The Melanoma Patient Decision Aid

This supportive guidance is for those who have been diagnosed with cutaneous melanoma – a type of skin cancer and the most common form of melanoma. It is designed to help you and your family understand the options for treatment, helping with any decisions you might have to make with your specialist healthcare team. This Patient Decision Aid (PDA) does not cover ocular or mucosal melanoma (much rarer forms of melanoma).

All cancers can be divided into different ‘stages’ depending on the original size of the primary cancer or 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 your doctor’s advice and where there is only limited clinical evidence to support one option over another.

You 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.

If you have any concerns or worries please contact our Helpline, which is manned by skin cancer nurses. You will be called back between 7-9pm that day. click here for the helpline

Melanocytes make a pigment called melanin. This gives skin its natural colour. The pigment helps to protect the body from ultraviolet light (UV radiation) from the sun. Melanoma is an uncontrolled abnormal growth of these melanocyte cells. Melanoma that arises from the skin, as opposed to in other places such as in the mucosa or eye, is known as cutaneous melanoma 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; the skin around the melanoma often appear quite normal. They develop when the melanocytes become cancerous and multiply in an uncontrolled way. These cancerous or 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 15,900 new cases of melanoma in the UK in 2015. Melanoma diagnoses have increased significantly since the 1970s.[2]

The rise in melanoma may be to do with a change in how much time we spend in the sun, such as more people taking holidays abroad.  Ultraviolet light (radiation) is the main environmental factor that increases the risk of developing melanoma.  Ultraviolet light comes from the sun or sunbeds, however some people are more at risk of getting melanoma than others.  People who are very fair skinned, especially with fair or red hair, or people with a lot of freckles are more at risk of developing melanoma. If you have a tendency to get sunburnt, you are at more than average risk of melanoma. People most at risk are those who don’t tan at all, such as people with very fair skin and those who go red and then peel before getting a tan.[3]

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 medical team will advise you which ‘stage’ your cancer is at. The stage of a melanoma tells you how deeply it has grown into the skin, and how far it has spread.  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 you 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).

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 medical team will talk these through with you, but this guide is designed to help with your discussions to help 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.  Depending on where the melanoma is, this may be done by a plastic surgeon.  At the same time your doctor may offer you a sentinel lymph node biopsy.
  • Sentinel lymph node biopsy – The most common place that melanoma skin cancer spreads to is the nearby lymph nodes. Your specialist should offer you a sentinel lymph node biopsy, if your melanoma is deeper than 1mm (stage IB to IIC) or if there are additional risk factors. This is a test to find the first lymph node or nodes that a melanoma may spread to, and then check for cancer cells.  You have a sentinel lymph node biopsy (SLNB) at the same time as your operation to remove tissue around the melanoma (wide local excision).  The initial imaging procedure will take place in the nuclear medicine department in the hospital, then you will your surgery in the operating theatre.

After these procedures, an oncologist may discuss other treatments options including:

  • Adjuvant therapy to reduce the risk of future return of the cancer (for stage IIIA, IIIB, IIIC, IIID and resected stage IV disease).
  • 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 (uncommon).
  • Entry into clinical trials of new therapies for melanoma.
  • Localised chemotherapy for disease limited mainly to areas of the skin (Electrochemotherapy, Isolated Limb Infusion)
  • 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, 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?