Rare Vaginal and Vulvar Cancers Are Being Missed: Here's Why Better Screening Guidelines Matter
Vaginal and vulvar cancers are rare, but their survival rates tell a troubling story: only 53% of people with vaginal cancer and 74% with vulvar cancer survive five years, compared to 93% for breast cancer. The gap isn't due to better treatments for common cancers alone. It's because these rarer gynecological cancers are harder to diagnose, clinicians see them infrequently, and there are no standardized screening guidelines to catch them early.
In Australia in 2025, there were only 117 new cases of vaginal cancer and 401 new cases of vulvar cancer diagnosed, compared to tens of thousands of breast cancer cases annually. This rarity means many general practitioners may never see a single case during their entire career, leaving them less equipped to recognize warning signs or know how to refer patients for proper evaluation.
Why Are These Cancers So Hard to Catch?
Unlike cervical cancer, which has well-established screening programs, vaginal and vulvar cancers lack specific early detection tests. They also present with vague symptoms that could be mistaken for other, less serious conditions. A systematic review of international guidelines found that while most addressed prevention and early detection, only about half covered how to recognize symptoms, conduct initial investigations, or make a diagnosis.
The challenge is compounded by the fact that Australia's only existing guidelines for these cancers were published 10 years ago by the Chris O'Brien Lifehouse. While general practitioners can access them, they're outdated and don't reflect current best practices. Internationally, researchers identified 45 guidelines, but most focused on vulvar cancer (62%) rather than vaginal cancer (22%), leaving significant gaps in diagnostic pathways.
What Role Does HPV Play in These Cancers?
Human papillomavirus (HPV) is a major risk factor for both cervical and vulvar cancers. HPV causes about 95% of cervical cancer cases, and the same virus can lead to precancerous changes in the vulva and vagina. The good news is that HPV vaccination can prevent many of these cancers before they start. The vaccine Gardasil prevents infection with multiple HPV types that cause cancer and is about 90% effective at preventing HPV-related cancers when given before exposure to the virus.
Physicians recommend that young people receive the HPV vaccine at ages 11 or 12, ideally before becoming sexually active, though it can be given as early as age 9. Older teens and adults up to age 26 can also benefit from vaccination, even if they've already been exposed to some HPV types, as the vaccine may protect against other high-risk strains they haven't encountered.
How Can Screening Catch These Cancers Earlier?
The cervical screening program offers an unexpected opportunity to detect vaginal and vulvar cancers and their precursors. During routine cervical screening, healthcare providers can visually inspect the vulva and vagina, potentially catching abnormal lesions before they become invasive. However, the shift toward self-collection for HPV testing, while effective at reaching women who skip traditional screening, limits these incidental findings because patients aren't examined in person.
When abnormal lesions are found, a biopsy is warranted if they don't resolve or are suspected to be invasive. The diagnostic process should include a thorough medical history, physical examination, and testing such as cytology (cell samples) plus HPV testing and blood work. If results are abnormal, patients should be referred to a gynecologist for further evaluation, including colposcopy and biopsy for confirmation.
Steps to Improve Early Detection of Vaginal and Vulvar Cancers
- Implement standardized diagnostic pathways: Australia needs an Optimal Care Pathway (OCP) for vaginal and vulvar cancers, similar to those that exist for cervical, endometrial, and ovarian cancers. Research shows that care consistent with established OCPs improves survival rates and leads to earlier diagnosis, independent of new treatments.
- Update clinical guidelines: New, evidence-based guidelines should replace the 10-year-old Australian guidelines and address barriers to implementation, resource needs, and specific timeframes for diagnosis. The National Institute for Health and Care Excellence recommends diagnosis or ruling out cancer within 28 days of an urgent general practitioner referral.
- Include patient voices in guideline development: Few current guidelines incorporate the views and preferences of people with lived experience. Guidelines should be culturally appropriate and address known inequities affecting Aboriginal and Torres Strait Islander people, rural and remote populations, and older Australians.
- Educate primary care providers: General practitioners need better training and resources to recognize symptoms of vaginal and vulvar cancers and know when to refer patients for specialist evaluation. Improved awareness can help prevent delayed diagnoses.
What Does HPV Vaccination Success Look Like?
Recent data from England provides compelling evidence that HPV vaccination works at the population level. Among women aged 20 to 24 who received the vaccine at ages 12 to 13 with coverage near 88% to 90%, no cervical cancer deaths were reported between 2020 and 2024. Historically, about 23 deaths would have been expected in this group, representing a 100% mortality reduction.
Earlier cohorts that received vaccination at older ages and had lower coverage also showed significant reductions: 80% among women aged 20 to 24 in 2015 to 2019 and 69% among women aged 25 to 29 in 2020 to 2024. Overall, vaccination was associated with approximately 199.6 cervical cancer deaths averted in England through the end of 2024.
"The findings support the WHO goal of eliminating cervical cancer as a public health problem and reinforce the importance of achieving and maintaining high vaccination coverage among young adolescents, especially as vaccine uptake declines," noted researchers Peter Sasieni and Milena Falcaro in their analysis published in The Lancet.
Peter Sasieni, PhD, and Milena Falcaro, PhD, researchers cited in The Lancet
What Should You Do If You're Concerned?
If you have symptoms such as abnormal vaginal bleeding, persistent itching or pain in the vulva, or any lesions that don't heal, talk with your primary care provider or gynecologist. Regular pelvic exams and Pap tests remain important screening tools, even if you have no symptoms. If you're under 26 and haven't been vaccinated against HPV, discuss vaccination with your healthcare provider to protect against future infection.
The path forward requires action at multiple levels: updated clinical guidelines, better provider education, inclusion of patient perspectives, and continued investment in HPV vaccination programs. Until these changes are implemented, many cases of vaginal and vulvar cancer will continue to be diagnosed late, when treatment options are more limited and outcomes are poorer.