Frequently asked questions about neuro-oncological research and clinical trials
The majority of melanomas occur without any family history of it.
It is very rare for there to be a strong family history. This is when three or more first degree relatives (parent, brother/sister or offspring) are affected and then it can be linked with one specific 'gene'. A gene is a part of each one of your body's cells. It contains all the 'information' about your body, like a set of instructions.
If you have had three or more primary melanomas, or have had three or more first degree relatives affected by melanoma you will be referred to the genetics clinic at St. Mary's Hospital, Manchester.
However, melanoma can occur in families but not be related to a single faulty gene. It is perhaps more likely to be several unusual genes which you inherit. But they may not always result in melanoma. This is the same for other cancers such as lung cancer and colorectal cancers.
So, most cases of melanoma are occasional. The number of people with inherited risk is unknown, but thought to be very low. Only about 1 - 2% of people (one or two out of 100) with melanoma have more than one close relative with it.
We recommend safe sun exposure to make sure you do not tan or burn. This way you can lower the risk of a second new melanoma rather than a recurrence of the previously removed melanoma. As you have had a melanoma you do have the type of skin that could produce another.
Some melanomas are related to sun exposure, especially tanning or burning. The risk does change with skin type.
Go to Cancer Research UK's SunSmart Campaign via Useful links
If the melanoma is found early, surgical removal can cure the disease in most cases (80%). In the case of metastatic disease (when the melanoma has spread to other parts of the body) melanoma cannot be cured. However with the current treatments the disease can be controlled and in some cases managed for a reasonably longer period of time.
Not all melanomas can be prevented but some of them can (by noticing unusual moles, limiting UV exposure, etc).
Go to 'Reduce the Risk' via Useful links
See answer to the next question below.
It is usual for patients to feel many different emotions after a diagnosis of cancer, even if your melanoma has been removed and prognosis is good.
There are many ways to get help.
The Psycho-Oncology department provide counselling and a range of ways to help you.
Tel: 0161 446 3681
They have a group for patients called: What now? Life after treatment. It is aimed at patients who have completed treatment in the past six months. For more details and self-referrals:
Tel: 0161 446 3682/ 3688
A Complementary Therapy Service is also available here, offering massage, reflexology, acupuncture and other services to support you and your carers.
Tel 0161 446 8236/ 3524
Your local hospice usually offers many of these services as well. Ask your health care professional in the clinic about your nearest hospice.
Clinical trials are the only way that we can make advances in the treatment of melanoma. There are advantages and disadvantages to all clinical trials. We try our best to explain these when we talk to you. We also give you written information that has been approved by an independent research ethics committee.
Trials increase the treatment options available for patients and improve our understanding of how best to manage melanoma. We fully understand that not every patient wants to be in a trial. In fact we learn valuable lessons from hearing the reasons why patients do not want to be involved.
Your safety and welfare are always our main concern and guide our decision making, whether you are in a trial or not.
Melanoma is 'staged' as one, two, three or four. You may see this written down as I, II, III or IV. The number depends on how far the melanoma cells have spread. Stage I (one) means the cancer cells are present at the first site of the melanoma. Stage IV (four) means the cancer cells have spread to other parts of the body. Stage IV disease is more serious than Stage I.
If the melanoma comes back in your skin or superficial glands (near to the skin surface) it can be noticed with self examination or routine examination in clinic. If it comes back to the large internal organs an early diagnosis can be more difficult. This is because in most cases of early metastatic disease (when the melanoma has spread to other parts of the body) you may not have any symptoms. But it can be identified with an 'imaging' procedure such as a CT or ultrasound scan and blood tests.
Not all patients with melanoma need a scan. It depends on the 'stage' of your melanoma and other symptoms you might have.
The Doctor or Nurse Clinician will ask you about your general health. They will then examine the area around the original melanoma scar for any signs of melanoma recurrence. The lymph nodes will also be examined to see if any are enlarged or swollen. If any changes are felt or seen you may have some further investigations such as scans and blood tests. These are often just precautionary and shouldn't cause you any initial concern.
Re-excision of your melanoma scar is necessary to try to prevent melanoma returning to that area.
In between your follow up appointments, every four weeks you can examine yourself (certainly not more often than every fortnight). Ask the Doctor, Nurse Clinician or Nurse Specialist to show you how to do this.
Self-examination involves feeling and looking. Begin around your original melanoma scar, you are looking for any new pigmented lesions (areas of skin that are a different colour to your normal skin) and feeling for any new lumps.
Also examine your lymph nodes. It may be easier for you to do this in the bath or shower using your soapy hand. You are feeling for any new lumps or swellings. Remember that your lymph nodes can be swollen for other reasons too such as infection, or a cut on your skin. However if you find a new lump or swelling please contact your key worker/ Nurse Specialist. They will advise you what to do next.
The Christie has a Benefits and Advice team in the Cancer Information Centre. They can offer assistance on:
Tel: 0161 446 8538/ 8539
Some organisations are just for carers - they offer both emotional support and practical help. The services vary depending on where you live but if you contact the Cancer Information Centre they will be able to advise you.
Tel 0161 446 8100
Our Psycho-Oncology department also offer help to family and carers. Ask a member of the clinical team if you need a referral.
Tel 0161 446 3681
Your health care professional can discuss with you whether it is safe to travel. This depends on the treatment you are receiving and whether it is a good idea to alter it.
If you are going abroad, sometimes it is difficult to get Travel Insurance. The Macmillan website details companies who are more willing to offer insurance.
Go to Useful links
Tel: 0808 808 00 00
Usually there are more treatment options available through clinical trials in the NHS. Often patients with private healthcare insurance will be treated on the NHS for this reason. At The Christie we almost certainly have the biggest trial portfolio of any hospital in the UK. This includes groundbreaking immunotherapy treatments - we are only one of three centres in Europe to offer this.
However there are sometimes trials available in other hospitals that we are not involved with, we would always tell you about this if we felt this was relevant to you.
New drugs are often licensed in the USA six to 12 months before they are licensed in Europe. Also, new drugs may not be immediately approved in the UK, so there can sometimes be a difference between what is available in the USA, in Europe and in Manchester.
When you see your health care professional make sure you discuss your concerns with them. There is some very good information available on the internet; however there is also some misleading and confusing information.
Useful links has some recommended websites.