Mucosal melanoma guidelines

Mucosal melanomas are rare, representing only about 1-2% of all melanomas. 55% of all primary mucosal melanomas occur in the head and neck region, with the nose and paranasal sinuses being the most common sites. Surgery at all stages frequently involves complex decisions about risk and benefit, and the value of adjuvant treatment – drug therapy or radiotherapy – is unclear.

Medical treatment of cutaneous melanoma is evolving rapidly and its relevance to this group of patients requires clarification. There is no agreement about diagnostic imaging techniques or follow-up protocols. There is therefore a need for clinical guidance in this area.

55% of all primary mucosal melanomas occur in the head and neck region

As the principal UK melanoma charity, Melanoma Focus leads in the development of clinical guidelines for rare forms of melanoma. The initiative to produce the Head & Neck Mucosal Melanoma Guidelines and the and Ano-Uro-Genital Mucosal Melanoma Guidelines follows the charity’s development of the Uveal Melanoma Guidelines.

The Ano-uro-genital Guideline was completed in 2017 (updated in 2026), followed by the Head and Neck Guideline in 2020. Each was subject to an exhaustive consultation process involving a large number of organisations, healthcare professionals and patient representatives. Melanoma Focus is extremely grateful to the members of the Guideline Development Groups (GDGs) and to their Chairmen, respectively the late Professor Martin Gore CBE, Professor Kevin Harrington and Mr Myles Smith for their generous donations of skill, time and effort.

Head & Neck Mucosal Melanoma Guidelines

A GDG from the fields of surgery, medical oncology, clinical oncology, radiology, pathology and nursing, as well as patient and carer representatives, began work in mid-2018 to produce a national clinical guideline for head & neck mucosal melanoma. The group, led by Professor Kevin Harrington from The Institute of Cancer Research, with project management and methodological support provided by Mrs Nancy Turnbull, the Project Manager, and funding by Melanoma Focus

Follow the individual links below for guidelines:

head and neck guidelines diagram

Ano-uro-genital Mucosal Melanoma Guidelines

A GDG was formed in 2016 to produce UK clinical guidelines for ano-uro-genital mucosal melanoma on behalf of Melanoma Focus. The group consisted of clinicians specialising in medical & clinical oncology, surgery, gynaecology, radiology and histopathology, as well as a nurse and a patient representative. It was chaired by the late Professor Martin Gore CBE, with project management and methodological support provided by the Project Manager, Mrs Nancy Turnbull.

In 2026 the guideline was updated following a review process undertaken between 2024-26. The updated GDG was chaired by Mr Myles Smith, Consultant Surgical Oncologist, with project management and methodological support from Nancy Turnbull and Danielle Ohana and with funding from Melanoma Focus.

This update involved a comprehensive review of the evidence base, with recommendations revised where required to reflect changes in evidence and clinical practice. The main areas of update include staging, surgery, surveillance and systemic treatments. The updated guideline underwent a comprehensive consultation process with relevant stakeholders, including healthcare professionals and patients. Feedback received was considered in the final version of the guideline.

Follow the individual links below for the guideline and associated documents:

My Myles Smith, chair of the Ano-uro-genital Mucosal Melanoma Guidelines, made this statement following the completion of the updated guidelines 2026:

‘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.’

 

Professor Kevin Harrington, Chair of the Head & Neck Mucosal Melanoma Guideline Development Group, said:

‘Head & Neck Mucosal Melanoma (HNMM) is a rare condition that can be devastating and life-changing for patients, as well as for their families and friends. However information about the disease is scarce and mostly based on experience of melanoma in general, or of the common types of cancer that involve the head and neck. There have been very few randomised controlled trials that involve patients with HNMM when compared with melanoma affecting the skin. Therefore, there is only a small evidence-base with which to work. In the face of these challenges, the GDG was forced to draw on evidence that came almost exclusively from observational studies. In reviewing and evaluating these sources, a series of PICO questions was used to impose the necessary scientific rigour on the process.

The product of these exhaustive deliberations – the HNMM Guideline – will endure for many years and will be updated regularly under Melanoma Focus auspices. It will help clinicians in the UK and beyond to understand how to diagnose and treat this often deadly disease. These conclusions are also intended for use by patients, with a lay version written in non-scientific language produced to accompany the main document.

Especially in a situation where there was a dearth of hard scientific evidence, the skill of the GDG members was paramount – both in interpreting the limited data and in drawing on their own clinical experience of treating people suffering from this disease. The members of the group gave freely of their time in a complex task that took them away from their already busy working lives. They did this generously and on an entirely pro bono basis, aided by valuable input from patient and carer representatives.

I wish to record my thanks to all those involved – clinicians, nurses, patients, as well as to the many organisations and individuals who contributed their wisdom and knowledge in reviewing our findings during the consultation process. I also wish to extend my thanks to the team at Melanoma Focus for having the vision to commission these guidelines and for its support in facilitating meetings and during the process of drafting the guideline documents.’

COPYRIGHT NOTICE: ALL documents are Copyright © 2018, 2020 & 2026 Melanoma Focus. Permission is granted to reproduce them, with attribution to Melanoma Focus, for personal clinical and educational use only. Commercial copying or lending is prohibited.

Further resources

The original mucosal melanoma guidelines were published in the following peer-reviewed journals:

Ano-uro-genital mucosal melanoma UK national guidelines, European Journal of Cancer, Volume 135, 2020,22-30, https://doi.org/10.1016/j.ejca.2020.04.030.

The full text PDF version of the ano-uro-genital mucosal melanoma paper is available to download here

The full text PDF version of the meta-analysis of radical versus primary resection in anorectal melanoma is available download here

Head and neck mucosal melanoma: The United Kingdom national guidelines. Eur J Cancer. 2020 Oct;138:11-18. doi: 10.1016/j.ejca.2020.07.017. Epub 2020 Aug 20. PMID: 32829104.

The full text PDF version of the head and neck mucosal melanoma paper is available to download here

Guideline development note: These Guidelines were developed in accordance with the Melanoma Focus Guideline Development Methodology Manual. The methods comply with the AGREE II criteria for the rigorous development of evidence-based guidelines and were accredited by NICE. This accreditation was awarded as a mark of quality between 2017 and 2024, before NICE closed its Accreditation Programme in July 2024.