Patients and their families need information to help them understand and cope with the diagnosis of melanoma, the treatment options and possible outcomes.

10.1 Feedback from patients

Twelve focus groups with melanoma patients in three different areas of Scotland were held in July and August 2002. To protect patient confidentiality clinicians wrote to patients directly asking them to contact SIGN if they were interested in taking part in a focus group. An external consultant led each group and SIGN Executive staff took notes. All focus group participants agreed to the discussions being recorded on audiotape for the purposes of analysis. A total of 75 people attended the groups, 27 men and 48 women.

The key messages from the focus group reports were fed back to the guideline development group and guided both the good practice points in this section and The Notes For Discussion With Patients and Example Patient Information Leaflet (sections 10.5 and 10.7).

10.2 Key messages from patient focus groups

Diagnosis

Most patients would prefer the diagnosis to be given face to face, with exceptions in the interest of receiving the diagnosis in a speedy manner. Diagnoses given on answerphones, via letters that arrived at the weekend, or by ‘phone calls to the workplace were generally unacceptable.

Information giving at diagnosis

Many people reported that their minds “went blank” at diagnosis, and that some basic written information to take away (including definitions of terms), and scheduling a follow up appointment shortly afterwards to answer patients’ and/or families’ questions would be helpful.

Information giving throughout the journey of care

The best approach is a mix of verbal and written information. The level of detail required is personal and varies from patient to patient. Information for family and friends is also required.

Patient anxiety

Most reported profound anxiety as a result of a cancer diagnosis, with no clear time limit when this fades. Patients had many unanswered questions, such as: What caused my melanoma? What is melanoma? How can I prevent it in the future? What changes should I make in my life? How do I break this news to partners, families and friends?

Frequency of follow up

Every three months in the first year then every six months in or after the second year were perceived to be adequate follow up schedules for most patients. After year two, most patients are happy to be seen annually or to be discharged with open access back to see a specialist if required: specialists should make it clear to patients to get in touch if they are worried.

Which clinician?

Patients in various locations reported seeing different clinicians: general practitioners, surgeons, oncologists and dermatologists. Some patients reported having had no contact with a dermatologist. Many patients reported feeling ill-equipped to check their own skin and felt confused and anxious about this. Many patients felt that they had been rushed through appointments. The majority of patients liked the idea of having access to a specialist nurse who could spend more time with them and who could also have a psychological counselling role.

10.3 Information provision

An RCT of stage I melanoma patients suggests that a structured information programme to inform patients about melanoma progression and treatment options increased patients’ knowledge of the disease, the risk factors involved and possible preventative measures.²⁵⁸ The study reported no difference in psychological variables. A second RCT found that facilitated education programmes for stage I and II melanoma patients, in which one element was an information programme in relation to cancer recurrence, had a positive effect on coping behaviour and affective distress values.²⁵⁹ A prospective cohort study with patients with metastatic disease found that patients who understood the expected outcomes of their disease had higher quality of life scores and longer survival periods.²⁶⁰ Evidence level 1-,1+,2

The provision of information to patients increases their knowledge of the disease, can enhance coping behaviour and reduce levels of affective distress. Evidence level 2+

Patients should receive targeted information throughout their journey of care.

Healthcare professionals working with cancer patients should have training in communication skills.

10.4 Patient support groups

Patients benefit from psychoeducational interventions provided in a structured group, facilitated by qualified personnel.^{258, 259, 260, 261} The studies suggest that facilitated groups can help patients cope better at all stages of the disease, increase knowledge levels and reduce affective distress. Evidence level 1+

Health service patient support groups should be structured, facilitated by trained professionals and incorporate health education.

Information on all patient support groups should be made easily available to patients.

10.5 Notes for discussion with patients

The following points were drawn up by the guideline development group using the feedback from the focus groups held with patients (see section 10.1). These notes may be of use to health professionals when discussing melanoma with patients and carers. They may also be useful in guiding the production of local patient information materials. The advice is divided into sections to highlight the issues that patients and carers might wish to discuss at each stage of care.

PREDIAGNOSIS

‘The information that I got was really very factual about what it is and what will happen now and I found that very helpful ‘cause I got it before the diagnosis and they told me that it could’ve been malignant and so I was expecting it and I knew what would come next and I was quite fine with that.’ (patient quote)

• How long will it be before the results are back?
• How will I receive my diagnosis?
• If the results are negative, how likely is it that I may get skin cancer in the future?
• How accurate are the test results?
• How will I be given the results?
• What happens next if it is cancer?
• Where can I get more information in the meantime and who can I speak to?

DIAGNOSIS

‘When I went out I said to the nurse “what’s a melanoma?’’.’

‘I think a good simple leaflet would’ve been good at the time and then maybe a recommended website, I’m always kind of wary going into websites, you want something that’s recommended by them, a good website.’

‘I wanted to know how not to make it happen again.’ (patient quotes)

• What is melanoma?
• What does malignant mean?
• What caused it?
• Why did this happen to me – I’m not a sun worshipper and never have been?
• Who can I talk to?
• What are my treatment options?
• Where can my family and I find more information?
• n Are my family and/or other relatives likely to get melanoma?
• How will I tell my family? Can I get help to do this?
• How long will treatment go on for?
• Will it be painful treatment?
• Am I going to die?

TREATMENT

• What is involved in the surgery?
• What are the types of surgery and their success rates?
• How long will I need to wait?
• What happens after surgery?
• Will the scarring be bad? Will I need skin grafts? Where will these be taken from?
• Will I get all my treatment here, or will I have to go somewhere else? Where will that be?
• How do I get to that hospital?
• Will I have to see lots of different doctors, or will it be the same one?
• Which specialists am I likely to see?
• If I want to ask questions who should I ‘phone? What’s the ‘phone number?
• How long will my treatment last?
• Will I be able to drive to and from hospital?
• Will I be able to carry on working? How much sick leave will I need?
• Am I entitled to any benefits (if I have to stop work for a long time)? Who do I ask?
• What are the side effects of chemotherapy?
• When will I know if I am cured?

FOLLOW UP

‘I would like to be on top of the facts and to be in control of the situation so that I know what I’m looking for and know what to do to prevent it as far as is possible.’ (patient quote)

• How often will I be followed up and for how long?
• Who will I see in the clinic?
• What should I do if I am worried in between hospital appointments?
• How is my GP involved?
• Can I ‘phone someone in the clinic?
• How do I check my skin in between visits? What am I looking for?
• What is a body map?
• Why do some patients have photographs taken?
• How can I check my back if I live alone or if my partner feels uncomfortable helping me?
• Can melanoma come back somewhere I can’t see it?
• Can I still go out in the sun?
• Can I still holiday in sunny destinations? What precautions should I take?
• Where can I get information and support for myself and my family?

PALLIATIVE CARE

• How long have I got?
• Will there be a lot of pain? How will the pain be controlled?
• Can I stay at home? Who will care for me?
• Which specialists am I likely to see?
• Is there a local respite unit for day care?
• Is there a hospice, or are there “hospice beds” in hospital? How are they accessed?
• How do I access advice from occupational therapy on coping with practical problems and on provision of equipment to help me cope at home?
• Where can I get advice about or obtain a loan or provision of a wheelchair?
• Where can I get advice or help with coping with symptoms like extreme tiredness or general weakness?

10.6 SOURCES OF FURTHER INFORMATION FOR PATIENTS

Please note that the information from some organisations will be particularly focussed on advanced stages of cancer and should be accessed with caution as the information may not be relevant and could be upsetting to some patients and their carers. This information is correct at the time of going to press.

10.6.1 NATIONAL ORGANISATION SPECIFIC TO CUTANEOUS MELANOMA/SKIN CANCER

Marcs Line Resources Centre
Dermatology Treatment Centre, Level 3, Salisbury District Hospital,
Salisbury, Wiltshire, SP2 8BJ
Tel: 01722 415071
Email: marcsline@wessexcancer.org

MARCS Line (Melanoma And Related Cancers of the Skin) is a national resource on matters pertaining to skin cancer.

10.6.2 NATIONAL ORGANISATIONS RELATED TO CANCER

CancerBACUP Scotland
Suite 2, 3rd Floor, Cranston House, 104-114 Argyle Street, Glasgow G2 8BH
Tel: 0141 223 7676, Fax: 0141 248 8422, FREEPHONE: 0808 800 1234 Mon-Fri 9-7
www.cancerbacup.org.uk

Offers a free cancer information service staffed by qualified and experienced cancer nurses, a growing number of CancerBACUP centres in hospitals up and down the country and a freephone information service on all types of cancer, staffed by specialist cancer nurses. Produces over 60 booklets and ‘CancerBACUP News’ three times a year.

Cancer Research UK
P.O. Box 123, Lincoln’s Inn Fields, London WC2A 3PX
Tel: 020 7009 8820, Fax: 020 7269 3100
www.cancerresearchuk.org/

A new charity that was formed in 2002 as a result of the merger between The Cancer Research Campaign and Imperial Cancer Research Fund.

Macmillan Cancer Relief Scotland
Osbourne House, 1-5 Osbourne Terrace, Edinburgh, EH12 5HG
Tel: 0131 346 5346, Fax: 0131 346 5347, Helpline:0808 808 2020 Mon-Fri 9-6
www.macmillan.org.uk

A UK charity supporting people with cancer and their families with specialist information, treatment and care.

Maggie’s Centres Scotland
The Stables, Western General Hospital, Edinburgh, EH4 2XU
Tel: 0131 537 3131, Fax: 0131 537 3130

Maggie’s Centre Glasgow
The Gatehouse, Dumbarton Road, Glasgow, G11 6PA
Tel: 0141 330 3311, Fax: 0141 330 3363
Email: maggies.centre@ed.ac.uk, www.maggiescentres.org

The goal of Maggie’s is to keep people who have cancer as healthy in mind and body as is possible, by enabling them to participate actively in the treatment of their disease. A Maggie’s Centre is also opening in Dundee.

Marie Curie Cancer Care Scotland
29 Albany Street, Edinburgh, EH1 3QN
Tel: 0131 456 3700
www.mariecurie.org.uk

Dedicated to the cure of people affected by cancer and the enhancement of their quality of life through its caring services, research and education.

Tak Tent Cancer Support Scotland
Flat 5, 30 Shelley Court, Gartnavel Complex, Glasgow, G12 0YN
Tel: 0141 211 0122, Fax: 0141 211 3988
Email: tak.tent@care4free.net, www.taktent.org.uk

Promotes the care of cancer patients, their families, friends and the staff involved professionally in cancer care by providing practical and emotional support, information, counselling and therapies as required. Network of local support groups throughout Scotland. The Youth Group, conTak, provides support for 16 to 25 year olds affected by cancer.

10.6.2 NATIONAL HEALTH EDUCATION AND SUPPORT AGENCIES

NHS Health Scotland (formerly known as the Health Education Board for Scotland or HEBS)
Woodburn House, Canaan Lane, Edinburgh, EH10 4SG
Tel: 0131 536 5500, Textphone: 0131 536 5503, Fax: 0131 536 5501
www.hebs.scot.nhs.uk

Scotland’s national agency for health education, promotion, advice and information.

10.6.3 OTHER USEFUL RESOURCES

The Skin Cancer Foundation
www.skincancer.org/melanoma

A North American website with some useful sections and resources.

10.7 Example patient information sheet

An example information sheet for patients who have had a level II or III melanoma <1 mm thick removed is given on the next page. Healthcare professionals may wish to adapt this for use in their own departments, remembering to insert the relevant local details.

INFORMATION FOR PATIENTS WHO HAVE HAD A PRIMARY
MELANOMA OF THE SKIN

You have recently had a small operation on your skin and examination of the sample under the microscope showed that the problem was a malignant melanoma, a type of skin cancer. You may have a lot of questions and worries, and the purpose of this leaflet is to help with some of them but not to be a substitute for a good conversation with your specialist. It is a good idea to:

• write down all the questions you would like answered and bring them to your next hospital visit
• bring another family member or close friend so that you can both discuss the information after your visit and be sure that you both have the same memory of what was said. This will help your family understand what has happened which makes it in turn easier for you to cope with a worrying situation.

HOW WILL I BE FOLLOWED UP?

Your melanoma was in the skin and has been removed by either one or two operations. After these the majority of people who have had melanomas of a similar thickness as yours remain well with no further problems, but because just over one in ten do develop signs of melanoma spread, we plan to see you back at the clinic for check ups every (insert local details). At these visits we will:

• look at and feel your scar
• check the lymph glands in your groin or armpit to be sure none are bigger than normal
• give you a total body skin examination to be sure that you do not have another small early treatable melanoma (once you have had one melanoma you are at increased risk of developing a second so we aim to identify and treat this as soon as possible).

Some people with melanoma have a very large number of moles. If you are in this group we may take photographs of some of these moles, and compare your skin with these photos at your clinic visits. Not everyone however needs these photographs.

If you have any worries between visits we will always see you early so do not hesitate to ‘phone (insert relevant phone number) and ask for your pigmented lesion clinic appointment to be brought forward.

WHY DID I GET A MELANOMA?

We also want to know the answer to this question so that we can try to prevent other people developing melanoma in the future. In about two thirds of people with melanoma too much sun exposure is important. This may be a childhood spent in a sunny country, or a history of many sunny summer holidays, particularly if you remember severe sunburn with blistering or peeling. People with melanoma are usually white skinned and have very pale skin which does not tan easily but goes red in the sun. They are often fair or red haired, have blue eyes and may have a lot of both moles and freckles. However, about one third of people with melanoma do not fit in to the group described above and may have inherited genes which makes them more likely to develop melanoma. Research in this area is ongoing.

ARE MY CHILDREN MORE LIKELY TO GET MELANOMA?

In Scotland, one melanoma patient in 50 has a history of melanoma in a close relative. If you are in this group your children could be at increased risk. In these families we offer regular skin examinations to all family members. If you do not have a close relative who has also had melanoma your children are not at greater risk, but most families that have had a person with melanoma become very careful and sensible about avoiding sun damage. If any of your family members have moles on their skin, which you would like us to check, please ask. We will be happy to help.

WHAT DO I DO NOW?

Most people with melanoma do not tolerate sunbathing well and sunburn could increase your risk of a second melanoma. We therefore suggest that you become very sensible over sun exposure. This does not mean never having a holiday in a sunny country but it does mean avoiding strong Mediterranean noonday sun. Comfortable cotton clothing is an excellent sunscreen so plan your holiday wardrobe around long cotton trousers or skirts, long- sleeved cotton tops and a hat.

Sunscreen creams, even those called total sunblock, have not yet been shown to protect against melanoma. They do prevent sunburn, so use them as part of your skin protection routine, but not in place of clothing. Remember that you can get sunburned in Scotland as well as on a Spanish beach so do follow the safe sun routine during good weather in this country as well as abroad.

FURTHER INFORMATION

Please ask us any other questions that are important to you. Women may want to ask about future pregnancies, use of the oral contraceptive or hormone replacement therapy. Advice is best tailored to you personally so do tell us your particular worries. Although there is a large amount of information on the Internet, much of it is aimed at the minority of patients whose melanoma has spread beyond their skin. It therefore does not apply to you, and you may find it unnecessarily alarming.

CONTACT TELEPHONE NUMBER (insert relevant number)

Please try to have your clinic card with you when you telephone as it carries your hospital number which will help us obtain your records as quickly as possible.