Waiting for a diagnosis

Patient Guide

If you have a mole that’s changed, or an abnormal area of skin, and been to see your GP, you may be referred to a specialist centre. We’ve put together some frequently asked questions (FAQs) and information and useful tips to help you know what to expect below.

 

If you are concerned you may have a melanoma you should contact your GP. It may be in the first instance you will be offered a telephone consultation. If you can, it is worth taking a photograph of the mole or area with a smartphone. Click here to find out how to take a good image.

If you see your GP with a mole that’s changed or an abnormal area of skin they will assess if there have been particular changes like size, shape, colour or signs of irritation (oozing or bleeding).

If they think you need a referral or suspect melanoma they will:

Refer you to a specialist clinic

Or

They may take a photograph of the affected skin and send it to a teledermatology clinic. Here a skin specialist doctor (dermatologist) looks at the digital picture and will decide if you need a referral to be seen in person. A referral at this stage does NOT mean you have melanoma.

 

If they dont think you need a referral they might:

Ask you to come back in a couple of weeks or months so they can monitor your mole or abnormal area of skin. If you notice any further changes make an appointment with your GP straight away. Changes to look out for include size, shape, colour and any irritation or bleeding.

Q: If I need a referral, what happens next?

A:  If you need a referral, you may be referred for what is known as a ‘two week wait’ (2WW) for an urgent review. This is the amount of time that should pass before you get seen in a specialist centre.

Q:  Where will I be referred?

A:  You will be referred to a specialist. On your first appointment, before melanoma has been diagnosed, you will most likely see a dermatologist and may speak to a skin cancer nurse specialist (CNS).

Q:  Why will I need a full skin examination?

A: This usually happens on your referral appointment. Upon referral you will normally have a full skin examination by a member of the medical team. Here, all of your skin is examined from the top of your scalp to the soles of your feet to look for any changes or unusual looking areas. They use a magnifying instrument called a dermatoscope. Clinical photographs may be offered to help with future follow-up. Sometimes, they may also examine your lymph nodes to check for swelling.

It is necessary for the medical team to examine any changes or unusual looking areas on your skin, as well as the original area you were referred for.

Q: What other tests/investigations may happen when I am referred?

A:  Any lesions that look suspicious will be removed by minor surgery by what is known as a ‘local excision’. This is a relatively small procedure and a local anaesthetic is given. This tissue or ‘skin biopsy’ is sent to be examined under a microscope by a pathologist. They look at the cells and tissue in detail (histology).

Useful to know…

  • When you have your full skin examination you will be asked to remove your clothing so all of your skin can be examined so dress in loose fitting clothing.
  • You should be given an idea of how long the test results will take to come back. If not, you can ask the doctor. They can take up to four weeks in some cases. It can be frustrating to wait, but processing and preparing the sample takes time. There may also be more than one pathologist that needs to look at it.
  • When you attend this appointment consider wearing loose fitting clothing which you can remove easily in order to make the examination easier. They may ask that you be fully undressed and in a hospital gown.
  • There are NO blood tests to diagnose melanoma.
If no melanoma cells are seen, you will be discharged, however, continue to be vigilant and monitor your skin regularly.  Please see here for more information on how to check your skin.

Q: What does it mean if I have been told I have melanoma in-situ or lentigo maligna?

A: This is not a cancer. You don’t have an invasive melanoma. This type of disease is considered a pre-cancer that is sitting on the surface of the skin. This guide has been designed specifically for patients with invasive melanoma. For more information on melanoma in-situ, see here.

Q:  What can I expect next if I am diagnosed with melanoma?

A:  When you receive the diagnosis of melanoma, you may experience a number of emotions. These can include shock, fear, uncertainty, anxiety and anger. You may also have many questions that need answering.

It is likely that at the time of diagnosis you will also be introduced to a specialist skin cancer nurse. This is a nurse who is able to provide advice and information related to skin cancer. The specialist nurse is there to answer any questions you may have. Please share any of your concerns with them as they will help you through what can be a difficult time. If you do not meet the nurse specialist, we would encourage you to ask your consultant for their contact details. You should also be able to contact them by calling the hospital switchboard number and asking for the dermatology or skin cancer nurse specialist. They may not be able to take your call straight away and many teams will have an email system or answering machine where you can leave your details.

Our Melanoma Helpline nurses are also available to answer your questions, big or small, about any part of your diagnosis or treatment.

0808 801 0777

 

You may also meet a member of the medical team to discuss what is known about your melanoma with you at this point. For more information on who may be involved in your care see here.

This may include information on:

  • Breslow thickness – this describes the depth of your melanoma and is usually measured in millimetres
  • Whether the melanoma has been removed with the initial biopsy
  • If your melanoma is ulcerated as this can affect your chances of further problems

Your doctor will be happy to discuss these features with you so feel free to ask during the consultation.

You may be offered further tests or investigations that apply to you as an individual. You may not undergo all of these but your team will decide what is needed in your particular case. Tests for MRSA and Covid may also given to individuals entering a hospital setting.

 

Q:  Why is BRAF tested?

A:  Approximately half of melanomas have developed a mutation in a gene known as ‘BRAF.’ This means your melanoma contains a faulty BRAF protein. A test can be carried out on your melanoma to determine if has a faulty BRAF also known as being BRAF-mutant or BRAF-Positive. This may affect your treatment choices in the future. If your melanoma does not have the BRAF mutation, this is called being BRAF-negative or BRAF-wildtype. BRAF mutations do not run in families, they are not hereditary and therefore it is not something you pass on to your children. For more information on BRAF and potential treatments see here.

 

Q:  Will I need scans?

A:  Depending on the type and stage of your melanoma, your doctor may require that you have imaging scans. This is to see if your cancer has spread to lymph nodes or other organs. Note that the majority of people don’t require imaging or a scan. It is more common in later stages of melanoma (Stage 3 or 4), or if you have been diagnosed with a rare type of melanoma. Here are possible types of scans you may undergo:

Ultrasound – This type of scan uses a hand-held probe that uses high frequency sound waves and computer analysis to look at organs inside your body.

CT scan (Computerised Tomography) – This type of scan combines an X-ray and computer analysis to build a detailed image inside your body. It is sometimes also referred to as a CAT scan. You usually have to lie on a flat bed that passes through a large circular ring.

MRI scan (Magnetic Resonance Imaging) – This type of scan uses magnetic fields to build a detailed image of your body. An MRI scanner is a large tube that contains powerful magnets. You lie inside the tube during the scan and need to keep as still as possible.  Any metal containing device such as a pacemaker may prevent you from having an MRI and an alternative scan would be recommended.

PET scan (Positron Emission Tomography) – This type of scan involves using a radiotracer that is injected into the arm which can be detected in a scanner. This scan is often combined with CT scans to produce even more detailed images. This is known as a PET-CT scan.

Useful to know….

  • You will also need to remove any jewellery or anything metal
  • After a scan is performed it is sent to a doctor who specialises in scans and x-rays, called a radiologist. It may take some time for them to interpret the results and send them to your consultant
  • Note that before a scan you may be asked to remove clothing and dress in a gown

Q:Why may my tests take some time to come back?

A:  It can be very hard and worrying time waiting for test results and your medical team understand this. Average wait times can be 2, 3 or 4 weeks depending on the test. It is a good idea to ask how long your results will take. For skin biopsies it takes time to process a skin sample. You can contact your clinical nurse specialist if you have any concerns.

Q: What is a SSMDT, or MDT meeting and who attends it?

A: SSMDT stands for Specialist Skin Cancer Multidisciplinary team and MDT for multi-disciplinary team (MDT). This is a team of expert health care professionals from different specialties who work together to decide the best plan of care for you.

Q:  Is melanoma hereditary?

A:  Most melanoma cancers do not run in families and are not hereditary (inherited through genes). Since families may inherit the same skin type though, they may have more risk of melanoma for this reason.

Q:  What does melanoma ‘stage’ mean?

A:  After a diagnosis of melanoma, your medical team will work out the ‘stage’ of your melanoma.  The stage is a way of describing the key features of your melanoma and provides an indication of how advanced your melanoma is.  For more information on staging, how your stage is worked out and the different stages of melanoma, see here 

Q: What guidelines do doctors use to treat melanoma?

A:  Doctors diagnosing and treating melanoma follow pathways, that can be different in different parts of the UK. They are also helpful for patients and carers and can be found via these links:

England and Wales:

NICE guidelines for melanoma are the pathways of care doctors diagnosing and treating you follow. They can be found via this link: https://www.nice.org.uk/guidance/ng14

National Institute of Health and Care Excellence pathways

Scotland:

Scottish Intercollegiate Guidelines Network (SIGN) pathways

Northern Ireland:

Many of the melanoma NICE melanoma pathways are endorsed by Northern Ireland. However, some are different. View here.