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Head and Neck Mucosal Information for patients and carers Introduction Head and Neck The information in this leaflet relates specifically to 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 where they take a small sample of the ? 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 ●  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 which hasn’t got better in ● Presence or absence of distant 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? ? 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 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. You may be asked if to do so urgently? experienced team. Will I need adjuvant therapy? If so, you would like to enter a clinical trial to help doctors answer this question. As doctors learn If the cancer hasn’t spread beyond the what is the reason for this and what will more, you may be offered immunotherapy primary site, it is likely that the tumour will be it involve? or other targeted therapies. (See definitions removed by surgery. If the tumour is in your What are the side-effects of adjuvant below for more information.) nose or throat it is more difficult to access treatment that I may experience? What to expect from than a mouth cancer, and the operation Similarly, you may be offered adjuvant your care should, if possible, be done endoscopically radiotherapy if there is a very high risk of A specific specialist cancer team will look (‘key-hole surgery’) to minimise any problems. local recurrence in your case but there is no after you during your treatment. As this is If possible, the surgeon will biopsy the lymph evidence to show that it benefits everyone. a rare cancer which has similarities to both nodes near the tumour. In any case, the aim skin and other head & neck cancers, your of surgery is also to remove a little of the care needs the expertise of both the skin and surrounding healthy tissue to ensure that all Rehabilitation the head & neck oncologists. The guideline of the cancer is removed. This is called having If the surgery has affected your teeth or eyes advises teams on specific ways in which they ‘clear margins’. In planning the operation, or your appearance, you should be referred should work together. the consultant should discuss your current health and how the surgery may affect your to the appropriate services. You should be When discussing your diagnosis and quality of life. If it is likely to have an impact, offered a referral to special psychological treatment you should be told: the consultant should discuss other treatment services before and after surgery to talk through your condition and your emotions, ● The name and contact details of your options with you to agree what is best for you. should you wish. consultant and of your cancer clinical nurse If the cancer hasn’t spread and the margins specialist are clear, this may be the end of your treatment (see Rehabilitation, page 5) or, ● Who your key worker is (this person is depending on the stage and tumour, you may your first point of contact should you have be offered adjuvant therapy (see below). questions or problems and is usually the cancer clinical nurse specialist. You also need to make sure you are given the contact details of the person to contact if your keyworker isn’t available) 4 5 After treatment If your cancer recurs or Questions you may wish to spreads (metastasis) After your initial treatment, you should be offered regular follow-up appointments at the ask about your treatment and If the cancer recurs (returns near the same hospital to check that no cancer has returned, prognosis spot as the original cancer) or it has spread either to the original site or elsewhere in your Is there a , targeted elsewhere you may be offered systemic body. therapy or radiotherapy available in my therapy similar to what you may have had before (see Adjuvant (extra) therapy, above). You should be given information on how to situation? As described above, new treatments are make an appointment quickly at any time If so, what is the likelihood that it will constantly being developed and your after your treatment if you are concerned. reduce my symptoms and/or extend consultant should tell you about their success my life? The schedule recommended in the guideline rates, as well as the risks and benefits in if you stay well is: Is it available on the NHS? your particular case. The cancer team should discuss the options with you and the Are there side-effects with this availability of any clinical trials you could YEAR 1 treatment and, if so, what are they? enter. There is little evidence that the routine Examination by the doctor: every 6-8 weeks What clinical trials are available? use of chemotherapy or bio-chemotherapy Scan to make sure the cancer hasn’t spread: What is the aim of the clinical trial in is effective in the treatment of metastatic every 3 months question? mucosal melanoma and it is not currently Brain scan: every 6 months* recommended by the guideline. If you would like to read more about the What support will I need while on this advantages and disadvantages of having treatment? Depending on numerous factors relating to YEARS 2–3 scans, refer to the NICE option grid set out in your tumour, you may be offered surgery or How will I be able to tell whether it’s Examination by the doctor: every 3 months skin cancer guideline: nice.org.uk/guidance/ radiation therapy. Your consultant will discuss working or not? Scan to make sure the cancer hasn’t spread: ng14/resources/followup-with-regular-ct- these types of treatment with you. If it is not working, how soon can I move every 6 months scans-yes-or-no-pdf-250598416. on to something else? Following treatment for a recurrence or Brain scan: every 6 months* You should be told how to make an metastasis, you should be offered regular appointment quickly at the clinic if you are Will this treatment prolong my life? appointments as detailed on page 6. concerned at any time in the future. Will I have a reasonable quality of life YEARS 4–5 If the disease progresses, there are other while on this treatment? Examination by the doctor: every 6 months options to make you more comfortable. Scan to make sure the cancer hasn’t spread: Are surgery or radiation therapy Refer the NICE guideline Cancer of the every 12 months options for me? upper aerodigestive tract: assessment and Brain scan: every 12 months* management in people aged 16 and over (NG36) – nice.org.uk/guidance/ng36 for further information on managing symptoms After 5 years the consultant may see you once and to Palliative and supportive care in a year or discharge you, since the risk of the head and neck cancer – (cambridge.org/ cancer returning reduces with time. But you core/journals/journal-of-laryngology-and- should have rapid access to advice if you are otology/article/palliative-and-supportive- concerned.. care-in-head-and-neck-cancer-united- *You may be offered an MRI scan of your kingdom-national-multidisciplinary-guidelin sinuses at the same time as the brain scan. es/543AF37F96D5A88E8123EA86320F792F/ core-reader).

6 7 Sources of information The American Joint Committee on Cancer Immunotherapy CT SCAN (AJCC), which publishes the staging manual Also called biologic therapy or bio-chemotherapy, Computerised Tomography (CT) takes x-rays from and support stimulates the patient’s own immune system to fight different angles and the computer then puts them in use has a patient leaflet explaining staging cancer. There is very helpful information here: together as a three-dimensional picture. See the Unfortunately, as mucosal melanoma is so here: cancerstaging.org/CSE/Registrar/ about-cancer.cancerresearchuk.org/about-cancer/ Cancer Research UK website link above and nhs.uk/ rare, there are no websites dedicated to Documents/needtoknow.pdf. cancer-in-general/treatment/immunotherapy/ conditions/CT-scan for more information. what-is-immunotherapy information about this condition. and MRI/MR cancerresearch.org/immunotherapy/what-is- Magnetic Resonance Imaging (MRI or MR) takes Melanoma Focus (melanomafocus.com) immunotherapy. pictures of the body using magnets and radio waves. is a charity that commissions and funds These show up soft tissues such as the bowel, Definitions and abbreviations Lesion melanoma research, while providing An area of tissue that isn’t normal. This term can be liver, lungs etc. better than CT scans. The scan can support & information for patients, carers Adjuvant therapy used when it is uncertain whether the area is cancer take up to 1½ hours. See the Cancer Research UK website link above and nhs.uk/conditions/mri-scan and healthcare professionals. It funded this Adjuvant therapy is treatment in addition to that (malignant) or not (benign). used to treat the initial cancer. The aim is to reduce for more information. leaflet and the associated guideline for health Lymph Nodes the possibility that the cancer will come back after it Lymph nodes are often the first place the cancer PET-CT professionals, on which this leaflet is based. It has been removed entirely by surgery. spreads to. Fuller explanation of lymph nodes and This combines a CT Scan (see above) with a is here ****** Biopsy techniques cancer is here: cancer.org/cancer/cancer-basics/ Positron Emission Tomography (PET) scan. A mildly lymph-nodes-and-cancer. Most available information is not specific to A biopsy is when a piece of the abnormal tissue radioactive substance is injected, which shows up parts of the body where cells are more active. is removed so the cells can be examined under a Metastasis/Metastatic Cancer mucosal melanomas, but much of the general That is, where a cancer might be growing. See the microscope to determine whether it is cancer and if Metastasis is when cancer cells break away from information on cancers of the head and neck Cancer Research UK website link above and nhs.uk/ so what type. the original (primary) site, travel through the blood is informative and useful. or lymph system, and form a new tumour in other conditions/pet-scan for more information. There are many ways of taking a biopsy. The ones organs or tissues of the body. The new, metastatic Staging British Association of Head & Neck mentioned in this leaflet are listed here. tumour is the same type of cancer as the primary Staging is an estimate of how much cancer there tumour. For example, if mucosal melanoma spreads Oncologists has a patient information area – Sino-nasal MM about-cancer.cancerresearchuk. is and where is located. Staging is used to plan to the liver, the cancer cells in the liver are mucosal bahno.org.uk/patients_area/patient_links. org/about-cancer/nasal-sinus-cancer/getting- treatment and future options. Fuller explanation melanoma cancer cells, not liver cancer cells. aspx. diagnosed/tests-diagnose here: about-cancer.cancerresearchuk.org/about- Palliative care support services cancer/nasal-sinus-cancer/stages-grades/about Oral – MM about-cancer.cancerresearchuk.org/ Cancer Research UK has a great deal of More information on what forms of home care are and about-cancer/mouth-cancer/getting-diagnosed/ available can be found at: nhs.uk/conditions/ about-cancer.cancerresearchuk.org/about-cancer/ information, including treatments and living tests-diagnose social-care-and-support/home-care mouth-cancer/stages-types-grades. with cancer, which is relevant to head and See NHS Choices, from which this information was and Targeted therapy neck cancers. taken, for more detail nhs.uk/conditions/biopsy/. cancerresearchuk.org/about-cancer/melanoma/ Targeted therapy, like chemotherapy uses drugs to advanced-melanoma/support-home-for-you- treat cancer. There is some very good information Mouth cancers: CORE BIOPSY your-family. cancerresearchuk.org/about-cancer/mouth- For a core biopsy, the area is numbed with a local here: about-cancer.cancerresearchuk.org/about- Pigmentation cancer/cancer-in-general/treatment/targeted- cancer anaesthetic, a wide hollow needle is inserted and a sample of the cells taken. Pigmentation is colouring of the skin which can be cancer-drugs/what-are-targeted-cancer-drugs. Sino-nasal cancers: different shades of brown. Cancerous cells may EXCISION BIOPSY start producing more pigment, resulting in dark cancerresearchuk.org/about-cancer/nasal- An excision biopsy aims to remove the lesion or patches. However, some mucosal melanomas are ABBREVIATIONS sinus-cancer lump entirely. It will be examined to determine not pigmented. whether more treatment is needed. CNS Cancer Clinical Nurse Specialist Nasopharyngeal cancers: Scans CT Computed tomography FINE NEEDLE ASPIRATION For more information on the tests mentioned in this cancerresearchuk.org/about-cancer/ MRI Magnetic resonance imaging A fine-needle aspiration (FNA) biopsy is similar to a leaflet see the Cancer Research UK website link: nasopharyngeal-cancer core biopsy but isn’t as deep and may not need a PET Positron emission tomography local anaesthetic. When the needle is in position, it Sino-nasal MM about-cancer.cancerresearchuk. SLNB Sentinel lymph node biopsy Macmillan (macmillan.org.uk) provides will cut out a small sample of tissue. org/about-cancer/nasal-sinus-cancer/getting- support for people who have cancer. diagnosed/tests-diagnose SENTINEL NODE BIOPSY NHS Choices (nhs.uk/pages/home.aspx) Sentinel node biopsy is a test to determine whether Oral – MM about-cancer.cancerresearchuk.org/ about-cancer/mouth-cancer/getting-diagnosed/ has information on cancer treatments and there are cancer cells in the lymph nodes around your groin. The consultant will carry out a small tests-diagnose other aspects of care. operation to remove some tissue to be tested. There is more information in the links above.

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