www.melanomafocus.com Head and Neck Mucosal Melanoma Information for patients and carers Introduction Head and Neck The information in this leaflet relates specifically to melanomas of the head Mucosal and neck mucous membranes. The leaflet summarises a guideline (melanomafocus. Melanoma com/activities/mucosal-guidelines/mucosal- melanoma-resources) developed by experts in the field to advise cancer specialists who treat patients with this condition and is based upon the best evidence available. Skin What is it? cancers can also develop in the same areas of Melanoma develops if there is uncontrolled These melanomas are different in several the body, in the skin rather than in the mucous growth of melanocytes, the cells responsible ways from skin melanomas. For example, membranes. These are known as cutaneous for pigmenting (darkening) the skin. Mucosal while the risk of getting skin melanoma is melanomas and are not covered by this melanoma is a kind of melanoma that increased by too much exposure to the sun, guideline. If you have been diagnosed with occurs in mucous membranes. These are there appears to be no link between sunlight a skin (cutaneous) melanoma please refer to the moist surfaces that line cavities within and mucosal melanomas. No specific causes the NICE guideline (nice.org.uk/guidance/ the body. Mucosal melanomas can occur in or links with lifestyle have been found for ng14) and the other organisations listed at the the mouth (oral mucosal melanoma), nasal mucosal melanoma and as far as we know end of this leaflet. passages (sinonasal mucosal melanoma) there is nothing you can do to prevent it. or very occasionally the throat (pharngeal/ It also appears that mucosal melanoma The number of medical terms has been kept laryngeal mucosal melanoma) as well as in tumours are different from skin melanoma to a minimum. If you come across a term you other parts of the body including in the eye tumours. This means that some treatments don’t understand, please see the definitions or around the genital and rectal areas. This for skin melanomas may not be as effective and abbreviations section at the end of the leaflet discusses mucosal melanomas of the for mucosal melanoma and the outlook document or ask your consultant or nurse. head and neck. There are other guideline (prognosis) for mucosal melanomas is not as documents by Melanoma Focus which good as for skin melanomas. The prognosis cover eye melanomas (melanomafocus. will be different depending on whether the com/activities/um-guidelines-resources) tumour can be fully removed surgically and and ano-uro-genital mucosal melanomas whether it has spread. If you would like more (melanomafocus.com/activities/mucosal- information about your individual situation, guidelines/mucosal-melanoma-resources). you should discuss this with your clinical team. Mucosal melanomas are very rare: in the Surveillance Epidemiology and End Results (SEER) database which registered melanomas over 22 years, only about 1 melanoma in 100 was a mucosal melanoma. The majority of melanomas grow within the skin. Mucosal melanomas can be more complicated to treat than skin melanomas as they are often diagnosed later. This is because they are in less visible places and because they are often not pigmented (darker), which makes them even more difficult to spot. B 1 What are the symptoms? Going to the hospital Diagnosis, staging and prognosis Questions you may wish to The most common places to have a mucosal Tests and examination The clinical team will make a diagnosis based melanoma of the head and neck region are on the results of your tests and medical ask about your diagnosis and At the hospital the consultant will examine in the nose, including the sinuses, or the examination. If you are diagnosed with a prognosis you, including the lump, and your neck. You mouth. More uncommonly they occur in the mucosal melanoma, your cancer will be should also have a CT or MRI scan and a What are you looking for in the larynx. As with skin melanomas, there may evaluated according to a process known biopsy where they take a small sample of the biopsies? be an area which is pigmented (darker) but as staging. The stage indicates whether the lump to examine under a microscope. What is the difference between a CT this is NOT always the case. The symptoms cancer has spread in your body and, if so, scan, MRI scan and a PET scan – what are those often associated with less serious If the consultant makes a diagnosis of head where. This staging process will help you and do each show? conditions and include: and neck mucosal melanoma, you would the cancer team make decisions about your normally have a PET-CT scan of your body to future treatment. What stage is my cancer at and what is ● Nosebleeds out of one nostril only that check whether the cancer has spread. There my prognosis? have occurred several times over at least a For the staging, the UICC (Union for are several specific genes which have been 3-week period International Cancer Control: www.uicc.org) Are any gene mutations involved in my identified that may be involved in some, but TNM staging system is used. In addition to cancer? ● Blockage of one nostril, which nose drops not all, mucosal melanoma tumours. The other information the team should record in What is the best treatment available haven’t helped and which have occurred pathologist should test the tissue sample particular: several times or for a long time over at least from the biopsy to see if one of these to me? a 3-week period identified genes is involved in your cancer as ● Location of the primary (original) tumour What sort of health problems might I this will help decide the best treatment for ● have? And what are the plans I need to ● A lump on the tongue or in the mouth Primary Tumour size and extent of tumours you, now and in the future. put in place to be prepared? that may or may not bleed or be darkly ● Lymph Node involvement (whether or not pigmented that is growing bigger and has the cancer has spread to the nearby lymph What supportive services are available been there for at least 3 weeks nodes (also called glands) to me and may I have their contact details for future reference? ● A mouth ulcer which hasn’t got better in ● Presence or absence of distant Metastasis 3 weeks (whether or not the cancer has spread to Can you recommend leaflets or distant areas of the body). websites with information on my ● Unexplained hoarseness which hasn’t got condition? better in 3 weeks The cancer team will make a prediction of the outcome of your cancer – your prognosis Are there any clinical trials available ● Swollen glands in the neck which haven’t – based on the results of your tests and that I might be suitable for? got better in 3 weeks examination and on what happened to others If you have any of these symptoms and your who have had similar cancers. GP cannot find another cause, you should be If you and/or a relative or carer want to have referred quickly (normally within about two a full discussion about your prognosis, make weeks) to a specialist head and neck clinic this clear to someone from the cancer team. with experience of this condition, and usually It will mean that your appointments will be to a head and neck surgeon, for tests and more informative and will enable you to be further evaluation. It is most important that the more involved in planning your treatment team you see regularly treats patients with and other aspects of your life. On the other this condition. As it is so rare, you may need to hand you may wish to take it ‘one step at a travel to a specialist centre rather than attend time’. Whatever your decision, you will be fully your local hospital. supported by the cancer team. 2 3 ● How to make an appointment with the Adjuvant (Extra) therapy consultant quickly should you run into Questions you may wish to Some questions you may wish problems You are likely to be offered adjuvant (extra) ask about your visits to ask about your treatment therapy to reduce the likelihood that ● About referral to support services (for How often will I have appointments at How should I expect to feel after my the cancer comes back after it has been example, supportive care services and the cancer centre? surgery? removed entirely by surgery. (A ‘belt and support groups) should you need them at braces’ approach!). Recently there have been What sort of support will I need at any point in your treatment What will the recovery time be? advances in the treatment of skin melanomas these appointments? ● Written information Will I be able to carry on with life as with immunotherapy. Immunotherapy How long will I be at the centre each normal? stimulates your body to fight the cancer. time? What will be the effects of my surgery? Immunotherapy doesn’t work for everyone What further signs and symptoms Treatment and there can be potentially severe, but What symptoms should I look out for, should I look out for? manageable, side effects. The first line of treatment for a mucosal indicating whether the surgery has What symptoms should I report melanoma is surgery, which should be done worked or not? However, because mucosal melanomas are urgently? by a surgeon who is very experienced in so rare, scientists are still uncertain whether What support will I need after surgery? complex head and neck surgery and is based these treatments work in the same way as How and who should I contact if I need in a centre where there is support from an Am I likely to need rehabilitation? with skin melanomas.