Adapted in accordance with Section 69 of the Copyright Act 1994 by the Royal New Zealand Foundation of the Blind, for the sole use of persons who have a print disability.
Produced 2010 by Accessible Format Production, RNZFB, Auckland
This edition is a transcription of the following print edition:
Cancer Society of New Zealand Inc.
PO Box 12700, Wellington
Copyright 2010 Cancer Society of New Zealand Inc.
Second Edition 2010
ISBN 0-908933-81-9
Diagrams, pp.4, 5, 6.
Graph, p.15.
Our aim is to provide easy-to-understand and accurate information on cancer and its treatments. Each of our patient information booklets is reviewed and updated by cancer doctors, specialist nurses and other relevant health professionals to ensure the medical information is reliable, evidence-based and up-to-date. The booklets are also reviewed by consumers to ensure they meet the needs of people with cancer.
Some of the information in this booklet is based on information published by the Cancer Council of Victoria. The Cancer Society of New Zealand gratefully acknowledges their assistance.
Advanced Cancer/Matepukupuku Maukaha
Breast Cancer/Te Matepukupuku o ngā U
Bowel Cancer/ Matepukupuku Puku Hamuti
Chemotherapy/Hahau
Complementary and Alternative Medicine
Eating Well/Kia Pai te Kai
Got Water?/He Wai?
Lung Cancer/Mate Pukupuku Pūkahukahu
Melanoma/Tonapuku
Prostate Cancer/Matepukupuku Repeure
Radiation Treatment/Haumanu Iraruke
Secondary Breast Cancer/Matepukupuku Tuarua ā-Ū
Sexuality and Cancer/Hōkakatanga me te Matepukupuku
Understanding Grief/Te Mate Pāmamae
What Do I Tell the Children?/He Aha He Kōrero Maku Ki Āku Tamariki?
Being Active When You Have Cancer
Questions You May Wish to Ask
Talking to a Friend With Cancer
When Someone Has Cancer
When You Have Cancer
Page 1
This booklet has been prepared to provide you with information about melanoma. It provides information about diagnosis, treatment, practical support and the emotional impact of cancer. Melanoma is a cancer of the skin and is the most serious of the three common forms of skin cancer.
In New Zealand, the majority of people are diagnosed with melanoma at an early stage. The outlook for most people diagnosed with early stage melanoma is good.
We hope this information will answer some of your questions and help you think about the questions you want to ask your doctors. We also include information about support services you may like to use.
If you find this booklet helpful, you may like to pass it on to your family and friends for their information. The words in bold are explained in the glossary at the back of the booklet.
Page 2
What is cancer? - Page 4
How cancer spreads - Page 5
The way cancer is treated - Page 6
The skin - Page 6
Epidermis - Page 7
Dermis - Page 7
Skin cancer - Page 7
What is melanoma? - Page 8
Who develops melanoma? - Page 8
Risk factors for melanoma - Page 9
Causes of melanoma - Page 10
Diagnosis - Page 10
How melanoma is diagnosed - Page 11
Other tests - Page 12
Stages of melanoma - Page 13
Measuring the thickness/depth of the melanoma - Page 14
Prognosis - Page 15
Treatment - Page 16
The treatment team - Page 16
Surgery - Page 18
Skin grafts - Page 18
After the operation - Page 19
Sentinel node biopsy and dissection - Page 19
Radiation treatment - Page 20
Side effects of radiation treatment - Page 20
Lymphoedema - Page 21
Chemotherapy - Page 21
Side effects of chemotherapy - Page 22
Immunotherapy - Page 23
Side effects of immunotherapy - Page 23
Palliative treatment for advanced cancer - Page 23
Making decisions about treatment - Page 24
Page 3
Talking with doctors - Page 25
Talking with others - Page 26
A second opinion - Page 26
Taking part in a clinical trial - Page 26
After treatment - Page 28
Check-ups - Page 28
Protecting your skin - Page 29
Support - Page 30
Emotional support - Page 30
Talking with your children - Page 32
Cancer Society information and support services - Page 32
Cancer support groups - Page 33
Home care - Page 34
Financial assistance - Page 34
Interpreting services - Page 34
What can I do to help myself? - Page 35
Diet and food safety - Page 35
Exercise - Page 36
Relaxation techniques - Page 36
Complementary and alternative therapies - Page 36
Seeking advice from health professionals - Page 38
Relationships and sexuality - Page 38
Fertility and contraception - Page 39
Questions you may wish to ask - Page 40
At diagnosis - Page 40
About surgery - Page 41
After treatment - Page 42
General questions - Page 43
Suggested websites - Page 46
Glossary - Page 47
Notes - Page 51
Feedback - Page 55
Page 4
Cancer is a disease of the body's cells. Our bodies are always making new cells to replace worn-out cells, or to heal damaged cells after an injury. This process is controlled by certain genes: the codes that tell our cells how to grow and behave. Cancers are caused by damage to these genes. This damage usually happens during our lifetime, but a small number of people inherit a damaged gene from a parent.
Normally, cells grow and multiply in an orderly way. However, damaged genes can cause cells to behave abnormally. These cells may grow into a lump, which is called a tumour. Tumours can be benign (not cancerous) or malignant (cancerous). Benign tumours do not spread to other parts of the body.
Diagram:
The beginnings of cancer
Transcriber's Note: This is a four step diagram, showing a cross-section of part of a body.
Step 1: Normal cells. On the outside are normal cells. Just below the normal cells is the basement membrane. Below the basement membrane are the lymph vessels, then the blood vessels.
Step 2: Abnormal cells. Some of the normal cells on the surface have become abnormal cells.
Step 3: Abnormal cells multiply (cancer in situ). The number of abnormal cells has increased dramatically, both horizontally and vertically, creating a lump between the normal cells on either side, but they have not spread past the basement membrane.
Step 4: Malignant or invasive cancer. The abnormal cells have broken through the basement membrane and have reached the lymph vessel and blood vessel.
End of Note.
End of Diagram.
Page 5
Diagram:
Transcriber's Note: The diagram shows a cross section of a cancerous part of a body.
On the surface is a lump of abnormal cells which form the primary cancer.
Local invasion. Malignant tumours break through the basement membrane, which lies below the normal cells, into the surrounding tissues.
The tumours spread to the lymph and blood vessels.
When the abnormal cells move away from the primary tumour and spread through these vessels, they may form a metastasis or secondary cancer.
End of Note.
End of Diagram.
A malignant tumour is made up of cancer cells. When it first develops, a malignant tumour may be confined to its original site: a cancer in situ (or a carcinoma in situ). If these cells are not treated, they may spread into surrounding tissues (also known as malignant or invasive cancer) or to other parts of the body. When these cells reach a new site they may continue to grow and form another tumour at that site. This is called a secondary cancer or metastasis.
For a cancer to grow bigger than the head of a pin, it must grow its own blood vessels. This is called angiogenesis.
Page 6
Cancer is treated by surgery, chemotherapy (drug treatment), immunotherapy, hormone treatment or radiation treatment. Sometimes only one of these methods of treatment is used for a cancer. Sometimes more than one is used.
The skin has two main layers.
Diagram:
Transcriber's Note: The figure shows a "cube" of skin divided from top to bottom into three layers.
Epidermis: This is the top layer immediately below the skin surface. Melanocytes run like a ragged ribbon all along the bottom of this layer, separating it from the layer below.
Dermis: This is the second and largest layer. Seven hair roots are shown growing up from here, thinning as they pierce the surface of the skin and protrude above it. One is surrounded by a sebaceous (oil) gland. Two sweat glands can be seen, wrapped tightly in a rough ball formation at their base and snaking upwards to the surface of the skin. Nerves, looking like threads with branching twigs at their top, sway upwards at intervals within this layer.
Subcutaneous layer (fatty layer): This lies at the base of the cube and contains blood vessels and fat cells. The blood vessels look like branching tubes running horizontally along this layer and overlapping one another. Some of their branches extend upwards into the dermis. Packed tightly among the blood vessels are fat cells, which look like hundreds of little beans.
End of Note.
End of Diagram.
Page 7
The top layer is called the epidermis. This layer contains basal cells, squamous cells and melanocytes. Basal and squamous cells are also called keratinocytes, because they produce keratin, the main component of skin, hair and nails. Melanocytes are cells that produce melanin, the pigment that gives skin its colour.
The layer underneath the epidermis is called the dermis. The dermis is composed of fibres (collagen and elastin). The dermis contains the roots of hairs, glands that make sweat and oil, blood vessels, lymph vessels and nerves.
Like all body tissues, the skin is made of tiny 'building blocks' called cells. These cells can sometimes become cancerous when they have been damaged; for example, by ultraviolet (UV) radiation. Skin cancers are named after the type of cell they begin to grow from. The three most common types of skin cancer are basal cell cancer, squamous cell cancer and melanoma.
Page 8
A melanoma is a tumour that develops from melanocytes (pigment cells). Melanoma most commonly occurs in the skin on parts of the body that have been sunburned, but it can appear in skin anywhere on the body. It often appears as a new spot on normal skin but may develop from an existing mole. If detected when they are thin and at an early stage, most melanomas are curable.
Melanomas usually begin as a flat, coloured spot that changes in size, shape, or colour, or becomes raised over months. A less common type of melanoma (called nodular melanoma) is not flat, and is raised from the start. These melanomas grow quickly, are uniform in colour, and may have no colour. Melanoma can start in parts of the body other than the skin but this is rare. The parts of the body that can be affected are:
the eye (ocular melanoma)
the mouth, vulva or vagina (mucosal melanoma)
under fingernails or toenails (subungual melanoma).
Melanoma is most common in people with fair skin. People from ethnic groups with naturally darker skin, for example Māori, Pacific and Asian peoples, have more protection from UV rays. However, Māori, Pacific and Asian peoples can still get melanoma.
Page 9
New Zealand has one of the highest rates of melanoma in the world.
Melanoma is diagnosed most often in older adults but sometimes occurs in younger adults, and occasionally in teenagers. It is rare in children.
Risk factors include:
fair skin and red or fair hair
one or more severe sunburns – especially in childhood and adolescence
use of sunbeds, particularly by young people.
High-risk factors include:
previous skin cancers, including melanoma
a family history of melanoma (in a first degree relative: parent, brother, sister or child)
large, irregularly shaped and unevenly coloured moles called atypical or dysplastic naevi
large numbers of moles.
Page 10
Too much sun, especially sunburn, can cause melanoma. Each time your unprotected skin is exposed to the sun's UV radiation or other sources of UV radiation – such as sunbeds – the UV radiation causes changes to the structure of the cells. Overexposure to UV radiation causes the skin to become permanently damaged. The damage worsens with more UV radiation.
The most important years for sun protection are during childhood and early adult years. Exposure to UV radiation during these years greatly increases the chance of getting melanoma later in life.
The first sign of a melanoma is usually the appearance of a new spot or a change in an existing freckle or mole. The change may be in size, shape and/or colour. The change is normally noticed over several weeks or months rather than days.
A normal freckle or mole usually has an even colour and a smooth edge. A melanoma often has an irregular edge or surface. It may be spotted with brown, black, blue, red, white and/or light grey.
Page 11
A freckle or mole that itches or bleeds by itself is sometimes (but not always) a melanoma. A freckle or mole that becomes larger or irregular in shape may be a melanoma. It is quite normal for new moles to appear and change during childhood and early adulthood.
Melanoma is diagnosed by physical examination and biopsy. Your family doctor will first examine the suspicious spot or mole and other spots and moles you may have. They will ask about your own and your family's history of melanoma. Some doctors use a dermascope (a magnifying device) to look at your skin. The doctor may also feel the lymph nodes near the suspicious spot or mole.
If your doctor suspects that you have melanoma, they will suggest that you have a biopsy, where the mole is removed for examination under a microscope.
This is usually a quick and simple procedure. It may be done by your family doctor or you may be referred to a dermatologist (a skin specialist) or surgeon. The doctor will give you a local anaesthetic and then use a scalpel to remove the mole and some surrounding tissue. You may have stitches to help the wound to heal.
Page 12
The mole that is cut out is sent to a pathology laboratory for examination. It will probably take around a week for the results of your tests to be ready and a follow-up appointment may be arranged. This waiting period can be an anxious time and it may help to talk things over with a family member or close friend.
If the tests show you have melanoma, you may have surgery to remove a wider margin of surrounding skin.
"I'm the type of person to ask questions, they [the team] were really kind — not patronising 'kind'. They were very patient explaining to me."
Silei
If you have melanoma, your doctor may recommend other tests. This is, generally, if the original (primary) melanoma was thicker than 1mm and/or may have more chance of spreading to other parts of the body. The tests may include:
blood tests: to check your general health
a chest X-ray: to check for signs of spread to the lungs
scans: to see if the melanoma has spread to other parts of your body. These may include a liver and abdomen ultrasound scan, a bone scan, a computerised tomography (CT) scan, a positron emission tomography (PET) scan and a magnetic resonance imaging (MRI) scan.
Page 13
Fine needle aspiration; if you have an enlarged lymph node, your doctor may recommend a fine needle aspiration to see if it is due to the spread of melanoma. In a fine needle aspiration, the doctor (often a pathologist) inserts a needle into the node and draws cells into the syringe. The cells are then examined under a microscope to see if they contain melanoma cells.
The stages of melanoma combine the thickness of the melanoma and the extent of the melanoma (this is determined by the results of the surgery and the tests described above).
The stages are:
Stage 0 — (melanoma in situ) abnormal cells are found in the epidermis
Stage 1 — the melanoma is not more than 2mm thick
Stage 2 — more than 2 to 4mm thick with no spread to the lymph vessels or nodes
Stage 3 — any thickness that has spread to lymph vessels or lymph nodes
Stage 4 — the melanoma has spread to other parts of the body.
Knowing the stage helps your doctors plan your treatment. Your doctor will provide more detailed information on the stage of your melanoma when discussing treatment.
Page 14
Two scales are used: Breslow thickness and Clark Level.
Breslow thickness measures the thickness/depth of the melanoma microscopically in millimetres from the top layer of skin to the bottom of the melanoma.
Clark level describes how far melanoma cells have reached through the tissue levels below the skin surface.
Clark Level I (1): melanoma is confined to the epidermis.
Clark Level II (2): melanoma spreads to the upper (papillary) dermis.
Clark Level III (3): melanoma spreads to the mid dermis.
Clark Level IV (4): melanoma spreads into deeper (reticular) dermis.
Clark Level V (5): melanoma spreads through the full thickness/depth of the dermis and extends into subcutaneous tissue (under the skin).
Ulceration (breaking the skin's surface) is also considered when staging a melanoma.
Page 15
Graph:
Transcriber's Note: The graph is visual. It is divided vertically into five sections, corresponding to the Clark levels, I to V, illustrating the progressive stages of melanoma.
The vertical axis is labelled "Breslow: Depth of Invasion (mm)". It is marked in 0.2 intervals, except where the division (mid dermis) between the papillary dermis and the reticular dermis occurs (0.76), and goes from 0 at the top to 2 at the bottom. It is also divided on the right side into four sections, from top to bottom: epidermis; papillary dermis; reticular dermis; and subcutaneous tissue.
The horizontal axis is labelled "Clark level". It is divided evenly into five levels, I to V.
The data from the graph are presented in the following table. All data are approximate. End of Note.
Table:
|
Breslow Depth of
|
Layer Level |
Clark Level |
|---|---|---|
|
0.2 - 0.4 |
Epidermis |
I |
|
0.1 - 0.4 |
Epidermis - Papillary dermis |
II |
|
0.2 - 0.76 |
Papillary dermis - Mid dermis |
III |
|
0.2 - 1.2 |
Papillary dermis -Reticular dermis |
IV |
|
0 - 1.6 |
Epidermis -Subcutaneous tissue |
V |
End of Table.
End of Graph.
Melanoma is most likely to be cured when the melanoma is diagnosed and treated in its early stages.
Box:
More than 85 percent of people diagnosed with melanoma 15 years ago are alive and well today with no sign of the disease. This percentage has grown steadily over the years with early detection and treatment; so more people can expect to be cured.
End of Box.
Other factors can influence your prognosis. For example, melanomas on the limbs have a better prognosis than those on the trunk, head or neck. Overall, women seem to fare better than men, although it is unclear just why this is the case.
Page 16
You will need to talk with your doctor about your own prognosis. Your medical history is unique, so you will need to discuss this with someone who knows your medical history.
Most melanomas are found at an early stage and are treated by surgery alone.
Your doctor will advise you on the best treatment for your melanoma. This will depend on its thickness, how far it has spread, your general health, your age and your wishes.
For more advanced melanoma, treatments may include radiation treatment, chemotherapy and immunotherapy. You may have one of these treatments, or a combination (see the radiation treatment, chemotherapy and immunotherapy section on pages 20-23).
From the time that you are first diagnosed with melanoma, you may be cared for by one or more of a team of health professionals including:
your family doctor, who will often be the first person you see
dermatologists, who specialise in the diagnosis and treatment of skin disorders
Page 17
surgeons, who specialise in surgery. You may see a plastic surgeon, who reconstructs affected parts of the body.
If you need further treatment your team may include:
medical oncologists, doctors who are responsible for chemotherapy and other aspects of cancer care
radiation oncologists, doctors who specialise in the use of radiation in the treatment of cancer
radiation therapists, people who prepare you and give your radiation treatment
oncology nurses, who will help you through all stages of your cancer experience
dieticians, who will recommend the most suitable foods to eat
social workers, physiotherapists and occupational therapists, who will advise you on the support services that are available and help you get back to normal activities.
Ideally, your hospital will have all available means of diagnosis and treatment, although this may not be possible in some rural areas.
Page 18
Melanomas are usually removed by surgery. The melanoma is cut out, along with a small area of normal-looking skin from around the melanoma called the margin. If the melanoma is at an early stage, the whole melanoma is removed at the initial biopsy. In many cases more surgery may be required to remove a wider margin of surrounding skin. This increases the likelihood that all the melanoma cells have been removed.
These procedures are usually done under local anaesthetic as a day procedure, but it may require admission to hospital and a general anaesthetic. In most cases, the wound can be stitched together and will heal as a straight scar.
Sometimes, a skin graft is required to cover the wound. For the graft, the surgeon will take a layer of skin from another part of your body and place it over the wound.
The other possibility is a 'flap', where the surgeon will close the wound using a nearby flap of skin. Either way, the wound will be covered with a dressing and left undisturbed for several days. It will then be checked to see if it is healing properly. You will also have dressings on any area from which the skin was taken for a graft.
Page 19
You may be uncomfortable for some days after your operation. If you have pain, your doctor should prescribe painkillers for you. If you have a skin graft, the area where the skin is grafted may look unattractive immediately after the operation. Eventually this should heal and the redness will fade. There is a small risk of infection, haematoma (bruising) and scarring following surgery for melanoma. Occasionally, the skin graft fails.
The majority of people treated for early stage melanoma have surgery only.
If your melanoma is more than 1 mm in thickness, your surgeon may suggest you have a sentinel node biopsy at the time of your surgery. A sentinel node biopsy locates the first lymph node that drains from the area where the melanoma developed. This node is detected after injecting a blue dye and a radioactive tracer into the skin where the melanoma was removed. The first lymph node this reaches is then removed surgically so that the node can be examined. If melanoma cells are found in the node/s, the entire group of nodes in that area may be surgically removed (known as a Block dissection).
Page 20
Radiation treatment uses radiation to kill melanoma cells. The radiation can be precisely targeted onto melanoma sites in your body. Treatment is carefully planned to do as little harm as possible to your normal body tissue. It may be given to shrink the tumour and/or to reduce the likelihood of recurrence within the area being treated.
The treatment is usually given over several weeks. The length of treatment will depend on the size and type of the cancer and on your general health.
Side effects of radiation treatment depend on the part of the body being treated. Radiation treatment for melanoma usually involves treatment to the skin and nearby lymph nodes. Side effects may include skin reddening similar to sunburn. Other effects may occur, depending on where your treatment is. Talk with your doctor or the radiation treatment staff about any possible side effects and how to manage them. Follow the skincare advice given to you by your treatment team.
"It's like an X-ray machine. No worries. You've got a comfortable room, music going, then it's over."
Milly
Page 21
A potential side effect of a lymph node removal and/or radiation treatment to lymph nodes is lymphoedema. Lymphoedema is a swelling in the part of the body drained by the affected lymph nodes.
The best treatment for lymphoedema is a specialised programme of exercise, massage, skin care and a properly fitted support garment or bandage. Contact your local Cancer Society for information on prevention of lymphoedema and details of lymphoedema therapists available in your area.
This is the treatment of cancer with special anti-cancer drugs. The aim is to destroy all cancer cells while doing the least possible damage to normal cells. The drugs work by stopping cancer cells from growing and reproducing.
Chemotherapy can be given before or after surgery and is usually given by injecting the drugs into a vein (intravenous treatment). There are other ways of having chemotherapy, including tablets. For multiple melanoma nodules confined to the limb, chemotherapy may be given directly into the limb blood vessel. This is called limb infusion/perfusion.
Chemotherapy is occasionally used as palliative treatment for melanoma that cannot be treated by other methods. Currently, chemotherapy does not often cure melanoma.
Page 22
Some drugs used in chemotherapy can cause side effects. The side effects are specific to the chemotherapy drug(s) chosen. They may include the risk of infection, feeling sick (nausea), vomiting, feeling 'off-colour' and tired, and some thinning or loss of hair from your body and head. Generally, these side effects are temporary. Talk to your treatment team about how to manage them.
"I used numbers. I had 30 days of chemo treatment. I used it like a football score. It was 1.29 tomorrow, then it was 2.28, 3.27, and as I got over half way I started to come right."
Reg
Box:
If you develop a fever (have a temperature of 38 degrees celsius or over), or you feel unwell, even with a normal temperature, don't wait to see what happens. Phone your cancer treatment centre, oncologist, oncology nurse or hospital immediately for advice.
End of Box.
Page 23
Most of the current research into melanoma is in the area of immunotherapy.
Immunotherapy is a treatment to stimulate the body's normal cells to attack cancer cells. It encourages the body's natural defence system (the immune system) to attack cancer cells. Biological therapy is another name for immunotherapy. Clinical trials are testing the effectiveness of other types of immunotherapy such as vaccines. Ask your doctor if you are eligible for a clinical trial.
Interferon is currently the most commonly used immunotherapy treatment in New Zealand for melanoma that has a higher risk of reoccurrence. It is given by injection. The most common side effects are flu like symptoms and fatigue.
Palliative treatment relieves or reduces symptoms of illness, including pain. It aims to improve quality of life. General practitioners, specialists and palliative care teams in hospitals or hospices all provide palliative treatment for people with cancer.
Page 24
If you are offered a choice of treatment, including no treatment for now, you will need to weight the advantages and disadvantages.
You may want to ask your doctor questions like:
What is the aim of the treatment?
Can I expect to live longer if I have treatment?
If I have treatment, is there a risk that my quality of life could worsen because of the side effects?
Are there other treatments for me?
What is the probability of it working?
Complementary and alternative treatments are discussed on page 36 to 37.
"At first I wondered if ignorance was bliss, but after a week I thought 'No'. It's my body and I want to know what is going to happen, and I want to know if I make a decision what will happen."
Silei
Page 25
Before you see the doctor, it may help to write down your questions.
There is a list of questions on melanoma on pages 40 to 45 of this booklet that you may find helpful to read and take along to your appointment with your oncologist. Taking notes during the session can also help. It is helpful to take a family member or friend with you to take part in the discussion, take notes or simply listen. Some people find it is helpful to record the discussion.
Ask your local Cancer Society or call our Cancer Information Helpline 0800 CANCER (266 237) for a copy of Questions you may wish to ask. The booklet has 23 frequently asked questions to ask your health professionals. The questions are designed to help you get information about your cancer and to make treatment decisions with your doctor and family/whānau. A space is provided under each question for you, your support person or doctor to write the answer. The booklet is available in 12 languages (including English).
You may want to see your doctor a few times before making a final decision on treatment. It is often difficult to take everything in, and you may need to ask the same questions more than once. You always have the right to find out what a suggested treatment means for you, and the right to accept or refuse it.
Page 26
Once you have discussed treatment options with your doctor, you may want to talk them over with someone else, such as family or friends, your family doctor, the Cancer Society, the hospital social worker or chaplain, your own religious or spiritual adviser, or another person who has had melanoma. Talking it over can help to sort out what course of action is right for you.
You may want to ask for a second opinion. Your doctor can refer you to another specialist and you can always ask for your records to be sent to the second doctor.
Research into the causes of melanoma and ways to prevent, detect and treat melanoma continues. Your doctor may suggest that you consider taking part in a clinical trial.
Clinical trials are a vital part of the search to find better treatments for cancer. They are done to test new or modified treatments and see if they are better than existing treatments. Many people all over the world have taken part in clinical trials that have resulted in improvements to cancer treatment. The decision to take part in a clinical trial is always yours.
If you are asked to take part in a clinical trial, make sure that you fully understand the reasons for the trial and what it means for your treatment.
Page 27
Before deciding whether or not to join the trial, you may wish to ask your doctor:
Which treatments are being tested and why?
Which tests are involved?
What are the possible risks or side effects?
How long will the trial last?
Will I need to go into hospital for treatment?
What will I do if any problems occur while I am in the trial?
If the treatment I receive on the trial is successful for my cancer, is there a possibility of carrying on with the treatment after the trial?
If you decide to join a randomised clinical trial, you will be given either the best existing treatment or a promising new treatment. You will be chosen at random to receive one treatment or the other, but either treatment will be appropriate for your condition.
In clinical trials, people's health and progress are carefully monitored. If you do join a clinical trial, you have the right to withdraw at any time. Doing so will not affect your treatment for melanoma. It is always your decision to take part in a clinical trial. If you do not want to take part, your doctor will discuss the best current treatment choices with you.
Page 28
Following your treatment, you will need to have regular check-ups. As well as a physical examination of your skin, an important part of your regular check-up will be an examination of your lymph nodes. This is one way of finding out if the melanoma has spread. The entire skin surface should be examined under a good light. Your doctor may use a dermascope (a hand-held magnification device) to look closely at the skin.
It's important that you be shown how to check your own skin and to do it regularly.
If you notice any changes in your skin or in your general health, contact your doctor.
Your doctor will decide how often you will need check-ups. They will gradually become less frequent if you have no further problems. Ongoing check-ups may be recommended for life. People who have had one melanoma are at increased risk of another melanoma in the future.
Family risk – it may be helpful for all immediate family members to have a full skin check. If you have close relatives who have had melanoma, talk to your GP about your family's risk. You may be referred to a Genetics Service.
When your treatment is over, you may find it helpful to continue in or join a cancer support group to help you through the months ahead.
Page 29
If you have had melanoma, protect your skin from strong sunlight all year round.
Box:
Never allow your skin to burn. Don't rely on sunscreen alone. UVR levels are particularly high between September and April.
End of Box.
Use a combination of ways to protect your skin:
Stay out of the sun at times when UV radiation is high.
Wear sun-protective clothing; for example, long sleeve shirts with collars and longer pants.
Protect your face, neck, and ears with a broad-brimmed hat.
Always wear a broad spectrum SPF 30+ sunscreen on skin that is not covered.
To protect your eyes from UV radiation, always wear UV protective sunglasses in strong sunlight.
Stay in shade as much as possible when outdoors.
Never use sunbeds, tanning booths or tanning lamps. If you have had melanoma, and are concerned about your vitamin D levels (the main source is sunlight) talk to your doctor.
Page 30
People react in different ways when they learn they have melanoma. Feelings can be muddled and change quickly. This is quite normal and there's no right or wrong way to feel. It may be helpful to talk about your feelings with your partner, family members, friends, or with a counsellor, social worker, psychologist or your religious/spiritual adviser.
Sometimes you may find your family and friends do not know what to say to you; they may have difficulty with their feelings as well. Some people may feel so uncomfortable that they avoid you. They may expect you to lead the way and tell them what you need. You may feel able to approach people directly and tell them what you need, or you may prefer to ask a close family member or friend to talk to other people for you.
"I believe it's important to encourage people with cancer not to 'bottle up' their feelings and feel free to express them. Reading this booklet will help people to express themselves, and alleviate feelings of helplessness and despair by empowering them with some control over their diet, exercise and relaxation."
Rae
Page 31
Anyone you tell needs time to take it in and to come back with his or her questions. You can help them to adjust, just as they can help you. Remember that while you are having treatment your needs should come first.
When someone is diagnosed with cancer, routines and family roles may change. The person who was the major source of income might now be unable to work and may be dependent on others. A partner who was sharing chores may now have to take on extra tasks or get a job. Maintaining your usual social life, hobbies and interests may be difficult or impossible for a while.
Cancer is not a normal event, so it is important to acknowledge this and to not try to carry on with everything as before. Here are some ideas to make things simpler:
Prepare simpler meals.
Be more relaxed about housekeeping standards.
Ask your family to help more around the house.
"I said to them, 'Look, you just have to support me now. It's my time.' It was role reversal."
Silei
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How much you tell children will depend on how old they are. Young children need to know that it is not their fault that you have cancer. They also need to know that you may have to go into hospital. Slightly older children can probably understand a simple explanation of what is wrong. Adolescent children can understand much more. Children like to know what will happen to them while you are in hospital, who will look after them and how their daily life will be affected.
Sometimes children rebel or become quiet. You may find it helpful to talk to the school counsellor or a hospital social worker.
The Cancer Society has a booklet about talking with your children about cancer. Contact your local Cancer Society office or call the Cancer Information Helpline 0800 CANCER (226 237) for a copy of What do I tell the children?/He aha he korero maku kī aku tamariki? You can also read it online or print it out from our website: (www.cancernz.org.nz).
Your local Cancer Society can provide information and support. The Cancer Information Service is a Cancer Society service where you can talk about your concerns and needs with specially trained nurses. Call your local Cancer Society and speak to support services staff or phone the Cancer Information Helpline 0800 CANCER (226 237).
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Local Cancer Society centres offer a range of services for people with cancer and their families. These may include:
volunteer drivers providing transport to treatment
accommodation while you're having treatment
support and education groups.
The range of services offered differs in each region, so contact your local centre to find out what is available in your area.
"When I was diagnosed I was very frightened and vulnerable to misinformation and suggestion by well-meaning people. I wanted, and mostly got, information and positive encouragement, which gave me hope."
Phil
Cancer support groups offer mutual support and information to people with cancer and their families/whānau. It can help to talk with others who have gone through the same experience. Support groups can also offer many practical suggestions and ways of coping. Ask your hospital or local Cancer Society for information on cancer support groups in your area.
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Nursing care is available at home through district nursing or your local hospital — your doctor or hospital can arrange this.
You may be entitled to assistance with household tasks during your treatment. For information on the availability of this assistance, contact your hospital social worker or the District Nursing Service at your local hospital.
Help may be available for transport and accommodation costs if you are required to travel some distance to your medical and treatment appointments. Your treatment centre or local Cancer Society can advise you about what sort of help is available. Financial help may be available through your local Work and Income office.
Work and Income (0800 559 009) has pamphlets and information about financial assistance for people who are unable to work. Short-term financial help is available through the Sickness Benefit and longer-term help is provided through the Invalids Benefit. Extra help may be available; for example, accommodation supplements and assistance with medical bills.
New Zealand's Health and Disability Code states that everyone has the right to have an interpreter present during a medical consultation. Family or friends may assist if you and your doctor do not speak the same language, but you can also ask your doctor to provide an interpreter if using family members is inappropriate or not possible.
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Many people feel that there is nothing they can do when they are told they have cancer. They feel out of control and helpless for a while. However there are practical ways you can help yourself.
A balanced, nutritious diet will help to keep you well and able to cope with any side effects of treatment. The Cancer Society's booklet Eating Well/Kia Pai te Kai provides useful advice about eating well during treatment. Phone your local Cancer Society office or call the Cancer Information Helpline 0800 CANCER (226 237) for a copy. You can also read it online or print it out from our website: (www.cancernz.org.nz).
Food safety is of special concern to cancer patients, especially during treatment, which may suppress immune function. To make food as safe as possible, it is recommended that patients follow the guidelines:
Wash your hands thoroughly before food preparation and eating.
Handle raw meat, fish, poultry and eggs with care. Clean thoroughly any surfaces that have been in contact with these foods.
Keep raw meats separate from cooked food.
Cook meat, poultry and fish thoroughly and use pasteurised milk and juices.
Refrigerate food promptly to minimise bacterial growth.
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When eating in restaurants avoid foods that may have bacterial contamination, such as sushi and raw or undercooked meats, fish, poultry and eggs, and food from salad bars.
If there is any concern about the purity of your water - for example, if you have tank water - have it checked for bacterial content.
Research has indicated that people who keep active cope better with their treatment. Discuss with your doctor what exercise is best for you.
Some people find relaxation or meditation helps them feel better. The hospital social worker, nurse or your local Cancer Society may know whether the hospital runs any relaxation programmes, or might be able to advise you on local community programmes.
Complementary therapy is a term used to describe any treatment or therapy that is not part of the conventional treatment of a disease. It includes things like:
acupuncture
Māori medicine, such as rongoa and mirimiri (medicine and healing therapies)
relaxation therapy/meditation
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yoga
positive imagery
spiritual healing/cultural healing
art
aromatherapy/massage.
Complementary methods are not given to cure disease, but they may help control symptoms and improve wellbeing.
Alternative therapy is a term used to describe any treatment or therapy that may be offered as an alternative to conventional treatments. It includes things like:
homeopathy
naturopathy
Chinese herbs.
Alternative treatments are sometimes promoted as cancer cures. However, they are unproven, as they may not have been scientifically tested, or, if tested, they were found to be ineffective.
It is important to let your doctor know if you are taking any complementary or alternative therapies because some treatments may be harmful if they are taken at the same time as conventional treatments.
For more information on complementary and alternative medicines (CAM), ask you local Cancer Society for the booklet Complementary and Alternative Medicines: A guide for people affected by cancer.
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If you feel uncomfortable or unsure about your treatment, it is important that you discuss any concerns with those involved in your care, including your general practitioner.
For some people, having cancer and treatment for it have no effect on their sexuality. However, the anxiety and/or depression felt by some people after diagnosis or treatment can affect their sexual desire. We are all sexual beings and intimacy adds to the quality of our lives. Cancer treatment and the psychological effects of cancer may affect you and your partner in different ways.
Some people may avoid intimate contact because they are exhausted by treatment. Others may feel an increased need for sexual and intimate contact for reassurance.
Communication and sharing your feelings can result in greater openness, sensitivity and physical closeness between you both.
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Sexual intercourse is only one of the ways that you can express affection for each other. Gestures of affection, gentle touches, cuddling and fondling can also reassure you of your need for each other. Talk to someone you trust if you are experiencing ongoing problems with sexual relationships. Friends, family members, nurses or your doctor may be able to help. Your local Cancer Society can also provide information about counsellors who specialise in sexual counselling.
You may become infertile, either temporarily or permanently, during treatment. Talk to your doctor about this before you start treatment.
Despite the possibility of infertility, contraception should be used (if the woman has not gone through menopause) to avoid pregnancy because there is a risk of miscarriage or birth defects for children conceived during treatment. If you are pregnant now, talk to your doctors about it straight away.
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Ask as many questions as you want to. It's easy to forget the questions you want to ask when you see your specialist or nurse, so write them down as you think of them and take your list with you to your appointment. Here are some questions you may like to ask:
Transcriber's Note: Three solid lines are inserted after each question for you to write on. End of Note.
What treatment do you advise for my melanoma and why?
Will my treatment be performed by a doctor who specialises in melanoma?
Has my melanoma spread? If so, where to?
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What are my chances of cure?
What is the thickness/depth of my melanoma?
Has the whole melanoma been removed with a margin of normal cells around it? If not, what is the timeframe for further surgery?
What are the advantages and disadvantages of sentinel node biopsy?
If I need a sentinel node biopsy can I get one locally?
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Do I need any scans before surgery?
Are there other treatment choices for me? If not, why not?
Are there any clinical trials of new treatments that I should know about?
Who should I see to have a skin check?
Who will manage my regular follow-up checks?
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What are the risks and possible side effects of each treatment?
What if I don't have any treatment?
Will I have to stay in hospital, or will I be treated as an outpatient?
How long will the treatment take?
How much will it affect what I can do?
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How much will it cost if I decide to be treated privately?
Will I have a lot of pain with the treatment? If so, what will be done about this?
If I need further treatment, what will it be like and when will it begin?
Will the treatment affect me sexually or physically?
Will I be able to do normal things?
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Are there any problems I should watch out for?
I would like to have a second opinion. Can you refer me to someone else?
Is my cancer hereditary?
If there are answers you do not understand, feel comfortable to say:
Can you explain that again?
I am not sure what you mean by ...
Would you please write that down or draw a diagram.
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This booklet is part of a series called Understanding Cancer, which is published by the Cancer Society. These booklets and booklets from the Living with Cancer series can be viewed on our website: (www.cancernz.org.nz). The following websites also have information on melanoma:
New Zealand Guidelines Group (NZ)
www.nzgg.org.nz
Melanoma Foundation of New Zealand (NZ)
www.melanoma.org.nz
Macmillan Cancer Support UK
www.macmillan.org.uk
Cancer Council of Victoria (Australia)
www.cancervic.org.au
National Cancer Institute (USA)
www.cancer.gov/cancerinfo
The suggested websites are not maintained by the Cancer Society of New Zealand. We suggest only sites we believe offer credible and responsible information but we cannot guarantee that the information on such websites is correct, up-to-date or evidence-based medical information.
We suggest you discuss any information you find with your cancer care health professionals.
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Most of the words listed here are used in this booklet; others are words you are likely to hear used by doctors and other health professionals who will be working with you.
anaesthetic–a drug given to stop a person feeling pain. A 'local' anaesthetic numbs part of the body, usually the skin; a 'general' anaesthetic causes temporary loss of consciousness.
benign–not cancerous – benign cells are not able to spread elsewhere in the body.
biopsy–the removal of an amount of cells or tissue from the body, so that it can then be examined under a microscope.
carcinoma in situ–a malignant tumour that is confined to its original site.
cells–the 'building blocks' of the body. A human is made of millions of cells, which are adapted for different functions. Cells are able to reproduce themselves exactly, unless they are abnormal or damaged, as are cancer cells.
computerised tomography (CT) scan–previously known as a CAT scan. A series of X-rays that are built to give a picture of the part X-rayed.
dermis–one of two main layers that make up the skin. The dermis is the second layer, which contains the roots of hairs, glands that make sweat, blood vessels, lymph vessels and nerves.
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epidermis–one of two main layers that make up the skin. The epidermis is the surface layer, which contains basal cells, squamous cells – which contain keratin, a protective substance that resists heat, cold and the effects of many chemicals – and melanocytes that produce melanin.
genes–the codes contained in DNA in each cell that control the way the body's cells grow and behave. Each person's cells have a set of many thousands of genes inherited from both parents.
haematoma–an accumulation of blood in the tissues that clots to form a solid swelling.
immune system–the body's natural defence system. It helps to protect us against anything it recognises as being an 'invader' or 'foreign'; for example, bacteria, viruses, transplanted organs and tissues, cancer cells and parasites.
lymph nodes/lymph vessels/lymphatic system–lymph nodes are small, bean-shaped structures which are part of the lymphatic system. The lymphatic system is part of the immune system, which protects the body against 'invaders', such as bacteria and parasites. It is a network of small lymph nodes connected by very thin lymph vessels, which branch into every part of the body. The lymph nodes filter the lymph to remove bacteria and other harmful agents, such as cancer cells.
magnetic resonance imaging (MRI) scan–similar to a CT scan, but this test uses magnetism instead of X-rays to build up cross-sectional pictures of the body.
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malignant–a tumour that is cancerous and likely to spread if not treated.
melanin–the brown pigment, produced by melanocytes, which gives the skin its colour. Its role is to protect the body against the damaging effect of the ultraviolet rays present in sunlight and tanning machines. People with dark skin have more melanocytes than fair-skinned people.
melanocytes–cells in the epidermis and elsewhere that produce melanin.
melanoma–cancer of the melanocytes. The cancer usually appears on the skin, but may affect the eye and mucous membranes. Excessive exposure to UV radiation contributes to the development of melanoma on the skin.
metastasis (plural = metastases). Also known as secondary(ies)–tumours or masses of cells that develop when cancer cells break away from the original (primary) cancer and are carried by the lymphatic and blood systems to other parts of the body.
palliative–controlling the symptoms of a disease rather than curing it.
pathologist–a person who works in a laboratory to diagnose disease and understand its nature and cause.
placebo–an inactive substance or preparation given and used in controlled studies, such as clinical trials, to determine the efficacy of medical treatments.
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positron emission tomography (PET) scan–a technique that is used to build up clear and very detailed pictures of the body. The person is injected with a glucose solution containing a very small amount of radioactive material. The scanner can 'see' the radioactive substance. Damaged or cancerous cells show up as areas where the glucose is being taken up.
prognosis–an assessment of the course and likely outcome of a person's disease.
sentinel node–the first lymph node that a tumour drains into through the lymphatic system.
tumour–a new or abnormal growth of tissue on or in the body. Tumours can be benign (not cancerous) or malignant (cancerous).
ultrasound–sound waves of a very high frequency (higher than the human ear can hear). If ultrasound is directed at the body, it is reflected back differently by different types of tissue. In an ultrasound scan, these differences are measured and used to build up pictures of structures in the body. Ultrasound pictures are usually taken by an ultrasound technician, who guides the scanning probe by watching the images on a screen like a television. The pictures recorded will be given to a specialist who will prepare a report, which your own doctor will discuss with you.
ultraviolet (UV) radiation–the part of sunlight that causes sunburn and skin damage. It is also produced by tanning lamps and sunbeds. Ultraviolet radiation is invisible and does not feel hot.
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You might wish to use this space to write down any questions you want to ask your doctors, nurses, or health providers at your next appointment.
Transcriber's Note: Blank page for your notes. End of Note.
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Transcriber's Note: Blank page for your notes. End of Note.
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Cancer Society of New Zealand
0800 CANCER (226237)
www.cancernz.org.nz
National Office
PO Box 12700, Wellington 6144
Telephone: (04) 494-7270
Auckland Division
PO Box 1724, Auckland 1140
Telephone: (09) 308-0160
Covering: Northland
Waikato/Bay of Plenty Division
PO Box 134, Hamilton 3240
Telephone: (07) 838-2027
Covering: Tauranga, Rotorua, Taupo, Thames and Waikato
Central Districts Division
PO Box 5096, Palmerston North 4441
Telephone: (06) 364-8989
Covering: Taranaki, Wanganui, Manawatu, Hawke's Bay and Gisborne/East Coast
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Wellington Division
52-62 Riddiford Street, Wellington 6021
Telephone: (04) 389-8421
Covering: Marlborough, Nelson, Wairarapa and Wellington
Canterbury/West Coast Division
PO Box 13450, Christchurch 8141
Telephone: (03) 379-5835
Covering: South Canterbury, West Coast, Ashburton
Otago/Southland Division
PO Box 6258, Dunedin 9059
Telephone: (03) 477-744.
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We would like to read what you thought of this booklet: whether you found it helpful or not. If you would like to give us your feedback, please fill out this questionnaire, cut it out, and send it to the Information Manager at the address at the bottom of the following page.
Transcriber's Note: Three solid lines are inserted after the following six numbered questions for you to write on. Tick boxes are indicated by the words Tick box. End of Note.
1. Did you find this booklet helpful?
Yes – tick box
No – tick box
Please give reason(s) for your answer.
2. Did you find the booklet easy to understand?
Yes – tick box
No – tick box
Please give reason(s) for your answer.
3. Did you have any questions not answered in the booklet?
Yes– tick box
No – tick box
If yes, what were they?
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4. What did you like the most about the booklet?
5. What did you like the least about the booklet?
6. Any other comments?
Personal information (optional)
Are you a person with cancer, or a friend/relative/whānau?
Transcriber's Note: One solid line is inserted here for you to write on. End of Note.
Gender: Female – tick box
Male – tick box
Age
Ethnicity (please specify):
Thank you for helping us review this booklet.
The Editorial Team will record your feedback when it arrives, and consider it when this booklet is reviewed for its next edition.
Please return to: The Information Manager, Cancer Society of New Zealand, PO Box 12700, Wellington 6144.
Inside back cover
The Cancer Society of New Zealand offers information and support services to people with cancer and their families. Printed materials are available on specific cancers and treatment.
The Cancer Society is a major funder of cancer research in New Zealand. The aim of research is to determine the causes, prevention, and effective methods of treating various types of cancer.
The Society also undertakes health promotion through programmes such as those encouraging SunSmart behaviour, being physically active and eating well and discouraging smoking.
Many Cancer Society services would not be possible without the generous support of many New Zealanders. You can make a donation by phoning 0900 31 111, through our website at www.cancernz.org.nz or by contacting your local Cancer Society.
The Cancer Society would like to thank for their reviews, advice and contributions:
Consumer reviewers
The Cancer Society wishes to acknowledge the input and expertise of our consumer reviewers
Associate Professor Chris Atkinson
Medical Director, Cancer Society of New Zealand; Chair, Cancer Control Council; Radiation Oncologist, St George's Cancer Care Centre, Christchurch
Dr Chris Boberg
Family Doctor and General Practitioner with specialised interest in the early detection and management of melanoma and skin cancer, North Shore, Auckland
Sue Clark
Health Promoter, Canterbury/West Coast Division, Cancer Society, Christchurch
Dr Mark Foley
General Practitioner, North Shore and ProCare Network North, Auckland
Dr Bernie Fitzharris
Medical Oncologist, Christchurch Hospital
Dr Judith Galtry
Skin Cancer Advisor, National Office, Cancer Society, Wellington
Mr Richard Harman
General and Melanoma Surgeon, North Shore Hospital and Waitemata Surgeons, Auckland
Betsy Marshall
Melanoma Network of New Zealand (MelNet) Co-ordinator and New Zealand Guidelines Group, Auckland
Dr Amanda Oakley
Clinical Director, Department of Dermatology, Waikato Hospital, Hamilton
Professor Marius Rademaker
Department of Dermatology, Waikato Hospital, Hamilton
Dr Tony Reeder
Senior Research Fellow, Cancer Society Social and Behavioural Research Unit, Otago University, Dunedin
Meg Biggs, Julie Holt, Michelle Gundersen-Reid
Cancer Society Information Nurses
Sarah Stacy-Baynes
Information Manager
Cancer affects New Zealanders from all walks of life, and all regions of our beautiful country. This cover photo is the Manukau Harbour entrance from Whatipu Beach, (Paratutae Island at the left, Pingao sand dune plants in the foreground) Auckland, Waitakere City District was taken by Rob Suisted.
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the publisher.
Back cover
www.cancernz.org.nz
Any Question, Any Cancer
0800 cancer (226 237)
Cancer Information Helpline
End of "Melanoma / Tonapuku"