About this eBook

This eBook is about a type of skin cancer called melanoma. It is for anyone who is having tests after surgery to remove a melanoma. It may also be useful to anyone making decisions about further treatment to reduce the risk of melanoma coming back (adjuvant treatment). There is also information for carers, family members and friends.

The eBook explains tests that are used to check the lymph nodes. It gives information about treatment options, including targeted and immunotherapy drugs. It also has information about feelings, practical issues and money.

We hope it helps you deal with some of the questions or feelings you may have. We cannot give advice about the best treatment for you. You should talk to your doctor, who knows your medical history.

This eBook does not have information about surgery to remove a melanoma, advanced melanoma or other types of skin cancer. The following booklets may help:

Understanding melanoma: surgery to remove a melanoma

- Understanding advanced melanoma

- Understanding skin cancer

How to use this eBook

This eBook is split into sections to help you find what you need. You do not have to read it from start to finish. You can use the contents list to help you.

It is fine to skip parts of the eBook. You can always come back to them when you feel ready.

At the end of the eBook there are details of other organisations that can help.

Quotes

In this eBook, we have included quotes from people who have had melanoma, which you may find helpful. This includes Sharon, who is on the cover of this eBook. These are from people who have chosen to share their story with us. To share your experience, visit macmillan.org.uk/shareyourstory

For more information

If you have more questions or would like to talk to someone, call the Macmillan Support Line free on 0808 808 00 00, 7 days a week, 8am to 8pm, or visit macmillan.org.uk

If you would prefer to speak to us in another language, interpreters are available. Please tell us, in English, the language you want to use.

If you are deaf or hard of hearing, call us using NGT (Text Relay) on 18001 0808 808 00 00, or use the NGT Lite app.

We have some information in different languages and formats, including audio, eBooks, easy read, Braille, large print and translations. To order these, visit macmillan.org.uk/otherformats or call 0808 808 00 00.

About melanoma

After surgery to remove a melanoma

Melanoma is a cancer that usually starts in the skin. It can start in a mole or in normal-looking skin.

If you have an abnormal mole that your doctor thinks may be a melanoma, they will advise you to have the whole mole removed. This is called an excision biopsy. It is the most important test to diagnose melanoma.

The tissue that is removed is sent to a laboratory. A doctor examines it under a microscope. If the biopsy shows a melanoma, you usually need another operation to remove more tissue. This is called a wide local excision.

We have information about having an excision biopsy and wide local excision surgery in our booklet Understanding melanoma: surgery to remove a melanoma. For many people, this will be the only treatment they need.

This eBook explains what might happen after your surgery. This includes information about:

- tests to check if the melanoma has spread to the lymph nodes nearby

- further treatment some people may be offered.

The aim of further treatment is to reduce the risk of the melanoma coming back.

‘Macmillan has been a huge support to me. On numerous occasions I have telephoned to speak to a nurse for advice.’ Sharon, diagnosed with melanoma

What is cancer?

Cells are tiny building blocks that make up the body’s organs and tissues. Cells receive signals from the body, telling them when to grow and when to divide to make new cells. This is how our bodies grow and heal. These cells can become old, damaged or no longer needed. When this happens, the cell gets a signal from the body to stop working and die.

Sometimes these signals can go wrong, and the cell becomes abnormal. The abnormal cell may keep dividing to make more and more abnormal cells. These can form a lump, called a tumour.

Abnormal cells forming a tumour

Not all tumours are cancer. Doctors can tell if a tumour is cancer by taking a small sample of cells from it. This is called a biopsy. The doctors examine the sample under a microscope to look for cancer cells.

A tumour that is not cancer (a benign tumour) may grow, but it cannot spread to anywhere else in the body. It usually only causes problems if it grows and presses on nearby organs.

A tumour that is cancer (a malignant tumour) can grow into nearby tissue.

Sometimes cancer cells spread from where the cancer started (the primary site) to other parts of the body. They can travel around the body in the blood or through lymph fluid which is part of the lymphatic system . When these cancer cells reach another part of the body, they may grow and form another tumour. This is called a secondary cancer or a metastasis.

The lymphatic system

The lymphatic system helps protect us from infection and disease. It is made up of fine tubes called lymphatic vessels. These vessels connect to groups of small lymph nodes throughout the body. The lymphatic system drains lymph fluid from the tissues of the body before returning it to the blood.

Lymph nodes are sometimes called lymph glands. They filter bacteria (germs) and disease from the lymph fluid. When you have an infection, some lymph nodes may swell as they fight the infection.

The lymphatic system

Staging of melanoma

The stage of a melanoma describes:

- how thick (deep) it is

- whether it has spread from where it started.

Knowing the stage of the melanoma helps doctors plan the best treatment for you.

The way melanoma is staged is complicated. This section gives a simple explanation of 3 different ways of staging melanoma:

- the number stages from 0 to 4

- Breslow thickness

- TNM staging.

Your specialists can give you more information about the stage of your melanoma.

Stage 0 (melanoma in situ)

Melanoma in situ is a term used to describe the earliest stage of melanoma. The melanoma is only in the top layer of skin, called the epidermis. It has not started to spread into the dermis. People with melanoma in situ do not usually have any risk of the melanoma spreading to other parts of the body.

Stage 1 melanoma

Stage 1 means the melanoma is either:

- 1mm or less thick

- 1 to 2mm thick and the skin over the melanoma has not broken.

This is an early-stage melanoma. It is only in the skin. It has not spread to other parts of the body.

Stage 2 melanoma

Stage 2 means the melanoma is either:

- 1 to 2mm thick and the melanoma has broken the outer layer of skin (ulcerated melanoma)

- thicker than 2mm.

It has not spread to other parts of the body.

Stage 3 melanoma

Stage 3 means the melanoma has spread in the same area of the body. It may have spread to the following areas:

- Nearby lymph nodes.

- Areas of skin less than 2cm away from where the melanoma started. These areas are called satellite metastases.

- Areas of skin more than 2cm away from where the melanoma started and up to the nearby lymph nodes. These areas are called in-transit metastases.

It has not spread to any other parts of the body.

Stage 4 melanoma

Stage 4 means the melanoma has spread to other areas of the body such as:

- other areas of the skin

- the lungs, liver, bones or brain.

This is also called advanced or metastatic melanoma. We have more information in our booklet Understanding advanced melanoma.

Breslow thickness

The Breslow thickness describes how thick the melanoma is. It measures in millimetres (mm) how far the melanoma cells have grown down into the layers of skin.

There are 5 levels of tumour (T) thickness:

- Tis – the melanoma cells are only in the very top layer of the skin (epidermis)

- T1 – the melanoma is 1mm thick or less

- T2 – the melanoma is between 1mm and 2mm thick

- T3 – the melanoma is between 2mm and 4mm thick

- T4 – the melanoma is more than 4mm thick.

The different levels of tumour thickness

TNM staging for melanoma

The TNM staging system describes the stage of melanoma using letters and numbers.

T is for tumour

T stands for tumour. It describes the thickness of the melanoma. This is also called the Breslow thickness.

N is for nodes and nearby skin

N stands for nodes and nearby skin. It describes if the melanoma has spread to nearby lymph nodes. It also describes any spread to areas of skin between the tumour and these lymph nodes. This is called in-transit, satellite or microsatellite metastases.

- N0 – the melanoma has not spread from where it started.

- N1 – the melanoma has spread to 1 lymph node or to nearby areas of skin.

- N2 – the melanoma has spread to 2 or 3 lymph nodes, or to 1 lymph node and nearby skin.

- N3 – the melanoma has spread to 4 or more lymph nodes, or to 2 or more lymph nodes and nearby skin, or it has spread to any number of lymph nodes and these have stuck together.

M is for metastases

M stands for metastases. It describes whether the melanoma has spread to other parts of the body such as the lungs, liver, bones, brain or distant areas of the skin. This is also called advanced or metastatic cancer.

- M0 – The melanoma has not spread to other parts of the body.

- M1 – The melanoma has spread to other parts of the body.

Tests after a melanoma diagnosis

Tests to check your lymph nodes

If tests show the mole is melanoma, your doctor may suggest tests to check the lymph nodes nearby.

Not everyone needs these tests. It depends on how deep the melanoma is and if the lymph nodes look or feel swollen.

Tests may include the following:

- Sentinel lymph node biopsy – this test checks the lymph nodes closest to the melanoma.

- Ultrasound scan - this scan uses sound waves to make up a picture of an area of the body. The person doing the ultrasound spreads gel over the area where the lymph nodes are. They pass a small device called an ultrasound probe over this area. The probe makes sound waves. A computer changes the sound waves into a picture.

- Fine needle aspiration (FNA) - if the ultrasound scan of the lymph nodes is abnormal, the doctor will do a fine needle aspiration. The doctor puts a very fine needle into the lymph node and withdraws a sample of cells into the syringe. The sample is sent to the laboratory.

Sentinel lymph node biopsy (SLNB)

A sentinel lymph node biopsy (SLNB) is a way of checking the lymph nodes closest to the melanoma. You may have this test even if your lymph nodes do not look or feel swollen. It can help to find very small amounts of melanoma that have spread to the lymph nodes.

The sentinel node is the first node that lymph fluid drains to from the melanoma. If the melanoma has spread, the sentinel node is most likely to be affected. There may be more than 1 sentinel node.

This test is not suitable for everyone. Your doctor or specialist nurse may talk to you about having an SLNB if the melanoma is:

- 1mm or thicker

- thinner than 1mm, but there are other risk factors.

You usually have an SLNB at the same time as surgery to remove a surrounding area of healthy tissue from where the melanoma was. This surgery is called a wide local excision.

An SNLB provides more accurate information about:

- the stage of the melanoma

- the risk of the melanoma coming back.

Your doctor will ask you to decide whether to have an SLNB. They will explain the possible advantages and disadvantages. It may help you and your doctor to plan the best treatment for you. If you decide not to have an SLNB, you still have the wide local excision. If there are no melanoma cells in the sentinel lymph nodes, it is unlikely the melanoma has spread to other lymph nodes. You will not need further tests or treatment.

Before an SLNB

You need a scan to find out which lymph nodes are the sentinel lymph nodes. You usually have the scan on the day of your surgery, or the day before.

You will be asked to lie down. You may be given a local anaesthetic cream to rub onto the skin to numb the area. A harmless amount of radioactive liquid is injected into the area where the melanoma started. The dose is very small, and it quickly loses its radioactivity.

The radioactive liquid travels through the skin’s lymphatic vessels. It drains into the lymph nodes closest to the melanoma. These are the sentinel lymph nodes.

You usually then have a scan using a special camera. It finds the nodes that picked up the radioactivity and shows them on a screen. The skin is marked over the sentinel node or nodes to help the surgeon find them easily and remove them. The scan finds the sentinel nodes, but cannot show whether melanoma cells are in the lymph nodes.

Radioactive liquid is injected where the melanoma started

During the SNLB

You have the SLNB at the same time as the wide local excision. You have it under a general anaesthetic. Your nurse will explain how to prepare for this operation.

During the operation, the surgeon may inject a blue dye into the area of the melanoma. This stains the sentinel lymph nodes blue. It is another way of finding the sentinel nodes.

Blue dye is injected

The surgeon removes the blue and radioactive nodes (the sentinel nodes) through a cut or cuts they make on the skin. The nodes are then looked at under a microscope to check for melanoma cells. It may be up to 2 weeks before you get the results of the SLNB.

Side effects of an SLNB

Your doctor and nurse will explain the side effects and any possible complications of an SLNB.

Because you only have the sentinel nodes removed, there are fewer side effects than having all the lymph nodes removed.

For example, you are less likely to have an infection or bruising or bleeding.

Lymphoedema (swelling) is a possible complication of having all the lymph nodes removed. But the risk of developing lymphoedema after an SLNB is very low.

We have more information in our booklet Understanding lymphoedema.

You usually have self-dissolving stitches. You will have a scar where the nodes were removed.

The blue dye may cause the following side effects:

- Blue or green urine (pee) – you may notice this for up to 2 days after the SLNB. This is the body’s way of flushing out the blue dye. It is not harmful.

- Allergic reaction – there is a small risk of this after the dye is injected. Your surgeon will monitor you closely. If you have a reaction, you will be given drugs to treat it straight away.

Further tests

If the melanoma has spread to the lymph nodes, you may have the following tests to check if it has spread anywhere else in the body. We have more about these on our website, or your doctor or nurse can give you more information.

CT scan

A CT scan takes a series of x-rays, which build up a 3-dimensional picture of the inside of the body.

PET-CT scan

A PET-CT scan is a combination of a CT scan and a PET scan. A PET scan uses low-dose radiation to measure the activity of cells in different parts of the body.

MRI scan

An MRI scan uses magnetism to build up a detailed picture of areas of the body.

Tests on the melanoma cells

About half of all people with melanoma (50%) have a change in the melanoma cells called a BRAF V600e gene mutation. This causes the melanoma cells to make a protein that encourages the cells to grow.

Your cancer doctor may arrange tests to look for this gene change. Tests can be done on melanoma cells that were removed during surgery. Or sometimes, your doctor might want to take another sample of cells to test. Your cancer doctor or specialist nurse can explain more about testing for gene changes.

The results tell your cancer doctor if certain targeted and immunotherapy drugs will work for you if you should need them.

If tests show that you have a BRAF gene mutation in the melanoma cells, your cancer doctor may offer you a combination of targeted therapies. If you do not have the BRAF gene mutation, you may be offered immunotherapy treatment.

Treatment after surgery

Treatment overview

Your cancer doctor will explain the results of your tests. They may talk to you about having further treatment, depending on:

- how deep the melanoma is

- whether it has broken the skin (ulcerated)

- whether it has spread to nearby lymph nodes.

If melanoma has spread to nearby lymph nodes

If tests show the melanoma has spread to nearby lymph nodes, your doctor will talk to you about the best way of treating this.

You and your doctor may decide that having regular ultrasound scans of your lymph nodes is the best option for you. These scans check if the cancer is growing in that area and if you need treatment.

Or your doctor may talk to you about having further treatment with targeted or immunotherapy drugs. This is called adjuvant treatment. It aims to reduce the risk of the melanoma coming back.

Sometimes your doctor may talk to you about having surgery to remove all the nearby lymph nodes. This may depend on the risk of the melanoma causing symptoms in that area.

Treatment to reduce the risk of melanoma coming back

Your doctor may offer you further treatment to reduce the risk of melanoma coming back after surgery. This is called adjuvant treatment. It is an option if there are factors that increase the risk the of melanoma coming back. If you have stage 2 melanoma, you may have adjuvant treatment with a type of immunotherapy drug called pembrolizumab.

If you have stage 3 melanoma, you may have adjuvant treatment with 1 of the following:

- If tests show a BRAF gene mutation in the melanoma cells, you may have a combination of 2 targeted therapy drugs. These drugs are called dabrafenib and trametinib.

- If tests do not find a BRAF gene mutation, you may have 1 or more immunotherapy drugs. These drugs are called ipilimumab, pembrolizumab and nivolumab.

You usually have adjuvant treatment for up to 12 months. Your doctor and nurse will talk to you about the possible benefits and risks of having it. It is important to think about all these and how treatment and possible side effects may affect your daily life.

Sometimes your doctor may suggest not having treatment straight away. They may do this if the risks of treatment outweigh the benefits. Instead, your doctor may advise having regular appointments and tests.

Your doctor or specialist nurse will talk to you about the different treatment options and things to think about when making treatment decisions. You can then decide together what treatment is best for you. You may be offered some treatments as part of a clinical trial.

Treatment for melanoma that has spread

Sometimes melanoma cannot be removed with surgery, or tests show that the cancer cells have spread to other areas of the body.

Your doctor and nurse will talk to you about the best way of  managing this. If you need treatment, this usually involves having targeted therapy or immunotherapy drugs. We have more information about advanced melanoma in our booklet Understanding advanced melanoma.

Multidisciplinary team (MDT)

A team of healthcare professionals will work with you to plan your treatment for melanoma. This is called the multi-disciplinary team (MDT).

The MDT look at national treatment guidelines and the latest evidence for the type of cancer you have. If you have any treatment preferences, your doctor will tell them about them. The MDT will usually include the following professionals:

- Oncologist – a cancer doctor who specialises in treating people with cancer using targeted and immunotherapy drugs, radiotherapy and chemotherapy.

- Skin cancer nurse specialist – a nurse who gives information about skin cancer, and support during treatment.

- Dermatologist – a doctor who treats skin problems.

- Plastic surgeon – a doctor who does operations (surgery) to repair or reconstruct tissue and skin.

- Pathologist – a doctor who looks at cells or body tissue under a microscope to diagnose cancer.

- Radiologist – a doctor who looks at scans and x-rays to diagnose problems.

The MDT may also include other healthcare professionals. The MDT meet to talk about your treatment plan. They consider things such as:

- your general health

- the stage of the melanoma

- where it is on your body.

Talking about your treatment plan

After the MDT meeting, you will usually meet your cancer doctor and specialist nurse. They will talk to you about your treatment plan. It can help to write down your questions before you meet them. You may want to ask a family member or friend to come with you. They can help remember what is said and talk with you about it afterwards. You need to know as much as possible before you can make any treatment decisions.

Your doctor should explain:

- the aim of the treatment – whether it is to cure the cancer or

- control it

- the benefits of the treatment

- the disadvantages of the treatment – for example, the risks and side effects

- any other treatments that may be available

- what may happen if you do not have the treatment.

Cancer treatments can be complex. It can also be hard to concentrate on what you are being told if you are feeling anxious. If the doctor says something you do not understand, ask them to explain it again.

Most people worry about the side effects of treatment. Your doctor or nurse will explain how side effects can be controlled and what you can do to manage them. They can also tell you if your treatment is likely to cause any late effects and how these can be managed.

You may need more than one meeting with your doctor or nurse to talk about your treatment plan.

Making treatment decisions

You and your doctor can decide together on the best treatment plan for you. Your doctor is an expert in the best treatments. But you know your preferences and what is important to you. You can decide how involved you want to be in your treatment plan.

Sometimes doctors need to review a treatment plan. This may be when more information about the cancer becomes available – for example, when the doctor knows the results of surgery to remove the cancer. It may mean making more decisions with your doctor.

Giving your permission (consent)

Doctors need your permission (consent) before you have any treatment. They will give you all the information you need to make your decision.

You can give consent in writing when you sign a form that your doctor gives you, agreeing to a treatment. Or it can be a spoken (verbal) agreement with your doctor. Your doctor records your consent in your patient notes.

You may decide not to have treatment even when your doctor advises you to have it. If you refuse treatment, your decision must be respected. But your doctor needs to make sure you have all the information you need to make your decision. You need to understand all your treatment options and what will happen if you do not have the treatment.

Always talk to your doctor about any concerns you have, so they can give you the best advice.

Second opinion

A second opinion is an opinion from a different doctor about your treatment. If you think you want a second opinion, talk to your specialist doctor or GP first. Tell them your concerns or ask them to explain anything you do not understand. This might help reassure you.

If you still want a second opinion, you can ask your specialist doctor or GP to arrange it. They are usually happy to do this. You may have to travel to another hospital to get a second opinion. Getting a second opinion could delay your treatment. Check with your doctor if this delay could be harmful to you.

If the doctor you see for the second opinion gives you the same advice, this can reassure you. Sometimes they give you other treatment options to think about.

We have more information about getting a second opinion on our website. Visit macmillan.org.uk/second-opinion

Contraception and fertility

Your doctor may ask you to use contraception to prevent pregnancy during and after some types of drug treatment. This is important if the treatment may harm a developing baby.

Some treatments can affect being able to get pregnant or make someone pregnant. This is called your fertility. Your doctor or nurse can explain if your treatment is likely to cause fertility problems. If you are worried about this, talk to your doctor before your treatment starts.

We have more information in our booklets Cancer and fertility - information for men and Cancer and fertility - information for women.

Targeted therapy

Targeted therapy drugs target something in or around the cancer cell that is helping it grow and survive.

These drugs are only used if tests show that the cancer cells have a change (mutation) in a gene called BRAF (see Tests on the melanoma cells). They have not been shown to be useful or safe unless the cancer cells have this change.

You may have a combination of 2 targeted therapy drugs called dabrafenib and trametinib to reduce the risk of melanoma coming back after surgery. These drugs are also called cancer growth inhibitors. Cancer growth inhibitors block the signals that tell cells in the body to develop and divide. This may stop cancer cells from developing or dividing.

How targeted therapy is given

You take the drugs as tablets or capsules every day for up to 12 months. Different drugs are taken in slightly different ways. It is important to follow your cancer team’s advice about how to take each drug.

Possible side effects

Your cancer doctor or nurse will explain the possible side effects of the drugs you are having. They will give you advice about how these can be managed. Always tell them about any side effects you have so they can help.

Some common side effects include:

- feeling sick

- tiredness

- loss of appetite

- an itchy rash or dry, sensitive skin

- sore and red palms of hands and soles of feet

- muscle or joint pain.

Immunotherapy

The immune system protects the body against illness and infection. Immunotherapy treatment uses the immune system to recognise and kill cancer cells.

You may have a type of immunotherapy called a checkpoint inhibitor drug to reduce the risk of melanoma coming back after surgery. Checkpoint inhibitor drugs activate white blood cells called lymphocytes to attack cancer cells. Lymphocytes are an important part of your immune system.

Checkpoint inhibitors that are used to treat melanoma include:

- ipilimumab (YERVOY®)

- nivolumab (Opdivo®)

- pembrolizumab (Keytruda®).

We have more information about each of these drugs on our website. Visit macmillan.org.uk/treatments-and-drugs

Your cancer doctor and nurse will explain what drugs are useful for you. They will give you information about how the drug is given and possible side effects. Sometimes immunotherapy is given as part of a clinical trial. Visit macmillan.org.uk/clinical-trials for more information.

How immunotherapy is given

You have the drug at a day unit as an outpatient. It is given as a drip into a vein. This is called intravenous infusion. Sometimes, 2 checkpoint inhibitor drugs are given together. Your cancer doctor or nurse will explain your treatment plan and what to expect.

After the treatment, you have a rest period of a few weeks. Together, the immunotherapy and the rest period are called a cycle of treatment. The length of a cycle depends on the treatment you are having. You usually have cycles of treatment for up to 12 months.

Possible side effects

Common side effects of checkpoint inhibitor drugs include:

- feeling tired

- skin changes or rashes

- diarrhoea

- feeling short of breath.

This type of drug affects the immune system and can cause serious side effects related to the immune system. Your cancer doctor or nurse will give you information about this. Side effects may be mild but sometimes they can become serious very quickly if they are not treated.

Side effects can start during treatment. They can also start weeks, months, or sometimes more than a year, after you finish treatment.

It is important to tell your cancer doctor or nurse about any side effects you have as soon as possible.

Your doctor, nurse or pharmacist will also give you a card with information about your treatment on it. It is important to always have the card with you during treatment and after treatment finishes. You should always show it to any doctor or healthcare professional you need to see or who prescribes any other medication for you.

Surgery to remove the lymph nodes

If melanoma has spread to your nearby lymph nodes, your doctor may talk to you about surgery to remove them. This operation is called a lymph node dissection or lymphadenectomy.

It may be an option if you cannot have treatment with targeted or immunotherapy drugs, or you have already had these treatments. The aim is to remove the cancer cells. This reduces the risk of melanoma coming back in the same area and causing symptoms. Having lymph nodes removed can cause side effects. It is quite a big operation and can leave a large scar.

It can also cause, or put you at higher risk of, lymphoedema. Lymphoedema is chronic swelling in an area near the area of surgery, usually an arm or leg. We have more information in our booklet Understanding lymphoedema.

Your cancer team will talk to you about these risks before you make a decision about surgery. They will explain other treatments that may also be helpful or that are less likely to have risks for you.

Your surgeon will remove your lymph nodes under a general anaesthetic. You are likely to be in hospital overnight and may need to stay in for 3 to 5 days.

After your operation

After the operation, you may have a small tube (drain) in place. This lets any fluid that builds up around the wound drain out of the body into a small bottle. The nurse will remove the tube when most of the fluid has drained away. This is usually within a few days. You might go home with the drain in place. It can be removed by a practice nurse at your GP surgery or a district nurse at home.

The wound will be covered with a dressing. Your stitches or staples will be removed 10 to 14 days later. If you have dissolvable stitches, these do not need to be removed. You will probably have some discomfort or pain afterwards, but you can have regular painkillers to help with this.

After your operation, you may see a physiotherapist. They will show you some exercises to help you move normally again. Before you go home, your nurse will give you advice about looking after the wound. They will also tell you who to contact if you have any problems or signs of infection including:

- redness or swelling around the wound

- the wound feeling painful or hot to touch

- pus leaking from the wound.

If you develop an infection, this can be treated with antibiotics.

Some people get a small collection of fluid around the wound scar. This is called a seroma. It usually goes away within a few weeks. Sometimes your surgeon may need to drain the fluid with a needle and syringe.

It may take some time to recover following this operation.

Your surgeon or nurse will explain what to expect. They will give you advice about driving, heavy lifting and other activities.

After treatment

Follow-up

After your treatment, your doctor or specialist nurse will explain the follow-up appointments you need.

At the appointments they will continue to examine your skin and lymph nodes carefully. If you are taking ongoing targeted or immunotherapy drugs, they will ask about possible side effects. Some side effects of immunotherapy drugs can start months or sometimes more than a year after treatment has finished. It is important to tell your doctor or nurse about any side effects so these can be treated quickly.

You may feel anxious between appointments. It may help to get support from your specialist nurse, family members, friends or a support organisation.

‘I now have regular skin checks and ultrasound scans of my neck, as well as full-body CT scans every 6 months.’ Natasha, diagnosed with melanoma

Checking your skin

It is important to check yourself for any signs of melanoma at least once a month. If another melanoma develops, there is a better chance of a cure if it is found early. If you have symptoms, contact your cancer doctor or specialist nurse. Remember, you can contact them between your follow-up appointments.

Your cancer doctor and specialist nurse will ask you to check:

- your scar and the surrounding area

- the skin all over your body, for any new or changing moles.

It can be helpful to stand in front of a mirror to check your skin. Ask your doctor or nurse if you are not sure how to check.

They may also ask you to check your lymph nodes after your treatment. A good time to do this is in the shower or bath. The British Association of Dermatologists produces a leaflet with advice about how to check your lymph nodes.

‘I had skin check-ups and PET-CT scans for 5 years to monitor for any changes. My medical team have always been so wonderful, they are all my angels.’ Sharon

Skincare in the sun

After treatment for melanoma, your doctor or specialist nurse will give you information about protecting your skin from the sun. You can still enjoy sunshine or have holidays in sunny countries. But it is important to protect your skin to help reduce your risk of further melanomas.

There are a number of things you can do to protect your skin:

- Stay out of the sun when it is strongest. This is usually between 11am and 3pm.

- Wear clothing made of a close-weave fabric. This will give you more protection against the sun.

- Keep your arms and legs covered by wearing long-sleeved tops and trousers. Wear a wide-brimmed hat to protect your face, neck and ears.

- Always wear sunglasses in the sun.

- Use a high-factor suncream of SPF 30 or above whenever you are exposed to the sun for a period of time. Follow the instructions on the bottle and re-apply it as recommended.

- Choose a suncream that protects against UVA (at least 4 stars) and UVB radiation (at least SPF 30).

- Make sure you use enough suncream. About 6 to 8 teaspoons is enough to cover most adults.

- Do not use suncream instead of covering up or staying in the shade. You might think that if you use suncream, you can stay in the sun for longer. But the best protection is to cover up and to stay out of direct sunlight. There is no such thing as a safe suntan.

- Never use a sunbed or sunlamp. If you prefer to look tanned, use fake tan.

- If you use a sunbed for treatment of a skin condition, your dermatologist may advise you to stop using it.

If you are not often outdoors or in the sun, ask your cancer doctor or GP to check your vitamin D levels.

Vitamin D is important for general health and can become low in people who avoid the sun or are indoors most of the time. You may need to take vitamin D supplements if your levels are low.

‘I have to be covered up, wear a hat and cover any bit of skin not covered by clothing with suncream.’ Anne, diagnosed with melanoma

Sex, fertility and pregnancy after treatment

Cancer and its treatment can cause physical and emotional changes that may affect your sex life. You can read more about coping with these and things that may help in our booklet Cancer and your sex life.

If you are thinking of getting pregnant, or making someone pregnant, after melanoma treatment, talk to your specialist nurse or doctor first. They can give you more information that may help you plan a pregnancy. This will depend on the melanoma treatment you had and any follow-up tests you need. You may also find our booklet called Cancer and pregnancy helpful.

Some cancer drugs can affect your ability to get pregnant or make someone pregnant. If melanoma treatment has damaged your fertility, your specialist nurse or doctor can give you advice about your options to help start a pregnancy.

Well-being and support

Even if you already have a healthy lifestyle, you may choose to make some positive lifestyle changes after treatment.

Making small changes such as eating well and keeping active can improve your health and wellbeing and help your body recover. We have more information in our booklets Healthy eating and cancer and Physical activity and cancer.

‘Managing the psychological and mental aspect has been the most challenging for me.’ Mike, diagnosed with melanoma

Getting help and support

It is common to have different feelings after cancer treatment. But as you recover, these usually get easier to deal with. Talking to family members or friends usually helps. If you are feeling very anxious or depressed, tell your doctor or nurse. They may be able to refer you to a counsellor or psychologist for more expert support.

There are also organisations such as Melanoma Focus and Melanoma UK that offer information and support.

Your feelings and relationships

Your feelings

It is common to have many different feelings when you are told you have cancer. You may feel shocked, scared, depressed, guilty or angry. This can be difficult to cope with. Partners, family and friends may also have some of the same feelings.

We have more information about emotions on our website and in our booklet How are you feeling? The emotional effects of cancer.

Your healthcare team will usually give you support. But you may feel you need more help. Talk to your cancer doctor, GP or specialist nurse. They can refer you to a specialist doctor, psychologist or counsellor who can help.

You can also call the Macmillan Support Line on 0808 808 00 00 and talk to one of our cancer support specialists.

Talking to family, friends or other people affected by cancer may help. For more information or for help finding local support groups, visit macmillan.org.uk/supportgroups

Or talk to other people on our Online Community at macmillan.org.uk/community

There is more information about other ways we can help you.

‘A friend of mine told me about the mindfulness course being run by Macmillan and said I might find it useful. The first session wasonly 10 days after my surgery, which I initially thought was a bit soon. However, I went along anyway and found I enjoyed thefirst session.’ Clare, diagnosed with melanoma

Relationships

Cancer and its treatment are stressful and may affect your relationships. Your experience of cancer may strengthen your relationships with people close to you. Or it may put a strain on relationships.

Any problems usually improve over time, especially if you talk openly with each other.

We have more information online about relationships and in our booklets Talking about cancer and Cancer and relationships: support for partners, families and friends.

If you are a family member or friend

If you know someone with cancer, you might find it hard to talk about the cancer or your feelings. You can support the person with cancer by listening and talking with them.

We have more information about supporting someone on our website and in our booklet Talking with someone who has cancer.

If you are looking after a family member or friend with cancer, you may be a carer. We have more information and practical tips for carers on our website and in our booklet Looking after someone with cancer.

Talking to children and teenagers

Deciding what to tell children or teenagers about cancer is difficult. It can be hard to know what to tell them, and you may be worried about upsetting them. It may be best to start by giving them small amounts of information, and then tell them more when they are ready.

Use simple, straightforward language to explain what is happening. You can encourage them to talk to someone they trust, who can support them. They may also find support online.

The website riprap.org.uk offers information and support for teenagers who have a parent with cancer.

We have more information in our booklet Talking to children and teenagers when an adult has cancer.

‘When I did tell my children, my son contacted a Macmillan nurse to ask some questions that he felt he couldn’t ask me.’ Anthea,diagnosed with melanoma

Financial support and work

Help with money and benefits

When you are affected by cancer, you may need help with extra costs. Or you may need support with money if you have to stop working. We have more information online about Statutory Sick Pay and benefits you may be entitled to. We also have information for carers.

Benefits are payments from the government to people who need help with money. You can find out more about benefits and apply for them online. Go to:

- gov.uk if you live in England or Wales

- socialsecurity.gov.scot if you live in Scotland

- nidirect.gov.uk if you live in Northern Ireland.

The benefits system and other types of financial support can be hard to understand. Macmillan has experienced welfare rights advisers and financial guides. You can speak to them by calling the Macmillan Support Line on 0808 808 00 00.

You can also get information about benefits and other types of financial help from Citizens Advice if you live in England, Scotland or Wales, or Advice NI if you live in Northern Ireland.

Our booklet Help with the cost of cancer has lots more information.

‘I phoned a Macmillan welfare rights adviser. He advised me how to cut back on certain bills and helped me arrange payment plans on some of my bills.’ Sharon

Macmillan Grants

Macmillan Grants are small, mostly one-off payments to help people with the extra costs that cancer can cause. They are for people who have a low level of income and savings.

If you need things like extra clothing or help paying heating bills, you may be able to get a Macmillan Grant. A grant from Macmillan does not usually affect the benefits you are entitled to. It is an extra bit of help, not a replacement for other support.

To find out more, or to apply, call on 0808 808 00 00 or visit macmillan.org.uk/grants

Insurance

If you have, or have had, cancer, you may find it hard to get certain types of insurance.

If you are thinking about buying insurance or making a claim, one of our financial guides can help. You can call them on 0808 808 00 00.

We have more information in our booklet Travel and cancer. Our Online Community forum on Travel insurance may also be helpful. Visit macmillan.org.uk/community

Work

You may not know how cancer will affect your work, now or in the future.

It is a good idea to talk to your manager or human resources (HR) department soon after you are diagnosed. This will help them to support you better. Your cancer doctor, GP or specialist nurse can help you decide whether you should go back to work, and when.

Our booklets Work and cancer, Working while caring for someone with cancer and Self-employment and cancer have more information that may be helpful.

You can also find out more about your employment rights in our booklet Your rights at work when you are affected by cancer.

There is also lots more information online at macmillan.org.uk/work

‘I just wanted to talk to someone about the questions going through my head. What will work be like? What should I be asking for? What am I entitled to?’ Sally, diagnosed with melanoma.

Further information

About our information

We provide expert, up-to-date information about cancer. And all our information is free for everyone.

Order what you need

You may want to order more booklets or leaflets, or download more eBooks like this one. Visit be.macmillan.org.uk or call us on 0808 808 00 00.

We have booklets on different cancer types, treatments and side effects. We also have information about work, financial issues, diet, life after cancer and information for carers, family and friends.

Online information

All of our information is also available online at macmillan.org.uk/information-and-support There you’ll also find videos featuring real-life stories from people affected by cancer, and information from health and social care professionals.

Other formats

We also provide information in different languages and formats, including:

- audiobooks

- Braille

- British Sign Language

- Easy Read booklets

- large print

- translations.

Find out more at macmillan.org.uk/otherformats If you’d like us to produce information in a different format for you, email us at cancerinformationteam@macmillan.org.uk or call us on 0808 808 00 00.

Help us improve our information

We know that the people who use our information are the real experts. That’s why we always involve them in our work. If you’ve been affected by cancer, you can help us improve our information.

We give you the chance to comment on a variety of information including booklets, leaflets and fact sheets.

If you’d like to hear more about becoming a reviewer, email reviewing@macmillan.org.uk You can get involved from home whenever you like, and we don’t ask for any special skills – just an interest in our cancer information.

Other ways we can help you

At Macmillan, we know how a cancer diagnosis can affect everything, and we are here to support you.

Talk to us

If you or someone you know is affected by cancer, talking about how you feel and sharing your concerns can really help.

Macmillan Support Line

Our free, confidential phone line is open 7 days a week, 8am–8pm. Our cancer support specialists can:

- help with any medical questions you have about your cancer or treatment

- help you access benefits and give you financial advice

- be there to listen if you need someone to talk to

- tell you about services that can help you in your area.

Call us on 0808 808 00 00 or email us via our website, macmillan.org.uk/talktous

Information centres

Our information and support centres are based in hospitals, libraries and mobile centres. There, you can speak with someone face to face.

Visit one to get the information you need, or if you’d like a private chat, most centres have a room where you can speak with someone alone and in confidence.

Find your nearest centre at macmillan.org.uk/informationcentres or call us on 0808 808 00 00.

Talk to others

No one knows more about the impact cancer can have on your life than those who have been through it themselves. That’s why we help to bring people together in their communities and online.

Support groups

Whether you are someone living with cancer or a carer, we can help you find support in your local area, so you can speak face to face with people who understand. Find out about support groups in your area by calling us or by visiting macmillan.org.uk/selfhelpandsupport

Online community

Thousands of people use our online community to make friends, blog about their experiences and join groups to meet other people going through the same things. You can access it any time of day or night. Share your experiences, ask questions, or just read through people’s posts at community.macmillan.org.uk

The Macmillan healthcare team

Our nurses, doctors and other health and social care professionals give expert care and support to individuals and their families. Call us or ask your GP, consultant, district nurse or hospital ward sister if there are any Macmillan professionals near you.

Help with money worries

Having cancer can bring extra costs such as hospital parking, travel fares and higher heating bills. If you’ve been affected in this way, we can help.

Financial guidance

Our financial guidance team can give you advice on mortgages, pensions, insurance, borrowing and savings.

Help accessing benefits

Our benefits advisers can offer advice and information on benefits, tax credits, grants and loans. They can help you work out what financial help you could be entitled to. They can also help you complete your forms and apply for benefits.

Macmillan Grants

Macmillan offers one-off payments to people with cancer. A grant can be for anything from heating bills or extra clothing to a much-needed break.

Call us on 0808 808 00 00 to speak to a financial guide or benefits adviser, or to find out more about Macmillan Grants. We can also tell you about benefits advisers in your area.

Visit macmillan.org.uk/financialsupport to find out more about how we can help you with your finances.

Help with work and cancer

Whether you’re an employee, a carer, an employer or are self-employed, we can provide support and information to help you manage cancer at work. Visit macmillan.org.uk/work

Other useful organisations

There are lots of other organisations that can give you information or support. Details correct at time of printing.

Melanoma support organisations

British Association of Dermatologists (BAD)

www.skinhealthinfo.org.uk

Online information and advice about living with a skin condition.

British Association of Skin Camouflage

www.skin-camouflage.net

Online information about using skin camouflage products to cover skin conditions or scarring.

Changing Faces

Support line 0300 012 0275

www.changingfaces.org.uk

Information and support for people living with a visible difference, and their family and friends. Offers a skin camouflage service at locations across the UK.

Melanoma Focus

Melanoma helpline 0808 801 0777

https://melanomafocus.org

Information, guidance and support for patients, carers and healthcare professionals. Provides a free helpline answered by expert skin nurses, and the Melanoma Trial Finder of melanoma trials in the UK.

Melanoma UK

Support line 0808 171 2455

www.melanomauk.org.uk

Support and information for patients, carers and healthcare professionals. Also provides a skin check toolkit.

General cancer support organisations

Cancer Black Care

Tel 020 8961 4151

www.cancerblackcare.org.uk

Offers UK-wide information and support for people from Black and minority ethnic communities who have cancer. Also supports their friends, carers and families.

Cancer Focus Northern Ireland

Helpline 0800 783 3339

www.cancerfocusni.org

Offers a variety of services to people affected by cancer in Northern Ireland.

Cancer Research UK

Helpline 0808 800 4040

www.cancerresearchuk.org

A UK-wide organisation that has patient information on all types of cancer. Also has a clinical trials database.

Cancer Support Scotland

Tel 0800 652 4531

www.cancersupportscotland.org

Runs cancer support groups throughout Scotland. Also offers free complementary therapies and counselling to anyone affected by cancer.

Macmillan Cancer Voices

www.macmillan.org.uk/cancervoices

A UK-wide network that enables people who have or have had cancer, and those close to them such as family and carers, to speak out about their experience of cancer.

Maggie’s

Tel 0300 123 1801

www.maggies.org

Has a network of centres in many locations throughout the UK. Provides free information about cancer and financial benefits. Also offers emotional and social support to people with cancer, their family, and friends.

Penny Brohn UK

Helpline 0303 3000 118

www.pennybrohn.org.uk

Offers physical, emotional and spiritual support across the UK, using complementary therapies and self-help techniques.

Riprap

www.riprap.org.uk

Developed especially for teenagers in the UK who have a parent with cancer. Has an online forum where teenagers going through similar experiences can talk to each other for support.

Tenovus

Helpline 0808 808 1010

www.tenovuscancercare.org.uk

Aims to help everyone in the UK get equal access to cancer treatment and support. Funds research and provides support such as mobile cancer support units, a free helpline, benefits advice and an online ‘Ask the nurse’ service.

General health information

Health and Social Care in Northern Ireland

www.northerntrust.hscni.net

Provides information about health and social care services in Northern Ireland.

NHS.UK

www.nhs.uk

The UK’s biggest health information website. Has service information for England.

NHS 111 Wales

111.wales.nhs.uk

NHS health information site for Wales.

NHS Inform

Helpline 0800 22 44 88

www.nhsinform.scot

NHS health information site for Scotland.

Patient UK

www.patient.info

Provides people in the UK with information about health and disease. Includes evidence-based information leaflets on a wide variety of medical and health topics. Also reviews and links to many health- and illness-related websites.

Counselling

British Association for Counselling and Psychotherapy (BACP)

Tel 0145 588 3300

www.bacp.co.uk

Promotes awareness of counselling and signposts people to appropriate services across the UK. You can also search for a qualified counsellor on the ‘How to find a therapist’ page.

UK Council for Psychotherapy (UKCP)

Tel 020 7014 9955

www.psychotherapy.org.uk

Holds the national register of psychotherapists and psychotherapeutic counsellors, listing practitioners who meet exacting standards and training requirements.

Emotional and mental health support

Mind

Helpline 0300 123 3393

www.mind.org.uk

Provides information, advice and support to anyone with a mental health problem through its helpline and website.

Samaritans

Helpline 116 123

Email jo@samaritans.org

www.samaritans.org

Provides confidential and non-judgemental emotional support, 24 hours a day, 365 days a year, for people experiencing feelings of distress or despair.

Financial support or legal advice and information

Advice NI

Helpline 0800 915 4604

Provides advice on a variety of issues including financial, legal, housing and employment issues.

Benefit Enquiry Line Northern Ireland

Helpline 0800 232 1271

Textphone 028 9031 1092

www.nidirect.gov.uk/money-tax-and-benefits

Provides information and advice about disability benefits and carers’ benefits in Northern Ireland.

Carer’s Allowance Unit

Tel 0800 731 0297

Textphone 0800 731 0317

www.gov.uk/carers-allowance

Manages state benefits in England, Scotland and Wales. You can apply for benefits and find information online or through its helplines.

Citizens Advice

Provides advice on a variety of issues including financial, legal, housing and employment issues. Use the online webchat or find details for your local office by contacting:

England

Helpline 0800 144 8848

www.citizensadvice.org.uk

Scotland

Helpline 0800 028 1456

www.cas.org.uk

Wales

Helpline 0800 702 2020

www.citizensadvice.org.uk/wales

Equipment and advice on living with a disability

British Red Cross

Tel 0344 871 11 11

www.redcross.org.uk

Offers a range of health and social care services across the UK, such as care in the home, a medical equipment loan service and a transport service.

Disability Rights UK

Tel 0330 995 0400 (not an advice line)

www.disabilityrightsuk.org

Provides information on social security benefits and disability rights in the UK. Has a number of helplines for specific support, including information on going back to work, direct payments, human rights issues, and advice for disabled students.

Motability Scheme

Tel 0300 456 4566

www.motability.co.uk

The scheme enables disabled people to exchange mobility allowances they have as part of benefits (including the enhanced rate mobility component of Personal Independence Payment) to lease a new car, scooter or powered wheelchair.

Support for young people

Teenage Cancer Trust

Tel 0207 612 0370

www.teenagecancertrust.org

A UK-wide charity devoted to improving the lives of teenagers and young adults with cancer. Runs a support network for young people with cancer, their friends and families.

Young Lives vs Cancer

Tel 0300 330 0803

www.younglivesvscancer.org.uk

Provides clinical, practical, financial and emotional support to children with cancer and their families in the UK.

LGBT-specific support

LGBT Foundation

Tel 0345 330 3030

www.lgbt.foundation

Provides a range of services to the LGBT community, including a helpline, email advice and counselling. The website has information on various topics including sexual health, relationships, mental health, community groups and events.

Live Through This

www.livethroughthis.co.uk

A safe space for anybody who identifies as part of the queer spectrum and has had an experience with any kind of cancer at any stage. Also produces resources about LGBT cancer experiences. LTT runs a peer support group with Maggie’s Barts.

Support for carers

Carers Trust

Tel 0300 772 9600

www.carers.org

Provides support, information, advice and services for people caring at home for a family member or friend. You can find details for UK offices and search for local support on the website.

Carers UK

Helpline (England, Scotland, Wales) 0808 808 7777

Helpline (Northern Ireland) 028 9043 9843

www.carersuk.org

Offers information and support to carers across the UK. Has an online forum and can put people in contact with local support groups for carers.

Disclaimer, thanks and sources

Disclaimer

We make every effort to ensure that the information we provide is accurate and up to date but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication, or third-party information or websites included or referred to in it. Some photos are of models.

Thanks

This booklet has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been approved by our Senior Medical Editor, Dr Samra Turajlic, Consultant Medical Oncologist.

With thanks to: Kerry Bate, Advanced Nurse Practitioner; Mr Amer Durrani, Consultant Plastic and Reconstructive Surgeon; Peta Hughes, Clinical Nurse Specialist; Mr David Mowatt, Oncological Plastic Surgeon; Dr Ruth Plummer, Medical Oncologist; and Dr Ben Shum, Medical Oncologist.

Thanks also to the other professionals and the people affected by cancer who reviewed this edition, and those who shared their stories.

We welcome feedback on our information. If you have any, please contact cancerinformationteam@macmillan.org.uk

Sources

Below is a sample of the sources used in our melanoma information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk

Michielin O, van Akkooi ACJ, Ascierto PA, et al. Cutaneous melanoma: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Annals of Oncology. 2019; 30, 12, 1884-1901 [accessed May 2022].

Michielin O, van Akkooi ACJ, Ascierto PA, et al. ESMO consensus conference recommendations on the management of locoregional melanoma: under the auspices of the ESMO Guidelines Committee. Annals of Oncology. 2020; 31, 11, 1449-1461 [accessed May 2022].

Peach H, Board R, Cook M, et al. Current role of sentinel lymph node biopsy in the management of cutaneous melanoma: A UK consensus statement. Journal of Plastic, Reconstructive & Aesthetic Surgery. 2020; 73, 1, 36-42 [accessed May 2022].

Can you do something to help?

We hope this eBook has been useful to you. It’s just one of our many publications that are available free to anyone affected by cancer. They’re produced by our cancer information specialists who, along with our nurses, benefits advisers, campaigners and volunteers, are part of the Macmillan team. When people are facing the toughest fight of their lives, we’re there to support them every step of the way.

We want to make sure no one has to go through cancer alone, so we need more people to help us. When the time is right for you, here are some ways in which you can become a part of our team.

5 ways you can help someone with cancer

Share your cancer experience

Support people living with cancer by telling your story, online, in the media or face to face.

Campaign for change

We need your help to make sure everyone gets the right support. Take an action, big or small, for better cancer care.

Help someone in your community

A lift to an appointment. Help with the shopping. Or just a cup of tea and a chat. Could you lend a hand?

Raise money

Whatever you like doing you can raise money to help. Take part in one of our events or create your own.

Give money

Big or small, every penny helps.

Call us to find out more 0300 1000 200

macmillan.org.uk/getinvolved