“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.

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.