Ano-uro-genital Guidelines Update

Melanoma Focus is delighted to announce the launch of the updated Ano-uro-genital Mucosal Melanoma Guidelines. These multidisciplinary guidelines support healthcare professionals involved in the diagnosis, referral and management of people with this rare form of melanoma. Given the limited evidence base to guide management, they provide clear guidance based on the best available evidence and expert consensus to support patient care.

The guideline, originally published in 2018, underwent a comprehensive review of the available evidence. The guideline update was chaired by Mr Myles Smith, Consultant Surgical Oncologist at The Royal Marsden Hospital, with a multidisciplinary Guideline Development Group bringing together leading specialist expertise from across the relevant fields, alongside patient representatives.

Mr Myles Smith, Consultant Surgical Oncologist and Chair of the Guideline Development Group, explained the importance of the updated guideline and the key changes to the recommendations:

Ano-uro-genital mucosal melanoma is rare, biologically distinct from cutaneous melanoma and frequently diagnosed at an advanced stage. Its rarity means that the evidence base is limited and patients have historically experienced variation in diagnosis, treatment and follow-up. This updated UK guideline brings together the best available evidence and multidisciplinary expert consensus to provide a clearer and more consistent framework for the care of patients with anorectal, vulvo-vaginal and urogenital mucosal melanoma.

The guideline contains important updates across the whole patient pathway.

It strengthens recommendations on the recognition and referral of both pigmented and non-pigmented lesions, pathological assessment, molecular profiling and staging, including the use of PET-CT and brain imaging. It also provides updated guidance on surgery, lymph-node assessment, adjuvant and neoadjuvant systemic therapy, surveillance, and the management of metastatic and  oligometastatic disease.

A central theme is that treatment should be individualised and agreed through both the specialist melanoma and anatomical-site multidisciplinary teams. Surgery should be proportionate, with careful consideration of organ preservation, function, quality of life and patient preference, rather than an automatic move towards radical resection. Sentinel lymph-node biopsy should be considered selectively, where it is technically feasible and likely to influence management.

The guideline also places greater emphasis on patient-focussed care, including access to reliable disease-specific information, clear coordination between specialist and primary-care teams, and support for psychological, psychosexual and survivorship needs.

We hope that the guideline will reduce variation in practice, support informed discussions between patients and clinicians, and strengthen collaboration between specialist centres. It also identifies major areas of unmet need, particularly the development of better staging systems, increased inclusion of patients with mucosal melanoma in clinical trials and further evaluation of novel treatments.

Alongside the guideline, the care pathways and patient information booklets have also been reviewed and updated. These supporting resources are designed to help healthcare professionals navigate the diagnosis and management of ano-uro-genital mucosal melanoma, while providing patients and their families with clear and accessible information about their care.

Philippa Cox, a patient representative, reflects on the value of the patient information booklets:

“I would like to congratulate everyone in these. They are very comprehensive and written with patients in mind avoiding too many medical terms. I would have welcomed these when I was first diagnosed, and it is great to know that future patients will have good reference materials to help them.”

Melanoma Focus would like to thank Mr Myles Smith and all members of the Guideline Development Group, including the patient representatives, for their time, expertise and contribution to this important work.

The work was commissioned by Melanoma Focus, and the updated guideline and supporting resources are now available on the Melanoma Focus website.