“I didn’t figure you were the sort of person who would get anal cancer”. A qualitative study of women’s insights into the challenges of a rare cancer.

“I didn’t figure you were the sort of person who would get anal cancer”. 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A qualitative study of women’s insights into the challenges of a rare cancer. Mary Hayes, Claudia Rutherford, Richard John Hillman, Kate White This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8622623/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 4 You are reading this latest preprint version Abstract Background Squamous cell carcinoma of the anus is the most common form of anal cancer, predominantly caused by specific genotypes of human papillomavirus (HPV). HPV is the most common sexually transmitted infection worldwide, yet understanding among the public remains limited. Although anal cancer disproportionately affects women, little is known about their experience. This study explored the effects of anal cancer treatment on women. Methods This qualitative study, guided by hermeneutical inquiry, recruited participants from a large tertiary referral hospital. Eligible individuals were those assigned female at birth who had undergone chemotherapy and radiotherapy with curative intent for anal cancer. Data were collected using semi-structured interviews to gain a deep understanding of women’s experiences. Reflexive thematic analysis was used to analyse the findings. Findings Fifteen women aged between 45 and 72 participated in interviews to share their experiences. Study findings highlighted the complex experiences of women diagnosed with and treated for anal cancer. Analysis identified three main themes that reflected women’s experience: 1. Delayed recognition of a rare cancer- “It’s not haemorrhoids… you have cancer.” 2. Too ashamed to share- “I literally walked away from my job. I couldn’t bear to tell anyone what cancer I had.” 3. A diagnosis of anal cancer has a ripple effect on all aspects of a woman’s life. Women shared in-depth descriptions of the lasting physical, psychological and social effects that they experienced from symptom onset through to survivorship. A lack of information and the absence of dedicated specialist services were frequently identified as key contributors to women’s experiences. Conclusions This study offers valuable insights into women’s experiences of anal cancer, with stigma and shame commonly identified as barriers to timely diagnosis and comprehensive care. Addressing misconceptions and improving public and professional awareness are essential in reducing disease-associated stigma and facilitating more timely and effective care. The recent introduction of anal cancer screening guidelines for people living with HIV in Australia presents a timely opportunity to enhance care for this underserved patient group. Anal cancer Anal cancer treatment Women’s health Qualitative research Introduction The incidence of anal cancer in women has been gradually increasing over the last four decades with women accounting for over 60% of cases reported in Australia in 2021 ( 1 ). Squamous cell carcinoma (SCC) accounts for 75–95% of these cases, adenocarcinomas account for 5–15% of cases, and very rare histologies including melanoma and adenocarcinomas account for the remaining cases ( 2 ). Over 90% of anal cancers diagnosed worldwide are associated with the human papillomavirus (HPV), an infection that is spread through intimate contact with genital skin ( 3 ). Specific populations considered most at risk of developing anal cancer include men who have sex with men, people living with HIV (PLWHIV), individuals who are immunocompromised (such as solid organ transplant recipients), and those with a history of pre-cancerous lesions of the ano-genital region ( 4 ). Persistent misconceptions and limited public awareness of HPV have resulted in HPV-related cancers, including anal cancer, being recognized as a highly stigmatized condition. This is particularly true for women ( 5 , 6 ). HPV is recognized as the most common sexually transmitted infection worldwide, with 75% of sexually active individuals between the ages of 18 and 30 becoming infected with HPV at some stage ( 7 ). The World Health Organisation estimates that women are up to ten times more likely to contract HPV-related cancers including cervical, oropharyngeal, and anal cancer ( 8 ). Among over 200 genotypes of HPV identified to date, HPV 16 causes 90% of anal cancers attributable to HPV ( 9 , 10 ) The prophylactic HPV vaccine has been available since 2007 but is evidenced to be most effective when administered around or after sexual debut. Given that women are typically over the age of 50 when diagnosed, the benefits of this prophylactic vaccine will not be realised for several decades ( 11 ). Limited research has shown that symptomatic individuals typically wait an average 7.4 months from time of symptom onset to diagnosis, with only 54% undergoing a rectal examination at first visit to a medical practitioner ( 4 , 12 ). A retrospective review from University Hospitals Cleveland found that individuals diagnosed within six weeks of presentation had the highest rates of treatment completion and highest rates of complete response compared with those who waited longer than 6 weeks for a diagnosis ( 13 ). Bingmer and colleagues also noted that over half of participants were initially misdiagnosed with a benign anorectal condition, and nearly a quarter of patients were symptomatic for at least six months prior to diagnosis. The influence of feelings of stigma and shame on individuals’ health seeking behaviours is well recognized. Conversely, the stigma associated with healthcare professionals’ conducting clinical practices such as rectal examinations warrants more critical attention ( 14 , 15 ). Studies have examined women’s experience through the lens of quality of life (QOL) measures. Bowel, bladder, and sexual function are known to be negatively impacted by anal cancer treatment, women also reporting worse nausea, fatigue and insomnia compared to healthy controls ( 16 ). However, the use of generic QOL assessment tools that lack gender- and tumour-specificity in predominantly cross-sectional studies limits understanding and insight into the severity and extent of side effects experienced by women, specifically ( 17 ). This is compounded by a paucity of qualitative evidence that seeks to understand women’s experiences of anal cancer treatment specifically, with existing descriptive accounts arising incidentally from broader QOL studies that often include both men and women with a range of different cancers ( 18 , 19 ). In this qualitative study, we therefore aimed to explore women’s experience of receiving an anal cancer diagnosis and the effects of treatment on their lives in the weeks and months following. We sought to capture the nuanced and individualized nature of each woman’s experience, acknowledging their unique circumstances and the broader context of their healthcare journey. Methods Study Design This study was guided by hermeneutical inquiry, a qualitative research approach grounded in the philosophy of interpretation and understanding, where meaning is constructed through dialogue between the inquirer and participants, and their reflections of their experience ( 20 , 21 ). The research question guiding this study was ‘what are women’s lived experiences of being diagnosed with, and treated for, anal cancer?’ This study was approved by the Human Research Ethics Committee at the primary recruiting hospital before the study commenced (2023/ETH00146). Study Site This study was conducted at a large tertiary referral hospital with a specialist service dedicated to dysplasia and anal cancer, although participation was not limited to recipients of care there. Referrals were accepted from healthcare professionals working at other hospitals and cancer centres, provided the individual consented to being contacted. To ensure rigor and transparency throughout the study, we adhered to the Consolidated Criteria for Reporting Qualitative Research ( 22 ). Study Participants Fifteen women who were treated with chemotherapy and radiotherapy for anal cancer were eligible to participate in the study. Participant characteristics are outlined in Table 1. Women were between nine months and 19 years post-treatment completion. Eight interviews were conducted in person and seven were conducted online. Table 1 Participant demographics Variable Number of participants Age 45–54 4 55–64 5 65+ 6 Ethnicity Caucasian 12 Asian/Pacific Islander 3 Year of treatment Prior to 2016 1 2016–2019 2 2020–2022 9 2023- onwards 3 Distance from home to treating hospital 50 km 6 Participant Recruitment and Consent Procedure Two approaches were undertaken to recruit participants to the study: 1. Specialist oncology services Clinicians provided potential participants with an information sheet and obtained verbal consent to share their contact details with the study coordinator. The coordinator then contacted each individual, screened for eligibility, and explained the study in detail. Those who met the study criteria and agreed to participate provided written informed consent. 2. Snowball sampling strategy Existing participants or healthcare professionals referred other potentially eligible individuals to the study coordinator. Upon referral, the lead researcher screened the individual, provided detailed study information, and obtained written informed consent from those who chose to participate. Data Collection Semi-structured interviews were conducted between April 2023 and April 2024 by the lead author, who had received training in qualitative research methods and interview techniques. Their reflexive role in data collection is acknowledged and addressed throughout the study, aligning with the epistemological stance that lived experiences are subjective and that data is co-constructed through interactions between the participant and the interviewer. An interview guide [Appendix 1] informed by a recent systematic review ( 23 ) was developed by the team and piloted extensively prior to the commencement of recruitment. The guide was designed to be reviewed and revised iteratively as interviews progressed. Adjustments were made following team discussion based on preliminary findings from the first three interviews. Interviews were offered both using a secure virtual platform and in-person at the cancer centre, at a time of the participant’s choosing. The researcher used verbal cues to ensure consent was upheld throughout the interview. With explicit consent, all interviews were audio-recorded and transcribed using a professional transcription service. The lead author verified the transcripts before analysis commenced. The interviewer recorded field notes and observations such as body language in a study journal. Data saturation was agreed by the study team when similar experiences were presented without any new relevant information. Data Analysis Reflexive thematic analysis (RTA) offers a theoretically flexible approach to qualitative data, encouraging innovation, imagination and variability with an emphasis on reflexivity and active participation in theme generation and theme building ( 24 ). We followed Braun and Clarke’s six-step guide to analysis, iteratively moving through the recommended steps using NVivo software, whiteboards and virtual mapping platform, Miro, to identify codes and develop themes. We used an inductive analytic approach, eliminating the need to develop codebooks and templates. Coding was an iterative process, conducted independently by two reviewers. Codes and categories were shared and discussed as a group on several occasions to optimise theme development and coherence. Findings are reported in concordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist ( 22 ). Findings Themes generated during RTA illustrate the complex and multifaceted nature of women’s experiences of anal cancer. Themes are organised around three key concepts: diagnostic delays, feelings of stigma and shame, and the profound, lasting impact of anal cancer on many aspects of a woman’s life. Pseudonyms are used throughout this paper to protect participants’ identities, and italicised text indicates participants’ own words. Delayed recognition of a rare cancer- “It’s not haemorrhoids... you have cancer” All bar one of the women experienced a significant delay obtaining an anal cancer diagnosis. The women described a similar path of presenting to their GP on multiple occasions with per rectum (PR) bleeding. They described having their concerns dismissed, being told it was most likely haemorrhoids, despite not undergoing a physical examination. For these women, delays meant enduring difficult protracted periods of discomfort due to unresolved symptoms, such as bleeding, which Olive described ‘ became messy and difficult to manage’ . All of the women described a diagnosis of anal cancer as unsettling, a cancer of which they had little or no knowledge. Kelly described herself and her partner as ‘ babes in the wood ’, oblivious to the challenges that lay ahead of them. These feelings were compounded when members of the healthcare team also had limited or no knowledge of anal cancer. This lack of knowledge and awareness among the healthcare team had negative consequences on many aspects of the women’s experience, as expanded on below. “To have cancer was a shock but to have that particular type of cancer… that was even more of a shock. I said to the gastroenterologist, I cannot fathom it… it’s still hard to accept. Even now.” - Maureen For most women, receiving a diagnosis of anal cancer was a deeply shocking experience as the disease was both ‘ confronting and unfamiliar’ . Maureen shared how she ‘ didn’t know anal cancer existed’. Most of the women reported having limited or no prior knowledge that women were at risk of developing anal cancer, leading them to experience feelings of confusion, uncertainty, and a heightened sense of vulnerability. Several of the women elected to keep their diagnosis of anal cancer private to avoid questions from friends and family which they would not be able to address. Two chose to identify they had bowel cancer. Kelly explained how she reflected on past behaviours in an attempt to understand what might have led to their diagnosis and make sense of the situation. “When he told me... you’ve got anal cancer, squamous cell carcinoma... all I could think of was... hang on, I’ve never showed my butt to the sun... I don’t understand” - Kelly Women described a lack of knowledge and awareness among healthcare teams prior to and at the time of diagnosis. Their presenting symptoms were not initially linked to anal cancer and healthcare professionals did not consider it as a potential diagnosis. Most of the women, like Sally, explained how the GP ‘ didn’t even do a physical exam’ , but was satisfied that she had haemorrhoids and advised over-the-counter topical medication. In reflecting on their experience and the knowledge gained throughout their diagnosis, the majority of women recognised that healthcare professionals had assessed them through a narrow lens of risk. As a result, their symptoms were often overlooked or misinterpreted, delaying appropriate investigations. Olive’s experience, outlined below, highlights the misconceptions held by her healthcare teams when considering what populations are at risk of developing this cancer. “... so he [specialist] said I’ve never seen anal cancer and I didn’t figure you were the sort of person who would get anal cancer” - Olive Olive described feeling angry and belittled by this remark as it was passed by the same practitioner who did not conduct a rectal examination and who missed the diagnosis during colonoscopy. The weight of the phrase ‘ sort of person’ was evident as Olive reiterated these words several times during the interview. Women in this study described a complicated diagnostic trajectory marked by multiple appointments on account of persistent and distressing symptoms . The majority of women expressed frustration at having to repeatedly re-present to healthcare settings and be dismissed on several occasions. They described having to repeatedly present for medical attention, navigating feelings of self-doubt and shame, to have their concerns taken seriously. “… I knew something wasn’t right even though the blood test said there was nothing wrong. I just thought no… and I kept going back, kept going back. I must have gone back there four times…” - Roz The women’s experience extended beyond initial dismissal. For example, Roz went on to describe how a GP told her, ‘I actually just think you have given yourself an ulcer worrying that there is something wrong with you’. Undeterred by these comments or the unremarkable blood results, Roz later reflected on how proud she was of herself for trusting her body, ‘ because things could have been so much worse’ had she not been persistent. Barriers were reportedly more challenging for women from rural and regional settings where referrals were often managed by a single practitioner in a community hospital. Kathleen, a rurally based participant, complained of itching and bleeding but was refused a colonoscopy on two occasions with the rationale that ‘ there was nothing wrong with you three years ago’. She was eventually referred to another hospital, almost two hours away, where she was comprehensively assessed and underwent a colonoscopy. Too ashamed to share- “I literally walked away from my job. I couldn’t bear to tell anyone what cancer I had.” Thirteen of fifteen participants described their diagnosis of anal cancer as ‘ confronting ’ or ‘ dirty ’ and feared they would be considered promiscuous by their friends and family. Liz believed the misconception that anal cancer was a ‘ gay man’s disease ’ to be true and was too ashamed to seek clarification. All women felt that their overall experience was largely attributed by the interactions they had with healthcare professionals on the pathway to diagnosis. The majority of women described how feelings of embarrassment, stigma and shame were not validated by healthcare professionals and how their attitudes reinforced negative feelings, making it more challenging for them to seek help or feel heard. “I think it was a bit of… self-inflicted stigma, because I was a bit reluctant to even tell people that I have anal cancer because I thought they would probably look at me like I am this promiscuous person who’s been out and about… It was really weird to communicate my diagnosis. It’s definitely different to say I’ve got breast or ovarian cancer than saying I’ve got anal cancer.” - Sally The majority of women described the varying degrees to which ‘ disease-associated stigma shaped their overall experience of anal cancer’ and the isolating effectit had on them in the months and years that followed. One exception was Roz, who described how she didn’t ‘ feel ashamed, didn’t feel dirty... none of that’. However, most women, like Sally (outlined above), found stigma impossible to avoid and reported how these feelings, compounded by the taboo nature of anal cancer, contributed to a strong sense of self-blame. Jude said, ‘ I just described it as ‘cancer of my plumbing’ and I didn’t say any more than that’, minimizing details for fear of judgement and discrimination. Jane’ reflection below illustrates the emotional burden of shame and the tension that is created between knowing and feeling. “It’s mortifying for me. I don’t want to tell somebody I’ve had anal cancer. There should be no shame about it but there is... people do not want to talk about anything to do with that area” -Jane Insights from the women highlight how internalized feelings of guilt and shame were intensified by perceived attitudes from healthcare professionals. Sally reflected on feeling like she ‘ had a bit of explaining to do’ as she did not see herself as fitting the perceived risk profiles for anal cancer. Jane described several occasions where subtle cues like body language and lack of eye contact led her to believe that she was being judged or perceived as engaging in socially deviant behaviours. “I felt that all the people that I dealt with throughout my treatment judged me and they were embarrassed and didn’t want to look me in the eye” -Jane Olive described ‘ walking away’ from her job because she ‘ couldn’t bear to tell anyone’ what cancer she had, feeling ‘ completely overwhelmed’ by the emotional toll of her diagnosis and the stigma associated with it. She even expressed how she ‘ desperately wanted to have breast cancer’ so that she could share her diagnosis more openly and seek support from close friends and family. For about a third of the women who were referred to a dedicated specialist service, their experience with the healthcare team and the care that they received was overwhelmingly positive. In contrast to previous clinical encounters, Maureen described the specialist team as empathetic and attentive to the emotional impact of their diagnosis and treatment, ‘ epitomising true care’ . She went on to describe feeling recognised as an individual, rather than being reduced to her condition, which meant she was better able to absorb complex and relevant information related to her follow-up care. However, frustrations were shared about the timing of specialist involvement. Lily felt that ‘ waiting three months after treatment to see [specialist] to talk about everything was unreasonable’, considering adverse effects had already manifested by this time. The ripple effect on all aspects of a woman’s life The majority of women described their experience as ‘ life-changing’ with many areas of their life and livelihood profoundly impacted directly and indirectly by treatment-related consequences. Six participants who lived regionally and rurally had to temporarily relocate for the duration of their treatment to be closer to treatment facilities. Kelly emphasized that the two weeks after treatment finished were ‘ worse than the worst time’, intensified by being back home and far from the support of the cancer centre . She described her distress, ‘ sobbing into the phone to the nurses saying DO something’ but felt that the COVID-19 pandemic dissuaded her healthcare teams from admitting her to hospital for full assessment and management of her symptoms. All bar two women commented on the lack of ‘medical support’ available to them and the lack of knowledge among healthcare professionals regarding supportive care services that women could avail of once treatment had finished. “There were definitely times when I would have… if there had been a little green pill and they had said take this pill and that’s the end… you’re gone, you’re dead… I would have taken it. No problem. No question. It was so, so bad.” - Kelly Of the six women who did not live close to any treatment facility, all felt inconvenienced by having to travel to metropolitan areas .Temporarily relocating to someplace unfamiliar without their family or friends nearby placed considerable physical and emotional strain on themselves and their wider support networks. Maureen moved interstate for seven weeks, staying with a friend for the entire time and walking to treatment appointments for as long as she was physically able. Kathleen stayed in hospital accommodation for over six weeks where she described several challenges like having to share a bathroom and other amenities with strangers. Kelly, who previously described herself and her partner as ‘ babes in the wood’, had to quickly rethink their plans when the challenges of navigating treatment alone, compounded by the strain of being away from home and staying in a hotel, became increasingly difficult and isolating. “I thought, it’s only radiation, how bad can it be… I’ll just come down to [city] and go back home on the weekends… but then we realised quite quickly that this isn’t as easy as we thought it was going to be so [partner] came and stayed and saw me through the last weeks” - Kelly All bar one woman described how the lasting consequences of treatment disrupted established and perceived roles within family networks and workplace environments, resulting in significant lifestyle changes. As well as Olive, Annie also left her job because the ‘ commute was too far without a toilet’ . Below, Kaye describes the significant and permanent lifestyle changes following her anal cancer diagnosis, noting a rapid and unexpected shift in her role from business owner to patient to carer within months. “So I went from running this huge business working 70 hours a week to then go off and start chemotherapy and radiotherapy for anal cancer and then caring for my husband through his cancer journey...” -Kaye The impacts described by women were intensified by the lack of supportive care services available during and following treatment completion. Rosemary explained how ‘y our whole mind is obsessed with cancer’ but you must ‘ suck it up and get on with it’ . Jane felt ‘ extremely unsupported’, emphasising that ‘ everything’ could be done better, ‘ given that there was really no support’. Lily described how she longed to talk to ‘ somebody who’s been through it [anal cancer]’ to get a clear understanding of what to expect and how to prepare but was not referred to any group. Sally described the benefits she received from joining ‘ cancer rehab classes’ which were exercise-based classes exclusively available to women who had lived experience of cancer. However, she lamented the fact that she wasn’t informed about these services by her treating team and she empathised with women living in regional or remote areas who ‘ had no hope’ of accessing any services like these. Discussion This study provides the first in-depth description of women’s unique and individual experiences of anal cancer to date. The women’s experiences, and the impact this had on many aspects of their lives, were readily recalled and laden with emotion. The women explained how their pathways to diagnoses highlighted significant gaps and a lack of awareness about anal cancer among practitioners in the primary care setting. Gaps were also identified within hospital settings and cancer centres, where anal cancer is uncommonly diagnosed and treated. Participants described multiple interactions with various care team members that revealed prevalent misconceptions about women’s risk of anal cancer among healthcare professionals and the public. Arguably, more concerning was the tendency of primary care providers to rely on clinical pathology rather than conduct a physical examination, which often delayed diagnosis until symptoms had significantly worsened. Each of the women described having to present on multiple occasions, advocating for themselves as symptoms escalated to obtain a specialist referral and eventually reach a diagnosis. These ongoing exchanges caused prolonged uncertainty for women, many of whom were already anxious and ashamed about their presenting symptoms. Such instances left women feeling unheard, dismissed, and ignored, a phenomenon gaining attention within medical journals in recent times ( 25 ). As outlined above, women’s experiences were made significantly worse by the fact that anal cancer is rare. It is widely evidenced that, as a result of less scientific consideration and funding, individuals with rare cancers face distinct challenges including misdiagnosis, delayed diagnosis, limited access to specialised clinical expertise and appropriate treatments, and uncertainty in clinical decision making ( 26 ). Even within charities and organisations dedicated to rare and uncommon cancers, awareness about specialist services is lacking, with Rare Cancers Australia failing to include the only dedicated anal cancer specialist service in New South Wales on their web page ( 27 ). The International Anal Neoplasia Society (IANS), are paving the way for clinical practice change by raising awareness of anal cancer through developing screening guidelines for high-risk groups ( 28 ) and offering specialist courses to upskill practitioners in the practice of high resolution anoscopy (HRA), the gold standard intervention for detecting anal squamous cell carcinoma precursors and very early cancers ( 29 ). Despite these advances and keeping in mind the limitations associated with accessing specialist services dedicated to anal cancer, our findings serve as a timely reminder of the persistent gap in translating research and clinical practice guidelines from specialist organisations into everyday practice within cancer and primary care settings. Since over 60% of anal cancer cases occur in women ( 1 ), more needs to be done in the primary care setting to highlight their risk profile. Reflective of existing literature, many study participants had never heard of anal cancer, despite a consistent increase in the number of cases over the last four decades, and knew little, if anything, about anal cancer treatment ( 1 , 30 ). Similar lack of knowledge and awareness has been observed among PLWHIV where there is significant discord between actual and perceived risk ( 31 ). These gaps highlights a critical opportunity to leverage the unique position of specialist primary care providers in increasing awareness around anal cancer and HPV as a causative factor and addressing misconceptions. Integrative approaches between specialist and primary care settings have proven effective in reducing stigma in the mental health setting ( 32 ) and could be adapted to support the successful implementation of anal cancer screening guidelines. Gynaecologists who see women with a history of vulvo-vaginal and cervical malignancies, and have around a ten-fold increased risk of developing anal cancer, are also well placed to raise awareness about the symptoms and risk factors associated with the disease. Stigma remains a major barrier. The perceived linkage between anal cancer and anal sex, coupled with broader taboos around genitalia and sexuality, continues to hinder targeted health promotion campaigns ( 19 ). Yet, these barriers are not insurmountable. Public discourse around sexuality and sexual behaviours once shaped attitudes towards cervical cancer and screening ( 33 ) but the benefits of successful screening programs all around the world are now being realised, with many countries, including Australia, now moving towards eliminating cervical cancer ( 34 ). While a national screening program for anal cancer is yet to be established, insights and learnings from national cervical cancer screening programs worldwide offer valuable insights for tackling stigma and improving early detection. Although this progress in the public health space is promising, systemic clinician behaviours and attitudes prevalent in women’s health must be addressed. In this study, the shortcomings of the healthcare teams often manifested in harmful remarks towards the women. When Roz was told to stop worrying or ‘ she would give herself an ulcer’ , the responsibility for the situation was shifted onto her, effectively labelling her as the problem. Growing literature around the dismissal of women’s concerns in healthcare settings suggests that a lack of time, knowledge and shared decision making has contributed to women feeling unheard and dismissed, and that care recipients are perceived to have unrealistic expectations of treatment by their healthcare teams ( 35 ). The title of this paper reflects how women were made to feel as though they did not belong to this diagnosis, a sentiment shaped by the language and tone used by clinicians that left a lasting emotional impact. Medical misogyny, a well-documented phenomenon in both clinical literature and mainstream media, may underpin some of these interactions. Gendered biases, shown to contribute to diagnostic delays, dismissive care, and a lack of sensitivity in communication ( 36 ), coupled with the challenges associated with rare cancers, creates a particularly challenging environment for women with anal cancer. Encouragingly, of the minority of women in our study who were followed up in a specialist setting, all described how the normalisation of anal cancer care by their clinicians helped to alleviate feelings of stigma and shame. However, the broader issue of inclusion remains. Minimal consideration of trans, non-binary and gender diverse individuals as well as individuals from ethnic backgrounds in clinical research continues to perpetuate inequity and reinforce stigma ( 37 ), particularly in conditions like anal cancer, where gendered assumptions and social taboos already complicate diagnosis, treatment, and support. Recommendations Anal cancer is on the rise, especially in women. Integrating public health messaging into existing health programs such as bowel cancer screening programs, workplace health programs, and retirement planning, may help to increase awareness and early detection of anal cancer. Public health campaigns may need to leverage the support of peak cancer bodies such as Cancer Council Australia and the Cancer Society of New Zealand to optimise reach and ensure cultural appropriateness across diverse populations. Targeted education and communication training programs may avoid diagnostic delays and help healthcare professionals to develop the necessary skills to address sensitive topics such as the sexual transmission of HPV and causative factors associated with anal cancer that are perceived as taboo. Looking ahead, greater investment in rare cancer research must be prioritised to improve diagnosis, treatment, and support for underrepresented groups. Future research should disaggregate data based on sex and gender and include trans, non-binary and gender diverse individuals who are not represented in this study sample despite best efforts. Efforts must also be made to enhance inclusivity of First Nations individuals and those from culturally and linguistically diverse backgrounds. Studies exploring the impact of gender bias and medical misogyny on cancer care are needed to uncover persistent gaps in clinical practice and literature. Limitations Online interviews posed some challenges including technical issues, disjointed conversations, and potentially missed visual clues such as body language. However, remote participation may have encouraged greater openness among participants compared to in-person interviews. Although reflective of a realistic recruitment challenge given the rarity of anal cancer, the absence of gender-diverse and culturally and linguistically diverse participants is a limitation in this study. The reflexivity of the interviewer and research team as co-constructors of the data must be considered when interpreting the results. The subjectivity inherent in this analysis is characteristic of qualitative research. Were the interviews to be repeated in a different context, with a different interviewer, it is unlikely that the same data would be collected, although commonalities would remain. Conclusion Findings from this in-depth qualitative study illustrate the unique and complex experiences of women undergoing treatment for anal cancer. Contextual factors such as stigma and shame significantly influenced referral and treatment pathways, which led to delayed diagnoses and intensified emotional burden. Limited knowledge among healthcare teams across both acute and primary care settings further compounded this burden and led to substantial delays in initiating treatment. The recent introduction of anal cancer screening guidelines is a timely opportunity for healthcare settings across Australia and worldwide to increase awareness of anal cancer as a disease and implement targeted education. Declarations Ethics approval was obtained from the primary recruiting hospital as listed in the text. All authors and study participants consent to the publication of this paper. The datasets generated and analysed during the study are not publicly available due to the sensitive nature of information collected. The corresponding author can be contacted with any data queries. The authors declare no competing interests related to this publication. Funding This study was generously funded by St. Vincent’s Clinic Research Foundation and St. Vincent’s Curran Foundation. The authors would like to acknowledge and thank all study participants who took time to participate in an interview, as well as healthcare colleagues and cancer patient support groups who helped with recruitment to the study. We also acknowledge and thank Natalie D’Abrew for her support with data analysis. Author Contribution All authors contributed to the study design. MH and RJH facilitated study recruitment and data collection. MH and KW led data analysis and interpretation of findings. All authors contributed to writing the manuscript and have reviewed the final version. Acknowledgement We thank all our study participants who took time to participate in an interview, as well as staff specialists, specialist clinic staff and cancer patient support groups who helped with recruitment to the study. We also acknowledge and thank Natalie D’Abrew for her support with data analysis. Data Availability The datasets generated and analysed during the study are not publicly available due to the sensitive nature of information collected. The corresponding author can be contacted with any data queries. References Australian Institute of Health and Welfare. Australian Cancer Incidence and Mortality (ACIM) books: Anal cancer. Canberra; 2021. Pedersen ESL, Verschoor D, Segelov E. Incidence and burden of anal cancer—time to fight the growing disparities. 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Anal cancer is on the rise; it’s a shame … Australian Journal for General Practitioners. 2016;45:252–3. Lum C, Hans P, Amy B, Marissa L, and Segelov E. A 2020 update of anal cancer: the increasing problem in women and expanding treatment landscape. Expert Review of Gastroenterology & Hepatology. 2020;14(8):665–80. Sterner A, Derwinger K, Staff C, Nilsson H, Angenete E. Quality of life in patients treated for anal carcinoma-a systematic literature review. International Journal of Colorectal Disease. 2019;34(9):1517–28. Sodergren SC, Gilbert A, Darlington AS, Vassiliou V. Anal Cancer: Putting Health-Related Quality of Life at the Forefront. Clinical Oncology. 2019;31(2):69–71. Oggesen BT, Hamberg MLS, Thomsen T, Rosenberg J. Exploring Patients' Perspectives on Late Complications after Colorectal and Anal Cancer Treatment: A Qualitative Study. Curr Oncol. 2023;30(8):7532–41. van Dongen J, de Heus E, Eickholt L, Schrieks M, Zantingh I, Brouwer OR, et al. Challenges and controversies patients and (health care) professionals experience in managing vaginal, vulvar, penile or anal cancer: The SILENCE study. European journal of cancer care. 2022;31(6):e13676. Riessman CK. Narrative methods for the human sciences: Sage; 2008. Guba EG, Lincoln YS. Paradigmatic Controversies, Contradictions, and Emerging Confluences. The Sage handbook of qualitative research, 3rd ed. Thousand Oaks, CA: Sage Publications Ltd; 2005. p. 191–215. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 2007;19(6):349–57. Hayes M, White K, Hillman RJ, Rutherford C. The impact of anal cancer treatment on female sexuality and intimacy: a systematic review. Support Care Cancer. 2025;33(9):788. Braun V, Clarke V, Hayfield N, Davey L, Jenkinson E. Doing Reflexive Thematic Analysis. In: Bager-Charleson S, McBeath A, editors. Supporting Research in Counselling and Psychotherapy: Qualitative, Quantitative, and Mixed Methods Research. Cham: Springer International Publishing; 2022. p. 19–38. McNiven A, Dobson A, Read K, Dixon S. 'My patients are" gunning for a fight" that I don't want': reflecting on feeling dismissed and conflict-expectant consultations. British Journal of General Practice. 2025;75(754). Pillai RK, Jayasree K. Rare cancers: Challenges & issues. Indian Journal of Medical Research. 2017;145(1):17–27. Rare Cancers Australia. Anal Cancer https:// [Available from: https://www.rarecancers.org.au/knowledgebase/cancer-types/anal-cancer/ . Stier EA, Clarke MA, Deshmukh AA, Wentzensen N, Liu Y, Poynten IM, et al. International Anal Neoplasia Society's consensus guidelines for anal cancer screening. International Journal of Cancer. 2024;154(10):1694–702. Mascarenhas Saraiva M, Spindler L, Fathallah N, Beaussier H, Mamma C, Ribeiro T, et al. Deep Learning in High-Resolution Anoscopy: Assessing the Impact of Staining and Therapeutic Manipulation on Automated Detection of Anal Cancer Precursors. Clin Transl Gastroenterol. 2024;15(4):e00681. Chaballout BH, Chang EM, Shaverdian N, Lee PP, Beron PJ, Steinberg ML, et al. The Patient's perspective on radiation therapy for anal cancer: Evaluation of expectations and stigma. Cancer Rep (Hoboken). 2023;6(12):e1908. Cruz G, Ramos-Cartagena JM, Torres-Russe JL, Colón-López V, Ortiz-Ortiz KJ, Pericchi L, et al. Barriers and facilitators to anal cancer screening among people living with HIV in Puerto Rico. BMC Public Health. 2023;23(1):1940. Kohrt BA, Jordans MJ, Turner EL, Rai S, Gurung D, Dhakal M, et al. Collaboration with people with lived experience of mental illness to reduce stigma and improve primary care services: a pilot cluster randomized clinical trial. JAMA network open. 2021;4(11):e2131475-e. Braun V, Gavey N. “Bad girls” And “Good girls”? sexuality and cervical cancer. Women's Studies International Forum. 1999;22(2):203–13. Brotherton J MD, Smith M et al. 2024 Cervical Cancer Elimination Progress Report: Australia’s progress towards the elimination of cervical cancer as a public health problem. Online 2024. Kwint J. Why do women feel unheard and dismissed by health professionals? Nursing Times. 2024;120(5):54–5. Because Women’s Lives Matter, We Need to Eliminate Gender Bias. Critical Care Nurse. 2017;37(2):10–8. Womersley K. A chronicle of medical misogyny. The Lancet. 2025;406(10509):1210–1. Additional Declarations No competing interests reported. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-8622623","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":600310147,"identity":"7a48dbf1-57b8-474a-8b74-68262df91cee","order_by":0,"name":"Mary Hayes","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA+UlEQVRIiWNgGAWjYLACxgYQyXwAyiBeC1sCyVp4DIjTott+9pkE4w67xH7+M58/8+6wY+CXPn6B4Wcbbi1mZ9LNJBjPJCfOnJG7TZr3TDKDZF9OAWMvPi0H0tgkGNuYEzfc4N3GOLONmcHgDE8CAy8+LeefgbTUJ+4/f+bxx5lt9WAtjH/xabkBtuVw4gaGHAaJj22HgVrYDzDjteXGM2aLxLbjxjNupJkBtRznkezhYTgscw6fw9IYb3xsq5bt7z/8+ENiW7UcPw/7w4dvynBrAQIWiQQGBscGKI8HFEEH8GoAJpQPQMIeSYD9AQEdo2AUjIJRMMIAAHAKUmGzy6NTAAAAAElFTkSuQmCC","orcid":"","institution":"St Vincent's Hospital Sydney","correspondingAuthor":true,"prefix":"","firstName":"Mary","middleName":"","lastName":"Hayes","suffix":""},{"id":600310149,"identity":"c6beec5b-6a81-4cd2-a714-e706702b65a4","order_by":1,"name":"Claudia Rutherford","email":"","orcid":"","institution":"The University of Sydney","correspondingAuthor":false,"prefix":"","firstName":"Claudia","middleName":"","lastName":"Rutherford","suffix":""},{"id":600310153,"identity":"c7829c7d-bea6-44ff-b072-21451d754d1d","order_by":2,"name":"Richard John Hillman","email":"","orcid":"","institution":"St Vincent's Hospital Sydney","correspondingAuthor":false,"prefix":"","firstName":"Richard","middleName":"John","lastName":"Hillman","suffix":""},{"id":600310158,"identity":"85abc9ba-aeed-4257-8175-5d93055b3af1","order_by":3,"name":"Kate White","email":"","orcid":"","institution":"The University of Sydney","correspondingAuthor":false,"prefix":"","firstName":"Kate","middleName":"","lastName":"White","suffix":""}],"badges":[],"createdAt":"2026-01-17 00:08:15","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-8622623/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-8622623/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":104403148,"identity":"1c98178c-0542-4ebf-9d08-1e916c5f38b8","added_by":"auto","created_at":"2026-03-11 12:17:36","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":647265,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8622623/v1/bcb3ee84-9e56-4811-9713-ce285e3c5064.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"“I didn’t figure you were the sort of person who would get anal cancer”. A qualitative study of women’s insights into the challenges of a rare cancer.","fulltext":[{"header":"Introduction","content":"\u003cp\u003eThe incidence of anal cancer in women has been gradually increasing over the last four decades with women accounting for over 60% of cases reported in Australia in 2021 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Squamous cell carcinoma (SCC) accounts for 75\u0026ndash;95% of these cases, adenocarcinomas account for 5\u0026ndash;15% of cases, and very rare histologies including melanoma and adenocarcinomas account for the remaining cases (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). Over 90% of anal cancers diagnosed worldwide are associated with the human papillomavirus (HPV), an infection that is spread through intimate contact with genital skin (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). Specific populations considered most at risk of developing anal cancer include men who have sex with men, people living with HIV (PLWHIV), individuals who are immunocompromised (such as solid organ transplant recipients), and those with a history of pre-cancerous lesions of the ano-genital region (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Persistent misconceptions and limited public awareness of HPV have resulted in HPV-related cancers, including anal cancer, being recognized as a highly stigmatized condition. This is particularly true for women (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eHPV is recognized as the most common sexually transmitted infection worldwide, with 75% of sexually active individuals between the ages of 18 and 30 becoming infected with HPV at some stage (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). The World Health Organisation estimates that women are up to ten times more likely to contract HPV-related cancers including cervical, oropharyngeal, and anal cancer (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Among over 200 genotypes of HPV identified to date, HPV 16 causes 90% of anal cancers attributable to HPV (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e) The prophylactic HPV vaccine has been available since 2007 but is evidenced to be most effective when administered around or after sexual debut. Given that women are typically over the age of 50 when diagnosed, the benefits of this prophylactic vaccine will not be realised for several decades (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eLimited research has shown that symptomatic individuals typically wait an average 7.4 months from time of symptom onset to diagnosis, with only 54% undergoing a rectal examination at first visit to a medical practitioner (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). A retrospective review from University Hospitals Cleveland found that individuals diagnosed within six weeks of presentation had the highest rates of treatment completion and highest rates of complete response compared with those who waited longer than 6 weeks for a diagnosis (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). Bingmer and colleagues also noted that over half of participants were initially misdiagnosed with a benign anorectal condition, and nearly a quarter of patients were symptomatic for at least six months prior to diagnosis. The influence of feelings of stigma and shame on individuals\u0026rsquo; health seeking behaviours is well recognized. Conversely, the stigma associated with healthcare professionals\u0026rsquo; conducting clinical practices such as rectal examinations warrants more critical attention (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eStudies have examined women\u0026rsquo;s experience through the lens of quality of life (QOL) measures. Bowel, bladder, and sexual function are known to be negatively impacted by anal cancer treatment, women also reporting worse nausea, fatigue and insomnia compared to healthy controls (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). However, the use of generic QOL assessment tools that lack gender- and tumour-specificity in predominantly cross-sectional studies limits understanding and insight into the severity and extent of side effects experienced by women, specifically (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). This is compounded by a paucity of qualitative evidence that seeks to understand women\u0026rsquo;s experiences of anal cancer treatment specifically, with existing descriptive accounts arising incidentally from broader QOL studies that often include both men and women with a range of different cancers (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIn this qualitative study, we therefore aimed to explore women\u0026rsquo;s experience of receiving an anal cancer diagnosis and the effects of treatment on their lives in the weeks and months following. We sought to capture the nuanced and individualized nature of each woman\u0026rsquo;s experience, acknowledging their unique circumstances and the broader context of their healthcare journey.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy Design\u003c/h2\u003e \u003cp\u003eThis study was guided by hermeneutical inquiry, a qualitative research approach grounded in the philosophy of interpretation and understanding, where meaning is constructed through dialogue between the inquirer and participants, and their reflections of their experience (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). The research question guiding this study was \u0026lsquo;what are women\u0026rsquo;s lived experiences of being diagnosed with, and treated for, anal cancer?\u0026rsquo; This study was approved by the Human Research Ethics Committee at the primary recruiting hospital before the study commenced (2023/ETH00146).\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eStudy Site\u003c/h3\u003e\n\u003cp\u003eThis study was conducted at a large tertiary referral hospital with a specialist service dedicated to dysplasia and anal cancer, although participation was not limited to recipients of care there. Referrals were accepted from healthcare professionals working at other hospitals and cancer centres, provided the individual consented to being contacted. To ensure rigor and transparency throughout the study, we adhered to the Consolidated Criteria for Reporting Qualitative Research (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e).\u003c/p\u003e\n\u003ch3\u003eStudy Participants\u003c/h3\u003e\n\u003cp\u003eFifteen women who were treated with chemotherapy and radiotherapy for anal cancer were eligible to participate in the study. Participant characteristics are outlined in Table\u0026nbsp;1. Women were between nine months and 19 years post-treatment completion. Eight interviews were conducted in person and seven were conducted online.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eParticipant demographics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eVariable\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNumber of participants\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e45\u0026ndash;54\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e55\u0026ndash;64\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e65+\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eEthnicity\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCaucasian\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAsian/Pacific Islander\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eYear of treatment\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePrior to 2016\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2016\u0026ndash;2019\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2020\u0026ndash;2022\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2023- onwards\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eDistance from home to treating hospital\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;10 km\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e11\u0026ndash;20 km\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e21\u0026ndash;50 km\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;50 km\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e\n\u003ch3\u003eParticipant Recruitment and Consent Procedure\u003c/h3\u003e\n\u003cp\u003eTwo approaches were undertaken to recruit participants to the study:\u003c/p\u003e \u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003e1. Specialist oncology services\u003c/span\u003e\u003c/p\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eClinicians provided potential participants with an information sheet and obtained verbal consent to share their contact details with the study coordinator. The coordinator then contacted each individual, screened for eligibility, and explained the study in detail. Those who met the study criteria and agreed to participate provided written informed consent.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003e2. Snowball sampling strategy\u003c/span\u003e\u003c/p\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eExisting participants or healthcare professionals referred other potentially eligible individuals to the study coordinator. Upon referral, the lead researcher screened the individual, provided detailed study information, and obtained written informed consent from those who chose to participate.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\n\u003ch3\u003eData Collection\u003c/h3\u003e\n\u003cp\u003eSemi-structured interviews were conducted between April 2023 and April 2024 by the lead author, who had received training in qualitative research methods and interview techniques. Their reflexive role in data collection is acknowledged and addressed throughout the study, aligning with the epistemological stance that lived experiences are subjective and that data is co-constructed through interactions between the participant and the interviewer. An interview guide [Appendix 1] informed by a recent systematic review (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e) was developed by the team and piloted extensively prior to the commencement of recruitment. The guide was designed to be reviewed and revised iteratively as interviews progressed. Adjustments were made following team discussion based on preliminary findings from the first three interviews. Interviews were offered both using a secure virtual platform and in-person at the cancer centre, at a time of the participant\u0026rsquo;s choosing. The researcher used verbal cues to ensure consent was upheld throughout the interview. With explicit consent, all interviews were audio-recorded and transcribed using a professional transcription service. The lead author verified the transcripts before analysis commenced. The interviewer recorded field notes and observations such as body language in a study journal. Data saturation was agreed by the study team when similar experiences were presented without any new relevant information.\u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eData Analysis\u003c/h2\u003e \u003cp\u003eReflexive thematic analysis (RTA) offers a theoretically flexible approach to qualitative data, encouraging innovation, imagination and variability with an emphasis on reflexivity and active participation in theme generation and theme building (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). We followed Braun and Clarke\u0026rsquo;s six-step guide to analysis, iteratively moving through the recommended steps using NVivo software, whiteboards and virtual mapping platform, Miro, to identify codes and develop themes. We used an inductive analytic approach, eliminating the need to develop codebooks and templates. Coding was an iterative process, conducted independently by two reviewers. Codes and categories were shared and discussed as a group on several occasions to optimise theme development and coherence. Findings are reported in concordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e"},{"header":"Findings","content":"\u003cp\u003eThemes generated during RTA illustrate the complex and multifaceted nature of women\u0026rsquo;s experiences of anal cancer. Themes are organised around three key concepts: diagnostic delays, feelings of stigma and shame, and the profound, lasting impact of anal cancer on many aspects of a woman\u0026rsquo;s life. Pseudonyms are used throughout this paper to protect participants\u0026rsquo; identities, and italicised text indicates participants\u0026rsquo; own words.\u0026nbsp;\u003c/p\u003e\n\u003col\u003e\n \u003cli\u003e\u003cstrong\u003eDelayed recognition of a rare cancer- \u003cem\u003e\u0026ldquo;It\u0026rsquo;s not haemorrhoids... you have cancer\u0026rdquo;\u003c/em\u003e\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eAll bar one of the women experienced a significant delay obtaining an anal cancer diagnosis. The women described a similar path of presenting to their GP on multiple occasions with per rectum (PR) bleeding. They described having their concerns dismissed, being told it was most likely haemorrhoids, despite not undergoing a physical examination. For these women, delays meant enduring difficult protracted periods of discomfort due to unresolved symptoms, such as bleeding, which Olive described \u0026lsquo;\u003cem\u003ebecame messy\u0026nbsp;\u003c/em\u003eand \u003cem\u003edifficult to manage\u0026rsquo;\u003c/em\u003e. All of the women described a diagnosis of anal cancer as unsettling, a cancer of which they had little or no knowledge. Kelly described herself and her partner as \u0026lsquo;\u003cem\u003ebabes in the wood\u003c/em\u003e\u0026rsquo;, oblivious to the challenges that lay ahead of them. These feelings were compounded when members of the healthcare team also had limited or no knowledge of anal cancer. This lack of knowledge and awareness among the healthcare team had negative consequences on many aspects of the women\u0026rsquo;s experience, as expanded on below. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;To have cancer was a shock but to have that particular type of cancer\u0026hellip; that was even more of a shock. I said to the gastroenterologist, I cannot fathom it\u0026hellip; it\u0026rsquo;s still hard to accept. Even now.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e- Maureen\u003c/p\u003e\n\u003cp\u003eFor most women, receiving a diagnosis of anal cancer was a deeply shocking experience as the disease was both \u0026lsquo;\u003cem\u003econfronting and unfamiliar\u0026rsquo;\u003c/em\u003e. Maureen shared how she \u0026lsquo;\u003cem\u003edidn\u0026rsquo;t know anal cancer existed\u0026rsquo;.\u0026nbsp;\u003c/em\u003eMost of the women reported having limited or no prior knowledge that women were at risk of developing anal cancer, leading them to experience feelings of confusion, uncertainty, and a heightened sense of vulnerability. Several of the women elected to keep their diagnosis of anal cancer private to avoid questions from friends and family which they would not be able to address. Two chose to identify they had bowel cancer. Kelly explained how she reflected on past behaviours in an attempt to understand what might have led to their diagnosis and make sense of the situation.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;When he told me... you\u0026rsquo;ve got anal cancer, squamous cell carcinoma... all I could think of was... hang on, I\u0026rsquo;ve never showed my butt to the sun... I don\u0026rsquo;t understand\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e-\u003c/em\u003eKelly\u003c/p\u003e\n\u003cp\u003eWomen described a \u003cem\u003elack of knowledge and awareness among healthcare teams\u003c/em\u003e prior to and at the time of diagnosis. Their presenting symptoms were not initially linked to anal cancer and healthcare professionals did not consider it as a potential diagnosis. Most of the women, like Sally, explained how the GP \u0026lsquo;\u003cem\u003edidn\u0026rsquo;t even do a physical exam\u0026rsquo;\u003c/em\u003e, but was satisfied that she had haemorrhoids and advised over-the-counter topical medication. In reflecting on their experience and the knowledge gained throughout their diagnosis, the majority of women recognised that healthcare professionals had assessed them through a narrow lens of risk. As a result, their symptoms were often overlooked or misinterpreted, delaying appropriate investigations. Olive\u0026rsquo;s experience, outlined below, highlights the misconceptions held by her healthcare teams when considering what populations are at risk of developing this cancer.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp;\u0026ldquo;... so he [specialist] said I\u0026rsquo;ve never seen anal cancer and I didn\u0026rsquo;t figure you were the sort of person who would get anal cancer\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e-\u003c/em\u003eOlive\u003c/p\u003e\n\u003cp\u003eOlive described feeling angry and belittled by this remark as it was passed by the same practitioner who did not conduct a rectal examination and who missed the diagnosis during colonoscopy. The weight of the phrase \u0026lsquo;\u003cem\u003esort of person\u0026rsquo;\u003c/em\u003e was evident as Olive reiterated these words several times during the interview.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWomen in this study described a \u003cem\u003ecomplicated diagnostic trajectory marked by multiple appointments on account of persistent and distressing symptoms\u003c/em\u003e. The majority of women expressed frustration at having to repeatedly re-present to healthcare settings and be dismissed on several occasions. They described having to repeatedly present for medical attention, navigating feelings of self-doubt and shame, to have their concerns taken seriously.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp;\u0026ldquo;\u0026hellip; I knew something wasn\u0026rsquo;t right even though the blood test said there was nothing wrong. I just thought no\u0026hellip; and I kept going back, kept going back. I must have gone back there four times\u0026hellip;\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e-\u003c/em\u003eRoz\u003c/p\u003e\n\u003cp\u003eThe women\u0026rsquo;s experience extended beyond initial dismissal. For example, Roz went on to describe how a GP told her, \u003cem\u003e\u0026lsquo;I actually just think you have given yourself an ulcer worrying that there is something wrong with you\u0026rsquo;.\u0026nbsp;\u003c/em\u003eUndeterred by these comments or the unremarkable blood results, Roz later reflected on how proud she was of herself for trusting her body, \u0026lsquo;\u003cem\u003ebecause things could have been so much worse\u0026rsquo;\u003c/em\u003e had she not been persistent. Barriers were reportedly more challenging for women from rural and regional settings where referrals were often managed by a single practitioner in a community hospital. Kathleen, a rurally based participant, complained of itching and bleeding but was refused a colonoscopy on two occasions with the rationale that \u0026lsquo;\u003cem\u003ethere was nothing wrong with you three years ago\u0026rsquo;.\u003c/em\u003e She was eventually referred to another hospital, almost two hours away, where she was comprehensively assessed and underwent a colonoscopy.\u0026nbsp;\u003c/p\u003e\n\u003col start=\"2\"\u003e\n \u003cli\u003e\u003cstrong\u003eToo ashamed to share- \u003cem\u003e\u0026ldquo;I literally walked away from my job. I couldn\u0026rsquo;t bear to tell anyone what cancer I had.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eThirteen of fifteen participants described their diagnosis of anal cancer as \u0026lsquo;\u003cem\u003econfronting\u003c/em\u003e\u0026rsquo; or \u0026lsquo;\u003cem\u003edirty\u003c/em\u003e\u0026rsquo; and feared they would be considered promiscuous by their friends and family. Liz believed the misconception that anal cancer was a \u0026lsquo;\u003cem\u003egay man\u0026rsquo;s disease\u003c/em\u003e\u0026rsquo; to be true and was too ashamed to seek clarification. All women felt that their overall experience was largely attributed by the interactions they had with healthcare professionals on the pathway to diagnosis. The majority of women described how feelings of embarrassment, stigma and shame were not validated by healthcare professionals and how their attitudes reinforced negative feelings, making it more challenging for them to seek help or feel heard. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I think it was a bit of\u0026hellip; self-inflicted stigma, because I was a bit reluctant to even tell people that I have anal cancer because I thought they would probably look at me like I am this promiscuous person who\u0026rsquo;s been out and about\u0026hellip; It was really weird to communicate my diagnosis. It\u0026rsquo;s definitely different to say I\u0026rsquo;ve got breast or ovarian cancer than saying I\u0026rsquo;ve got anal cancer.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e- Sally\u003c/p\u003e\n\u003cp\u003eThe majority of women described the varying degrees to which \u0026lsquo;\u003cem\u003edisease-associated stigma shaped their overall experience of anal cancer\u0026rsquo;\u0026nbsp;\u003c/em\u003eand the isolating effectit had on them in the months and years that followed. One exception was Roz, who described how she didn\u0026rsquo;t \u0026lsquo;\u003cem\u003efeel ashamed, didn\u0026rsquo;t feel dirty... none of that\u0026rsquo;.\u0026nbsp;\u003c/em\u003eHowever, most women, like Sally (outlined above), found stigma impossible to avoid and reported how these feelings, compounded by the taboo nature of anal cancer, contributed to a strong sense of self-blame. Jude said, \u0026lsquo;\u003cem\u003eI just described it as \u0026lsquo;cancer of my plumbing\u0026rsquo; and I didn\u0026rsquo;t say any more than that\u0026rsquo;,\u0026nbsp;\u003c/em\u003eminimizing details for fear of judgement and discrimination. Jane\u0026rsquo; reflection below illustrates the emotional burden of shame and the tension that is created between knowing and feeling.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;It\u0026rsquo;s mortifying for me. I don\u0026rsquo;t want to tell somebody I\u0026rsquo;ve had anal cancer. There should be no shame about it but there is... people do not want to talk about anything to do with that area\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e-Jane\u003c/p\u003e\n\u003cp\u003eInsights from the women highlight how \u003cem\u003einternalized feelings of guilt and shame\u003c/em\u003e were intensified by perceived attitudes from healthcare professionals. Sally reflected on feeling like she \u0026lsquo;\u003cem\u003ehad a bit of explaining to do\u0026rsquo;\u003c/em\u003e as she did not see herself as fitting the perceived risk profiles for anal cancer. \u0026nbsp;Jane described several occasions where subtle cues like body language and lack of eye contact led her to believe that she was being judged or perceived as engaging in socially deviant behaviours.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I felt that all the people that I dealt with throughout my treatment judged me and they were embarrassed and didn\u0026rsquo;t want to look me in the eye\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e-Jane\u003c/p\u003e\n\u003cp\u003eOlive described \u0026lsquo;\u003cem\u003ewalking away\u0026rsquo;\u0026nbsp;\u003c/em\u003efrom her job because she \u0026lsquo;\u003cem\u003ecouldn\u0026rsquo;t bear to tell anyone\u0026rsquo;\u0026nbsp;\u003c/em\u003ewhat cancer she had, feeling \u0026lsquo;\u003cem\u003ecompletely overwhelmed\u0026rsquo;\u003c/em\u003e by the emotional toll of her diagnosis and the stigma associated with it. She even expressed how she \u0026lsquo;\u003cem\u003edesperately wanted to have breast cancer\u0026rsquo;\u003c/em\u003e so that she could share her diagnosis more openly and seek support from close friends and family.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eFor about a third of the women who were referred to a dedicated specialist service, their experience with the healthcare team and the care that they received was overwhelmingly positive. In contrast to previous clinical encounters, Maureen described the specialist team as empathetic and attentive to the emotional impact of their diagnosis and treatment, \u0026lsquo;\u003cem\u003eepitomising true care\u0026rsquo;\u003c/em\u003e. She went on to describe feeling recognised as an individual, rather than being reduced to her condition, which meant she was better able to absorb complex and relevant information related to her follow-up care. However, frustrations were shared about the timing of specialist involvement. Lily felt that \u0026lsquo;\u003cem\u003ewaiting three months after treatment to see [specialist] to talk about everything was unreasonable\u0026rsquo;,\u0026nbsp;\u003c/em\u003econsidering adverse effects had already manifested by this time.\u0026nbsp;\u003c/p\u003e\n\u003col start=\"3\"\u003e\n \u003cli\u003e\u003cstrong\u003e\u0026nbsp;The ripple effect on all aspects of a woman\u0026rsquo;s life\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eThe majority of women described their experience as \u0026lsquo;\u003cem\u003elife-changing\u0026rsquo;\u003c/em\u003e with many areas of their life and livelihood profoundly impacted directly and indirectly by treatment-related consequences. Six participants who lived regionally and rurally had to temporarily relocate for the duration of their treatment to be closer to treatment facilities. Kelly emphasized that the two weeks after treatment finished were \u0026lsquo;\u003cem\u003eworse than the worst time\u0026rsquo;,\u0026nbsp;\u003c/em\u003eintensified by being back home and far from the support of the cancer centre\u003cem\u003e.\u0026nbsp;\u003c/em\u003eShe described her distress, \u0026lsquo;\u003cem\u003esobbing into the phone to the nurses saying DO something\u0026rsquo;\u0026nbsp;\u003c/em\u003ebut felt that the COVID-19 pandemic dissuaded her healthcare teams from admitting her to hospital for full assessment and management of her symptoms. All bar two women commented on the lack of\u003cem\u003e\u0026nbsp;\u0026lsquo;medical support\u0026rsquo;\u003c/em\u003e available to them and the lack of knowledge among healthcare professionals regarding supportive care services that women could avail of once treatment had finished.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp; \u0026nbsp;\u0026ldquo;There were definitely times when I would have\u0026hellip; if there had been a little green pill and they had said take this pill and that\u0026rsquo;s the end\u0026hellip; you\u0026rsquo;re gone, you\u0026rsquo;re dead\u0026hellip; I would have taken it. No problem. No question. It was so, so bad.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e-\u003c/em\u003eKelly\u003c/p\u003e\n\u003cp\u003eOf the six women who did not live close to any treatment facility, all felt \u003cem\u003einconvenienced by having to travel to metropolitan areas\u003c/em\u003e.Temporarily relocating to someplace unfamiliar without their family or friends nearby placed considerable physical and emotional strain on themselves and their wider support networks. Maureen moved interstate for seven weeks, staying with a friend for the entire time and walking to treatment appointments for as long as she was physically able. Kathleen stayed in hospital accommodation for over six weeks where she described several challenges like having to share a bathroom and other amenities with strangers. Kelly, who previously described herself and her partner as \u0026lsquo;\u003cem\u003ebabes in the wood\u0026rsquo;,\u0026nbsp;\u003c/em\u003ehad to quickly rethink their plans when the challenges of navigating treatment alone, compounded by the strain of being away from home and staying in a hotel, became increasingly difficult and isolating.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I thought, it\u0026rsquo;s only radiation, how bad can it be\u0026hellip; I\u0026rsquo;ll just come down to [city] and go back home on the weekends\u0026hellip; but then we realised quite quickly that this isn\u0026rsquo;t as easy as we thought it was going to be so [partner] came and stayed and saw me through the last weeks\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e- Kelly\u003c/p\u003e\n\u003cp\u003eAll bar one woman described how the \u003cem\u003elasting consequences of treatment disrupted established and perceived roles\u0026nbsp;\u003c/em\u003ewithin family networks and workplace environments, resulting in significant lifestyle changes. As well as Olive, Annie also left her job because the \u0026lsquo;\u003cem\u003ecommute was too far without a toilet\u0026rsquo;\u003c/em\u003e. Below, Kaye describes the significant and permanent lifestyle changes following her anal cancer diagnosis, noting a rapid and unexpected shift in her role from business owner to patient to carer within months.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;So I went from running this huge business working 70 hours a week to then go off and start chemotherapy and radiotherapy for anal cancer and then caring for my husband through his cancer journey...\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e-Kaye\u003c/p\u003e\n\u003cp\u003eThe \u003cem\u003eimpacts described by women were intensified by the lack of supportive care services available\u003c/em\u003e during and following treatment completion. Rosemary explained how \u0026lsquo;y\u003cem\u003eour whole mind is obsessed with cancer\u0026rsquo;\u0026nbsp;\u003c/em\u003ebut you must \u0026lsquo;\u003cem\u003esuck it up and get on with it\u0026rsquo;\u003c/em\u003e. Jane felt \u0026lsquo;\u003cem\u003eextremely unsupported\u0026rsquo;,\u0026nbsp;\u003c/em\u003eemphasising that \u0026lsquo;\u003cem\u003eeverything\u0026rsquo;\u0026nbsp;\u003c/em\u003ecould be done better, \u0026lsquo;\u003cem\u003egiven that there was really no support\u0026rsquo;.\u0026nbsp;\u003c/em\u003eLily described how she longed to talk to \u0026lsquo;\u003cem\u003esomebody who\u0026rsquo;s been through it [anal cancer]\u0026rsquo;\u0026nbsp;\u003c/em\u003eto get a clear understanding of what to expect and how to prepare but was not referred to any group. Sally described the benefits she received from joining \u0026lsquo;\u003cem\u003ecancer rehab classes\u0026rsquo;\u0026nbsp;\u003c/em\u003ewhich were exercise-based classes exclusively available to women who had lived experience of cancer. However, she lamented the fact that she wasn\u0026rsquo;t informed about these services by her treating team and she empathised with women living in regional or remote areas who \u0026lsquo;\u003cem\u003ehad no hope\u0026rsquo;\u0026nbsp;\u003c/em\u003eof accessing any services like these.\u0026nbsp;\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study provides the first in-depth description of women\u0026rsquo;s unique and individual experiences of anal cancer to date. The women\u0026rsquo;s experiences, and the impact this had on many aspects of their lives, were readily recalled and laden with emotion. The women explained how their pathways to diagnoses highlighted significant gaps and a lack of awareness about anal cancer among practitioners in the primary care setting. Gaps were also identified within hospital settings and cancer centres, where anal cancer is uncommonly diagnosed and treated. Participants described multiple interactions with various care team members that revealed prevalent misconceptions about women\u0026rsquo;s risk of anal cancer among healthcare professionals and the public. Arguably, more concerning was the tendency of primary care providers to rely on clinical pathology rather than conduct a physical examination, which often delayed diagnosis until symptoms had significantly worsened. Each of the women described having to present on multiple occasions, advocating for themselves as symptoms escalated to obtain a specialist referral and eventually reach a diagnosis. These ongoing exchanges caused prolonged uncertainty for women, many of whom were already anxious and ashamed about their presenting symptoms. Such instances left women feeling unheard, dismissed, and ignored, a phenomenon gaining attention within medical journals in recent times (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eAs outlined above, women\u0026rsquo;s experiences were made significantly worse by the fact that anal cancer is rare. It is widely evidenced that, as a result of less scientific consideration and funding, individuals with rare cancers face distinct challenges including misdiagnosis, delayed diagnosis, limited access to specialised clinical expertise and appropriate treatments, and uncertainty in clinical decision making (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e). Even within charities and organisations dedicated to rare and uncommon cancers, awareness about specialist services is lacking, with Rare Cancers Australia failing to include the only dedicated anal cancer specialist service in New South Wales on their web page (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). The International Anal Neoplasia Society (IANS), are paving the way for clinical practice change by raising awareness of anal cancer through developing screening guidelines for high-risk groups (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e) and offering specialist courses to upskill practitioners in the practice of high resolution anoscopy (HRA), the gold standard intervention for detecting anal squamous cell carcinoma precursors and very early cancers (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e). Despite these advances and keeping in mind the limitations associated with accessing specialist services dedicated to anal cancer, our findings serve as a timely reminder of the persistent gap in translating research and clinical practice guidelines from specialist organisations into everyday practice within cancer and primary care settings. Since over 60% of anal cancer cases occur in women (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e), more needs to be done in the primary care setting to highlight their risk profile.\u003c/p\u003e \u003cp\u003eReflective of existing literature, many study participants had never heard of anal cancer, despite a consistent increase in the number of cases over the last four decades, and knew little, if anything, about anal cancer treatment (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e). Similar lack of knowledge and awareness has been observed among PLWHIV where there is significant discord between actual and perceived risk (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e). These gaps highlights a critical opportunity to leverage the unique position of specialist primary care providers in increasing awareness around anal cancer and HPV as a causative factor and addressing misconceptions. Integrative approaches between specialist and primary care settings have proven effective in reducing stigma in the mental health setting (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e) and could be adapted to support the successful implementation of anal cancer screening guidelines. Gynaecologists who see women with a history of vulvo-vaginal and cervical malignancies, and have around a ten-fold increased risk of developing anal cancer, are also well placed to raise awareness about the symptoms and risk factors associated with the disease. Stigma remains a major barrier. The perceived linkage between anal cancer and anal sex, coupled with broader taboos around genitalia and sexuality, continues to hinder targeted health promotion campaigns (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e). Yet, these barriers are not insurmountable. Public discourse around sexuality and sexual behaviours once shaped attitudes towards cervical cancer and screening (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e) but the benefits of successful screening programs all around the world are now being realised, with many countries, including Australia, now moving towards eliminating cervical cancer (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e). While a national screening program for anal cancer is yet to be established, insights and learnings from national cervical cancer screening programs worldwide offer valuable insights for tackling stigma and improving early detection.\u003c/p\u003e \u003cp\u003eAlthough this progress in the public health space is promising, systemic clinician behaviours and attitudes prevalent in women\u0026rsquo;s health must be addressed. In this study, the shortcomings of the healthcare teams often manifested in harmful remarks towards the women. When Roz was told to stop worrying or \u0026lsquo;\u003cem\u003eshe would give herself an ulcer\u0026rsquo;\u003c/em\u003e, the responsibility for the situation was shifted onto her, effectively labelling her as the problem. Growing literature around the dismissal of women\u0026rsquo;s concerns in healthcare settings suggests that a lack of time, knowledge and shared decision making has contributed to women feeling unheard and dismissed, and that care recipients are perceived to have unrealistic expectations of treatment by their healthcare teams (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e). The title of this paper reflects how women were made to feel as though they did not belong to this diagnosis, a sentiment shaped by the language and tone used by clinicians that left a lasting emotional impact. Medical misogyny, a well-documented phenomenon in both clinical literature and mainstream media, may underpin some of these interactions. Gendered biases, shown to contribute to diagnostic delays, dismissive care, and a lack of sensitivity in communication (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e), coupled with the challenges associated with rare cancers, creates a particularly challenging environment for women with anal cancer. Encouragingly, of the minority of women in our study who were followed up in a specialist setting, all described how the normalisation of anal cancer care by their clinicians helped to alleviate feelings of stigma and shame. However, the broader issue of inclusion remains. Minimal consideration of trans, non-binary and gender diverse individuals as well as individuals from ethnic backgrounds in clinical research continues to perpetuate inequity and reinforce stigma (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e), particularly in conditions like anal cancer, where gendered assumptions and social taboos already complicate diagnosis, treatment, and support.\u003c/p\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eRecommendations\u003c/h2\u003e \u003cp\u003eAnal cancer is on the rise, especially in women. Integrating public health messaging into existing health programs such as bowel cancer screening programs, workplace health programs, and retirement planning, may help to increase awareness and early detection of anal cancer. Public health campaigns may need to leverage the support of peak cancer bodies such as Cancer Council Australia and the Cancer Society of New Zealand to optimise reach and ensure cultural appropriateness across diverse populations. Targeted education and communication training programs may avoid diagnostic delays and help healthcare professionals to develop the necessary skills to address sensitive topics such as the sexual transmission of HPV and causative factors associated with anal cancer that are perceived as taboo.\u003c/p\u003e \u003cp\u003eLooking ahead, greater investment in rare cancer research must be prioritised to improve diagnosis, treatment, and support for underrepresented groups. Future research should disaggregate data based on sex and gender and include trans, non-binary and gender diverse individuals who are not represented in this study sample despite best efforts. Efforts must also be made to enhance inclusivity of First Nations individuals and those from culturally and linguistically diverse backgrounds. Studies exploring the impact of gender bias and medical misogyny on cancer care are needed to uncover persistent gaps in clinical practice and literature.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003eOnline interviews posed some challenges including technical issues, disjointed conversations, and potentially missed visual clues such as body language. However, remote participation may have encouraged greater openness among participants compared to in-person interviews. Although reflective of a realistic recruitment challenge given the rarity of anal cancer, the absence of gender-diverse and culturally and linguistically diverse participants is a limitation in this study.\u003c/p\u003e \u003cp\u003eThe reflexivity of the interviewer and research team as co-constructors of the data must be considered when interpreting the results. The subjectivity inherent in this analysis is characteristic of qualitative research. Were the interviews to be repeated in a different context, with a different interviewer, it is unlikely that the same data would be collected, although commonalities would remain.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eFindings from this in-depth qualitative study illustrate the unique and complex experiences of women undergoing treatment for anal cancer. Contextual factors such as stigma and shame significantly influenced referral and treatment pathways, which led to delayed diagnoses and intensified emotional burden. Limited knowledge among healthcare teams across both acute and primary care settings further compounded this burden and led to substantial delays in initiating treatment. The recent introduction of anal cancer screening guidelines is a timely opportunity for healthcare settings across Australia and worldwide to increase awareness of anal cancer as a disease and implement targeted education.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eEthics approval was obtained from the primary recruiting hospital as listed in the text.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAll authors and study participants consent to the publication of this paper.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe datasets generated and analysed during the study are not publicly available due to the sensitive nature of information collected. The corresponding author can be contacted with any data queries.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe authors declare no competing interests related to this publication.\u0026nbsp;\u003c/p\u003e\n\u003ch2\u003eFunding\u003c/h2\u003e\n\u003cp\u003eThis study was generously funded by St. Vincent\u0026rsquo;s Clinic Research Foundation and St. Vincent\u0026rsquo;s Curran Foundation.\u003c/p\u003e\n\u003cp\u003eThe authors would like to acknowledge and thank all study participants who took time to participate in an interview, as well as healthcare colleagues and cancer patient support groups who helped with recruitment to the study. We also acknowledge and thank Natalie D\u0026rsquo;Abrew for her support with data analysis.\u003c/p\u003e\n\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\n\u003cp\u003eAll authors contributed to the study design. MH and RJH facilitated study recruitment and data collection. MH and KW led data analysis and interpretation of findings. All authors contributed to writing the manuscript and have reviewed the final version.\u003c/p\u003e\n\u003ch2\u003eAcknowledgement\u003c/h2\u003e\n\u003cp\u003eWe thank all our study participants who took time to participate in an interview, as well as staff specialists, specialist clinic staff and cancer patient support groups who helped with recruitment to the study. We also acknowledge and thank Natalie D\u0026rsquo;Abrew for her support with data analysis.\u003c/p\u003e\n\u003ch2\u003eData Availability\u003c/h2\u003e\n\u003cp\u003eThe datasets generated and analysed during the study are not publicly available due to the sensitive nature of information collected. The corresponding author can be contacted with any data queries.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAustralian Institute of Health and Welfare. Australian Cancer Incidence and Mortality (ACIM) books: Anal cancer. 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Curr Oncol. 2023;30(8):7532\u0026ndash;41.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003evan Dongen J, de Heus E, Eickholt L, Schrieks M, Zantingh I, Brouwer OR, et al. Challenges and controversies patients and (health care) professionals experience in managing vaginal, vulvar, penile or anal cancer: The SILENCE study. European journal of cancer care. 2022;31(6):e13676.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRiessman CK. Narrative methods for the human sciences: Sage; 2008.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGuba EG, Lincoln YS. Paradigmatic Controversies, Contradictions, and Emerging Confluences. The Sage handbook of qualitative research, 3rd ed. Thousand Oaks, CA: Sage Publications Ltd; 2005. p. 191\u0026ndash;215.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 2007;19(6):349\u0026ndash;57.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHayes M, White K, Hillman RJ, Rutherford C. The impact of anal cancer treatment on female sexuality and intimacy: a systematic review. Support Care Cancer. 2025;33(9):788.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBraun V, Clarke V, Hayfield N, Davey L, Jenkinson E. Doing Reflexive Thematic Analysis. In: Bager-Charleson S, McBeath A, editors. Supporting Research in Counselling and Psychotherapy: Qualitative, Quantitative, and Mixed Methods Research. Cham: Springer International Publishing; 2022. p. 19\u0026ndash;38.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMcNiven A, Dobson A, Read K, Dixon S. 'My patients are\" gunning for a fight\" that I don't want': reflecting on feeling dismissed and conflict-expectant consultations. British Journal of General Practice. 2025;75(754).\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePillai RK, Jayasree K. Rare cancers: Challenges \u0026amp; issues. Indian Journal of Medical Research. 2017;145(1):17\u0026ndash;27.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRare Cancers Australia. Anal Cancer https://\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e\u003c/span\u003e\u003cspan address=\"http://www.rarecancers.org.au/knowledgebase/cancer-types/anal-cancer/\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e [Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.rarecancers.org.au/knowledgebase/cancer-types/anal-cancer/\u003c/span\u003e\u003cspan address=\"https://www.rarecancers.org.au/knowledgebase/cancer-types/anal-cancer/\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eStier EA, Clarke MA, Deshmukh AA, Wentzensen N, Liu Y, Poynten IM, et al. International Anal Neoplasia Society's consensus guidelines for anal cancer screening. International Journal of Cancer. 2024;154(10):1694\u0026ndash;702.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMascarenhas Saraiva M, Spindler L, Fathallah N, Beaussier H, Mamma C, Ribeiro T, et al. Deep Learning in High-Resolution Anoscopy: Assessing the Impact of Staining and Therapeutic Manipulation on Automated Detection of Anal Cancer Precursors. Clin Transl Gastroenterol. 2024;15(4):e00681.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eChaballout BH, Chang EM, Shaverdian N, Lee PP, Beron PJ, Steinberg ML, et al. The Patient's perspective on radiation therapy for anal cancer: Evaluation of expectations and stigma. Cancer Rep (Hoboken). 2023;6(12):e1908.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCruz G, Ramos-Cartagena JM, Torres-Russe JL, Col\u0026oacute;n-L\u0026oacute;pez V, Ortiz-Ortiz KJ, Pericchi L, et al. Barriers and facilitators to anal cancer screening among people living with HIV in Puerto Rico. BMC Public Health. 2023;23(1):1940.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKohrt BA, Jordans MJ, Turner EL, Rai S, Gurung D, Dhakal M, et al. Collaboration with people with lived experience of mental illness to reduce stigma and improve primary care services: a pilot cluster randomized clinical trial. JAMA network open. 2021;4(11):e2131475-e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBraun V, Gavey N. \u0026ldquo;Bad girls\u0026rdquo; And \u0026ldquo;Good girls\u0026rdquo;? sexuality and cervical cancer. Women's Studies International Forum. 1999;22(2):203\u0026ndash;13.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBrotherton J MD, Smith M et al. 2024 Cervical Cancer Elimination Progress Report: Australia\u0026rsquo;s progress towards the elimination of cervical cancer as a public health problem. Online 2024.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKwint J. Why do women feel unheard and dismissed by health professionals? Nursing Times. 2024;120(5):54\u0026ndash;5.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBecause Women\u0026rsquo;s Lives Matter, We Need to Eliminate Gender Bias. Critical Care Nurse. 2017;37(2):10\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWomersley K. A chronicle of medical misogyny. The Lancet. 2025;406(10509):1210\u0026ndash;1.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"supportive-care-in-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jscc","sideBox":"Learn more about [Supportive Care in Cancer](https://www.springer.com/journal/520)","snPcode":"520","submissionUrl":"https://submission.nature.com/new-submission/520/3","title":"Supportive Care in Cancer","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Anal cancer, Anal cancer treatment, Women’s health, Qualitative research","lastPublishedDoi":"10.21203/rs.3.rs-8622623/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8622623/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSquamous cell carcinoma of the anus is the most common form of anal cancer, predominantly caused by specific genotypes of human papillomavirus (HPV). HPV is the most common sexually transmitted infection worldwide, yet understanding among the public remains limited. Although anal cancer disproportionately affects women, little is known about their experience. This study explored the effects of anal cancer treatment on women.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis qualitative study, guided by hermeneutical inquiry, recruited participants from a large tertiary referral hospital. Eligible individuals were those assigned female at birth who had undergone chemotherapy and radiotherapy with curative intent for anal cancer. Data were collected using semi-structured interviews to gain a deep understanding of women’s experiences. Reflexive thematic analysis was used to analyse the findings.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFindings\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFifteen women aged between 45 and 72 participated in interviews to share their experiences. Study findings highlighted the complex experiences of women diagnosed with and treated for anal cancer. \u0026nbsp;Analysis identified three main themes that reflected women’s experience:\u003c/p\u003e\n\u003cp\u003e1. Delayed recognition of a rare cancer- \u003cem\u003e“It’s not haemorrhoids… you have cancer.”\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e2. Too ashamed to share- \u003cem\u003e“I literally walked away from my job. I couldn’t bear to tell anyone what cancer I had.”\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e3. A diagnosis of anal cancer has a ripple effect on all aspects of a woman’s life.\u003c/p\u003e\n\u003cp\u003eWomen shared in-depth descriptions of the lasting physical, psychological and social effects that they experienced from symptom onset through to survivorship. A lack of information and the absence of dedicated specialist services were frequently identified as key contributors to women’s experiences.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study offers valuable insights into women’s experiences of anal cancer, with stigma and shame commonly identified as barriers to timely diagnosis and comprehensive care. Addressing misconceptions and improving public and professional awareness are essential in reducing disease-associated stigma and facilitating more timely and effective care. The recent introduction of anal cancer screening guidelines for people living with HIV in Australia presents a timely opportunity to enhance care for this underserved patient group.\u003c/p\u003e","manuscriptTitle":"“I didn’t figure you were the sort of person who would get anal cancer”. A qualitative study of women’s insights into the challenges of a rare cancer.","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-03-06 13:13:39","doi":"10.21203/rs.3.rs-8622623/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"reviewersInvited","content":"","date":"2026-03-03T19:00:48+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-03-03T18:57:09+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-02-04T07:43:55+00:00","index":"","fulltext":""},{"type":"submitted","content":"Supportive Care in Cancer","date":"2026-01-16T23:56:07+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"supportive-care-in-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jscc","sideBox":"Learn more about [Supportive Care in Cancer](https://www.springer.com/journal/520)","snPcode":"520","submissionUrl":"https://submission.nature.com/new-submission/520/3","title":"Supportive Care in Cancer","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"5503016c-4bea-4305-b3a1-2a5d7e9b4ccd","owner":[],"postedDate":"March 6th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-03-06T13:13:39+00:00","versionOfRecord":[],"versionCreatedAt":"2026-03-06 13:13:39","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8622623","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8622623","identity":"rs-8622623","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}