Quality guidelines needed for prevention and diagnosis of vaginal and vulvar cancers

The five-year relative survival rate for vaginal and vulval cancers (53% and 74%, respectively) are much lower than for more common women’s cancers such as breast (93%) and endometrial (84%) cancers. The reasons for poorer survival are multifactorial but likely stem in part from the rarity of these cancers. In 2025, there were only 117 new cases of vaginal cancers and 401 new cases of vulvar cancers diagnosed in Australia. This means that clinicians are less likely to be familiar with their diagnosis and management. For example, general practitioners might only ever see one, or no, cases during their career. These cancers are also challenging to diagnose due to a lack of specific symptoms and early detection screening tests. Improved understanding and awareness of these rarer cancers may help improve clinical assessment, which can help to prevent and diagnose these cancers. This improved understanding and awareness can come in the form of additional education and guidance for clinicians.

For more common cancers, such as cervical, endometrial and ovarian cancers, Optimal Care Pathways (OCPs) have been developed to provide national standards for quality and equitable care across the cancer continuum. While research is not available across all cancers, it has been shown, for example, that care consistent with the OCP for colorectal cancer was associated with improved survival in colon cancer patients, independent of new diagnostic tests or treatments, lower disease stage at diagnosis and lower likelihood of emergency surgery. At this time, an OCP is not yet available for vaginal and vulvar cancers,

To understand the resources available to support vaginal and vulvar cancers prevention and diagnosis we conducted a systematic review to identify, evaluate and synthesise current guidelines (within the past 10 years) on diagnostic pathways for women with vaginal and vulvar cancers. Diagnosis and prevention were the focus of this review, with staging and treatment beyond the scope of this review. We included evidence-based and consensus-based guidelines relevant to the first three stages of the Optimal Care Pathways:

1. prevention and early detection; 
2. presentation, initial investigations and referral; and 
3. diagnosis.

Existing guidelines included in our review

Overall, we identified 45 guidelines internationally; two were developed in Australia. The two guidelines developed in Australia were published by the Chris O’Brien Lifehouse for vaginal and vulvar cancers. While GPs can access these two guidelines, they are now 10 years old and should be viewed with this in mind. More of the guidelines addressed vulvar cancer (62%) than vaginal cancer (22%), with 16% addressing both types of cancers. Most guidelines covered prevention and early detection (82%), but only about half mentioned presentation, initial investigations and referral (53%) or diagnosis (51%).

Consistent recommendations were identified

What’s missing from current guidelines?

Views and Preferences of Consumers: Few guidelines incorporated the views and preferences of consumers (ie, people with a lived experience). For guidelines to be useful across a range of settings, consumers from identified priority groups should be included during the development of Optimal Care Pathways. This may assist with addressing known inequities. Examples of priority population groups, as identified by The Australian Cancer Plan, include Aboriginal and Torres Strait Islander people, people living in rural and remote areas and older Australians.

Applicability: Guidelines were rated low in terms of applicability. They could include the following to improve applicability of the recommendations and statements for the diagnosis of vaginal and vulvar cancers:

• Address facilitators and barriers to implementing the recommendations;
• Provide advice on how recommendations can be put into practice;
• Describe the potential resource implications;
• Methods for monitoring guideline uptake.

In Australia, the creation of a OCP for vaginal and vulvar cancers could help improve current practices, combining existing evidence and expert opinion presented in guidelines. OCPs can address limitations of current guidelines by including consumers in developing OCPs, providing additional recommendations specific to priority populations, and providing guidance for implementation into clinical practice. Guidelines should be culturally appropriate. Recommendations should be consistent and specific timeframes need to be outlined for diagnosis.

Implications for clinical practice and future development of OCPs 

Current screening practices should be evaluated prior to creating new OCPs. While the National Cervical Screening Program aims to reduce the impact of cervical cancer, it also offers the opportunity to detect cancers and their precursors through visual examination of the vulva and vagina. While self-collection for HPV screening is an effective strategy to reach under- and never-screened women, it limits opportunities for incidental findings during physical exams. The impact of self-collection on HPV-independent cases (eg, identified from visual inspection not HPV testing) should be considered.

An OCP for vaginal and vulvar cancers can help support GPs in clinical practice, providing clear, standardised pathways for prevention and detection. Rare Cancers Australia are currently developing an OCP for people with rare and less common cancers and it would be beneficial to keep updated with this pathway as it develops.

Ms Ambika Aul is a recent Bachelor of Health Sciences (Honours) graduate from the University of Queensland, with her honour’s thesis focusing on gynaecological cancer epidemiology. She recently published her first paper which looked at assessing guidelines for the prevention and diagnosis of vaginal and vulvar cancers.

Professor Susan Jordan is a medically trained epidemiologist and NHMRC Leadership Fellow  at the University of Queensland School of Public Health, where she leads a team investigating aetiology and patterns of care in gynaecological and endocrine cancers.

Dr Tracey DiSipio is a cancer epidemiologist in the School of Public Health, The University of Queensland. Her program of research is focused on improving outcomes for women with gynaecological cancer by conducting consumer-informed epidemiological research and behavioural interventions that address survivorship issues. Her research has a strong emphasis on under-researched groups including women diagnosed with vaginal and vulvar cancer.