The Melanoma Patient Decision Aid

This is a decision aid for people who have been diagnosed with cutaneous melanoma – a type of skin cancer. It is designed to help you understand the options for treatment, helping with any decisions you might have to make with your specialist healthcare team. This PDA does not cover ocular or mucosal melanoma.

All cancers can be divided into different stages depending on the original size of the primary tumour and whether there is any spread of the disease. The information provided in this PDA has been split up accordingly and so only some of the information will be relevant to you. The different stages of melanoma are described below.

You should also be aware that you may not be suitable for all the procedures and treatments outlined in the PDA. There may also be variation in some of these due to local policies and where there is only limited clinical evidence to support one option over another.

Users are also able to print off each stage of the PDA. Should you not have access to a computer or printing facilitates, then please get in touch with Melanoma Focus.

Melanoma is a cancer of the pigment-forming cells called melanocytes. These cells are present throughout the body. Melanoma that arises from the skin, as opposed to in other places such as in the mucosa or eye, is known as cutaneous and is the most common type of melanoma. If it is treated early, the outlook is usually very good.

Cutaneous melanomas can arise in or near to a mole, but most will occur on skin that appears quite normal. They develop when the melanocytes become cancerous and multiply in an uncontrolled way. These malignant cells can invade deeper into the skin and may also spread to other areas such as the local lymph nodes or through the blood stream to more distant parts of the body.

There are recognised risk factors for developing melanoma which are listed here.

Melanoma is the fifth most common form of cancer in the UK.[1] There were around 15,400 new cases of melanoma in the UK in 2014. Melanoma diagnoses have increased significantly since the 1970s.[2] Changing behaviours in exposure to sunshine and UV light are thought to be a major factor in this increase.[3]

Over a third of all people with melanoma are under the age of 55, and it is now the second most common cancer among 15-34 year olds.[4] More than two young adults are diagnosed with melanoma in the UK every day.[5]

The diagnosis of melanoma is usually made by a skin doctor (dermatologist) who has examined the skin and confirmed by the pathologist (a doctor who is trained to examine samples taken from the body using a microscope) who looks at the melanoma after it has been removed under local anaesthetic. Your healthcare professional will advise you which stage your cancer is at. There are four possible stages: one (I), two (II), three (III), and four (IV). The full staging of the melanoma may not be known at the time of the initial diagnosis, as additional tests (for example analysis of the lymph node or a scan) may be needed. This will help determine the most appropriate treatment for your condition and will also help to determine your prognosis.

The stage of the disease is based on how thick the melanoma is and whether it has spread to other parts of your body. Most people are diagnosed with melanoma at an early stage (I or II) before it has spread and it is unlikely to return. Melanoma can also be stage III or IV when it is initially diagnosed. Less commonly, melanoma may be diagnosed as having spread and the site on the skin where the cancer originated from cannot be found (called unknown primary melanoma).

Please note that a new staging system for melanoma will be coming into force on 1st January 2018. So the information below may change. As such, this section will be updated following its implementation.

More information on the new staging system can be found here.

Depending on the stage of your melanoma, there might be one or two options for treatment, or there might be several options to choose from. Your healthcare professional will talk these through with you, but this tool is designed to help with your discussions and ensure that you ask the right questions.

The main options for melanoma treatment in stages I, II and III, and after the initial biopsy that makes the diagnosis, include:

  • Wide local excision – This is the surgical removal (excision) of a wider area of skin around the site of the melanoma. At the same time a sentinel lymph node biopsy may be performed. This is the removal of the lymph node(s) that is most likely to have been affected by the melanoma, although it is not a treatment. The aim of this procedure is to find out if there has been any spread to the local nodes. It is only done if the local lymph nodes at the outset appear to be of normal size and shape. If the lymph nodes appear abnormal then a scan may be performed and a biopsy taken with a needle. If this shows melanoma then a sentinel node biopsy will not be needed and instead you will be offered a lymph node clearance.
  • Lymph node clearance (completion lymphadenectomy) – This is where all the local lymph nodes are removed if they have been shown to be involved with the cancer. For example, as a second operation after the sentinel lymph node biopsy or if a needle biopsy of the lymph nodes has already shown melanoma. If the healthcare team is worried about the risk of spread of the melanoma then a scan, such as a CT scan or PET/CT scan may be performed. The whole body is scanned and a separate scan of the head may also be needed – for example an MRI.

After these procedures, other treatments might be appropriate, including:

  • Drug therapy to reduce the risk of future return of the cancer. (At the time of writing this PDA this is not a common option in the UK at stages I, II & III.)
  • Entry into a clinical trial of new therapies to see if they can reduce the risk of the return of the melanoma.
  • Radiotherapy to reduce the risk of the return of the melanoma specifically in the local area of the scar and lymph nodes. This is not commonly needed.

In addition you will also be offered regular follow up visits and depending on the stage of the melanoma you may also be offered regular scans.

For melanoma that has spread to more distant areas of the body (stage IV) or if the melanoma is impossible to remove by an operation (unresectable stage III) options can include:

  • Therapies that enhance the immune system to allow it to recognise and hopefully reject the cancer – this is known as immunotherapy.
  • Targeted therapies that work against certain sub-types of melanoma to cause them to shrink.
  • Surgery to remove any secondary tumours that have developed.
  • Radiotherapy to help with pain and other symptoms.
  • Chemotherapy to try to shrink the melanoma.
  • Entry into clinical trials of new therapies for melanoma.
  • Supportive care without active treatment.

It is important to remember that melanoma can be very different for different people, depending on the stage of diagnosis, the subtype of melanoma, as well as your age and how healthy you are. For most people, if the melanoma is caught at an early stage (I and II), the treatment is very straightforward and it is unlikely to return.

If your melanoma is more advanced (stage III and IV), your choices are likely to depend on factors such as your general health, your age and what’s important to you in terms of treatment outcomes and how the treatment might affect your daily life. Even for these stages outcomes are improving all the time.

What stage is your Melanoma at?