12. Cutaneous melanoma
In this series featuring information for patients and professionals taken from SIGN’s evidence-based guidelines, we reproduce the ‘notes for discussion with patients’ section from SIGN guideline number 72, on cutaneous melanoma.
The following 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 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?
‘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?
- 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?
- 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?
"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?
- 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?
An example information sheet for patients who have had a level II or III melanoma <1 mm thick removed is given below. Healthcare professionals may wish to adapt this for use in their own departments, remembering to insert the relevant local details.
|Example patient information sheet|
|Sources of further information for patients|
|The information from some organisations will be particularly focused on advanced stages of cancer and should be accessed with caution as it may not be relevant and could be upsetting to some patients and their carers.|
|National organisation specific to cutaneous melanoma/skin cancer|
MARCS Line Resources Centre
|National organisations related to cancer|
Cancer Research UK
Macmillan Cancer Relief
Marie Curie Cancer Care
|Other useful resources|
The Skin Cancer Foundation
Adapted from: SIGN 72. Cutaneous Melanoma – A national clinical guideline. Edinburgh: Scottish Intercollegiate Guidelines Network, July 2003.