Mucosal melanoma

Mucosal melanoma is a rare form of melanoma that occurs in mucous membranes. These are the moist surfaces that line the cavities within our body. Melanomas that appear on mucous membranes and the skin (cutaneous melanoma) start when melanocytes turn cancerous. Apart from this shared origin, mucosal melanoma and skin melanoma differ substantially in their behaviour and biology.

For example, a known risk for developing skin melanoma is a history of exposure to the sun, especially during childhood. However, this does not increase the risk of mucosal melanoma. In fact, there are presently no risk factors, including family (genetic) susceptibility, or environmental causes like UVB exposure that can be linked to mucosal melanoma in research studies.

Mucosal melanomas can also be more complicated to treat than skin melanomas. One significant reason for this is they are often diagnosed at a later stage. They tend to occur in less visible places and are not always pigmented (darker), which makes them even more difficult to spot.

Doctor talking with patient

Types and locations of mucosal melanomas

There are several types of mucosal melanoma and we have produced dedicated guides for patients and carers on the signs, symptoms, diagnosis, staging and treatment of them that you can access below. Please note that we have separate resources for uveal melanoma (melanoma of the eye).

Below you’ll find guides covering:

  • Head and Neck mucosal melanomas
  • Anorectal mucosal melanoma
  • Penile mucosal melanoma
  • Vulvo-vaginal mucosal melanoma

 

Update of the Ano-uro-genital Mucosal Melanoma Guideline – Invitation for Expressions of Interest

Melanoma Focus has begun preparatory work to set up a Guideline Development Group to update the Ano-uro-genital Mucosal Melanoma Guideline which covers anorectal mucosal melanoma, penile mucosal melanoma and vulvo-vaginal mucosal melanoma.

The Guidelines Group will be led by Mr Myles Smith, Surgical Oncologist, with project management and methodological support and funding by Melanoma Focus. It is really important and invaluable to have patient or carer representation on the group to give their perspective. The update will only revise the topic areas where there has been new which may change the current recommendations. Having reviewed the literature, it appears that the areas that may require updating are those of:

  • Molecular testing
  • Surgery
  • Prognosis/Staging
  • Systemic treatment -adjuvant and metastatic
We looked for the following:
  • Medical oncologists with an interest in mucosal melanoma
  • Pathologist with an interest in mucosal melanoma and tumour genetics
  • Surgeons with interests in each of the anatomical sites (anorectal, vulvo-vaginal or penile)
  • Patient or carer representatives

The Guideline Development Group consists of:

  • Mr Myles Smith, (Chairman) Surgical Oncologist
  • Dr Adrian Bateman, (Seconded) Consultant Histopathologist
  • Dr Ruth Board, Consultant Medical Oncologist
  • Mr Owen Heath, Gynaecological oncologist
  • Prof Asif Muneer, Consultant Urological Surgeon and Andrologist
  • Ms Karen Nugent, Colorectal Surgeon
  • Dr Miranda Payne, Consultant Medical Oncologist
  • Dr Guy Burkill, Consultant Radiologist
  • Dr Nicos Fotiadis, Interventional Radiologist
  • Mrs Nancy Turnbull, Project Manager
  • Andrew Le Marchand, Patient Representative
  • Philippa Cox, Patient Representative

Guideline Development Methodology Manual

Head and Neck mucosal melanomas

The most common types of mucosal melanoma occur in the head and neck region and can be found in the following locations:

  • Oral mucosal melanoma – These arise in the oral cavity in the mouth
  • Sinonasal mucosal melanoma – These occur in the nasal passages of the nose
  • Pharngeal/ laryngeal mucosal melanoma – This is the least common melanoma found in the head and neck, and affects the throat

The signs, symptoms of the different types of head and neck mucosal melanoma vary and are often associated with lots of other minor conditions. An example is a nose bleed that has not stopped after 3 weeks, or a single blocked nostril that does not improve with sinus drops, in the case of sinonasal mucosal melanoma. They rely on your GP eliminating the many other harmless causes of these symptom

Subsequently, you may be referred to a head and neck clinic that deals with mucosal melanoma. For further information on head and neck melanoma access our our dedicated web resources and guide.

Anorectal mucosal melanoma

This type of mucosal melanoma affects the areas in and around the anus, or the rectal cavity. It is very rare and the signs and symptoms of anorectal mucosal melanoma are similar to other cancers in the bowel or colon area. They can include bleeding from the rectum (back passage), pain, swelling or a lump. You may feel an urgent need to empty your bowels, although you may not be able to. Your GP may refer you to a colorectal surgeon.

For further information on anorectal mucosal melanoma, including diagnosis and treatment access our dedicated web resources and guide.

Penile mucosal melanoma

This kind of mucosal melanoma affects the glans, foreskin, shaft or urethral meatus (gap between the urethra and tip) of the penis. It is the most rare form of mucosal melanoma. Symptoms can be similar to other forms of cancer in this area. These can include bleeding, pain, unusual discharge, difficulty urinating (passing water), a swelling, lump or ulcer. The area may be pigmented (darker), but this is not always the case. For more information access our dedicated web resources and guide below.

Vulvo-vaginal mucosal melanoma

This sort of mucosal melanoma can occur in the vulva or vaginal area. The symptoms are similar to those associated with other cancers found in this area of the body. You may have a lump, a sore area and/or bleeding. You may have trouble urinating (passing water). As with skin melanomas, there may be an area which is pigmented (darker), but this is not always the case. For more information access our dedicated guide and resources below.

Further resources:

The Melanoma Stages and Treatment Patient Guide has a variety of resources for patients, including information about immunotherapy treatment along with detailed advice to support your health and wellbeing exploring topics such as exercise and melanoma, fatigue and mental health and melanoma. 

Patient Stories

Philippa’s Story:

 

On Christmas day in 2021, Philippa found a small lump in her vulva and after being referred by her GP, was diagnosed with vulval mucosal melanoma. During January 2022 she had an initial operation to remove this and in March 2022 she had a single lymph node removal. Following on from this in May 2022 a PET scan revealed metastatic lymph node outside of the pelvis and Philippa started double immunotherapy treatment (ipilimumab+nivolumab). She underwent further surgeries and her latest scan shows she is cancer-free.

Read Philippa’s full story

Jonathan’s Story:

 

During September 2020 Jonathan was diagnosed with stage 2 ano-uro-genital mucosal melanoma,  and in November 2020, he underwent his first surgery to remove this. Unfortunately, the cancer had not been fully removed with clear margins and the operation had to be repeated. Jonathan has a rare mucosal melanoma which has further spread, and additional surgeries and treatments have continued, and he is now looking into alternative treatment options.

Read Jonathan’s full story

Support: Facebook Group

Mucosal Melanoma Warriors is a private Facebook support group for people with mucosal melanoma or carers of people with mucosal melanoma. It has over 1,000 members and if you have a Facebook profile you can request to join. Many people find it a huge comfort to connect with others in similar situations, however, we understand that this route of support does not benefit all as everyone’s experience is different. There is always the option to join the group and leave at a later point if your needs are not met.