face recruitment opportunities but also intensified barriers for underrepresented groups, many of whom faced heightened health vulnerabilities, digital exclusion and competing priorities during this period. These factors compounded existing systemic challenges in engaging marginalised populations within health research.

Participants in the online study self-selected by contacting the research team, which may mean those with more significant issues were more motivated to participate, potentially shaping the emphasis and intensity of experiences reported. Shifting the study design due to the impacts of COVID-19 enabled more insight into longer term effects of treatment and revealed experiences as remembered by participants. However, the original aim of the research, to gather contemporaneous accounts, was not realised in accounts submitted as part of the second study. The temporal heterogeneity adds strength to the data set showing how participants reflect on their experiences of treatment. Their recall of treatment provides important considerations for consent and experiences of care. In the context of this study, how people look back on treatment became more important than how accurate their retelling of care was. We did not specifically examine whether time since treatment influenced the nature or frequency of concerns raised, as the study was not designed or powered to make such comparisons. While some participants reflected on changes in their experiences over time, these were not analysed systematically.

Narratives were submitted in multiple formats (written, audio and video), which may have influenced the depth, style and content of accounts, although all were transcribed and analysed consistently. The use of multiple data collection modalities supported more inclusive participation and enabled participants to express their experiences in ways that suited them.

Future research should adopt more proactive, culturally sensitive and community-engaged recruitment strategies, including building trusted partnerships with diverse communities and leveraging multiple outreach modalities.