Glossary

A

Adjuvant therapy

A treatment used after a successful primary treatment (e.g. surgery) to reduce the chance of melanoma coming back. Even if the primary treatment has removed all visible melanoma, adjuvant therapy can remove tiny bits of melanoma cells that can sometimes stay in the body. Examples of adjuvant therapy are chemotherapy, immunotherapy, targeted therapy, or radiation therapy.

Advanced Melanoma

Melanoma that has spread from its original location to other parts of the body, also called metastatic melanoma.

Adverse effect

A symptom or negative change to the health of a patient during a clinical trial.

Antigen

A foreign substance that causes the immune system in the body to produce a response, for example, a rash may appear on the skin.

Atypical moles

(Also known as dysplastic naevus syndrome) Moles that look unusual. Doctors can tell that they are unusual by using a microscope. An atypical mole can be anywhere on the body. Atypical moles are not cancerous, but people with atypical moles are at increased risk for melanoma.

Autologous

A process in which blood or tissue is taken from the patient, who then receives it back as part of a treatment.

B

Basket study

A type of clinical trial that tests how well a new treatment works in patients who have different types of cancer. The cancerous tumours will all have something in common, for example, a specific gene mutation. The trial will test a drug that targets that mutation.

Bias

A strong feeling for or against an idea. Researchers will actively try to reduce bias in a clinical trial, because it can affect the results.

Biopsy

A process to take a sample of melanoma tissue so that it can be looked at in the laboratory to better diagnose the type and stage of melanoma.

Blinded

In a blinded trial, patients do not know if they are receiving the active treatment or the placebo. This is to make the trial fair.

Blister

A small bubble on the skin, which is a collection of fluid underneath the top layer of skin.

BRAF inhibitor

A type of targeted treatment for melanoma that has a BRAF positive mutation. Examples of drugs that are BRAF inhibitors are encorafenib, dabrafenib, vemurafenib.

BRAF negative mutation

BRAF is a faulty gene in the melanoma cells that can cause them to grow and divide too fast. Doctors can test for this gene. If changes are not detected, the melanoma will be called ‘BRAF negative’.

BRAF positive melanoma

BRAF is a faulty gene in the melanoma cells that can cause them to grow and divide too fast. Doctors can test for this gene. If changes are detected, the melanoma will be called ‘BRAF positive’. There may be some specific treatments that can be used to target these faulty genes and treat the melanoma.

BRAF positive mutation

BRAF is a faulty gene in the melanoma cells that can cause them to grow and divide too fast. Doctors can test for this gene. If changes are detected, the melanoma will be called ‘BRAF positive’. There may be some specific treatments that can be used to target these faulty genes and treat the melanoma.

C

Checkpoint inhibitors

A type of immunotherapy named for its specific action within the immune system. Some melanoma cells can have ‘checkpoint’ proteins on their surface which allow them to hide from the body’s immune system. This stops them from being killed and allows them to divide and grow. Checkpoint inhibitors block the checkpoint proteins on the melanoma cells. Then the body’s immune system can recognise, attack, and kill the melanoma cells. Examples of checkpoint inhibitors are pembrolizumab, nivolumab and ipilimumab.

Chemotherapy

Chemicals/drugs used to try to treat melanoma. Chemotherapy is designed to kill fast-growing cells in the body. Melanoma cells are known to grow and multiply much more quickly than most cells in the body, therefore chemotherapy can be used to try to treat melanoma. Even though chemotherapy is an effective way to treat many types of cancer, treatment also carries a risk of side effects. This is because chemotherapy doesn’t target the melanoma cells specifically. Chemotherapy can affect other fast-growing cells in the body, for example, hair follicles, cells in the digestive system, and cells of the immune system

Circulating tumour DNA

Found in the blood if there are cancer cells in the body (it detects the DNA (the building blocks) of cancer cells).

Clinical review

A doctor’s assessment of how well a patient is.

Clinical trial

A study involving a certain group of patients to test a new treatment or procedure

Cohort

A defined group of patients that are included in a clinical trial

Combination therapy

Two or more drugs given together to treat melanoma. Also known as combination treatment

Combination Treatment

Two or more drugs given together to treat melanoma. Also known as combination therapy

Consent

A patient’s written agreement to take part in a clinical trial

Control group

A group of patients in a trial who receive the current standard treatment or a placebo (no treatment). The control group is compared with the group receiving the new treatment to see which is more effective

CT scan

A computerised tomography (CT) scan uses x-rays and a computer to make detailed images of the inside of the body. CT is a painless, non-invasive way for doctors to be able to diagnose or monitor melanoma, or guide tests and treatments

CTLA-4 inhibitor

CTLA-4 is a protein that appears on some cells in the immune system. Research shows that if CTLA-4 is blocked, the body’s immune system can recognise and fight melanoma more effectively. An example of a CTLA-4 inhibitor is ipilimumab.

Cutaneous melanoma

Melanoma that starts in the skin

D

Dermatologist

A doctor who specialises in treating skin conditions

Disease progression

When the melanoma grows or spreads to other parts of the body, or if it returns after it has gone away.

DNA

The building blocks of all cells in the human body.

Double-blinded

In a double-blinded trial, neither the patients nor the research team know who is receiving the active treatment or the placebo. This is to make the trial fair.

E

Eligibility criteria

The requirements that patients need to meet to enter a clinical trial. The criteria can include patients in the trial or exclude them from it.

Excision

A type of surgery to remove the melanoma from the skin.

Experimental

A new treatment or procedure that is still being tested

F

Faulty gene

A faulty gene in melanoma cells can cause them to grow and divide too fast. The faulty gene helps the melanoma to grow in the body.

First line treatment

The first treatment received by a patient for their stage of melanoma.

Follow-up

Regular appointments to review patients with melanoma. This can be before, during or after treatment.

G

Gene

A gene is made up of DNA (the building blocks of every cell in the body). A gene can decide how a cell or group of cells act, or what feature it gives to a person, for example, eye colour.

Gene mutation

A faulty gene in melanoma cells that can cause them to grow and divide too fast. Doctors can test for specific gene mutation. If changes are detected some specific treatments can be used to target these faulty genes and treat the melanoma.

Granulocyte, macrophage-colony stimulating factor (GM-CSF)

A natural protein in the body which helps to make white blood cells. White bloods cells are part of the immune system, and they can recognise and fight infections.

H

Healthy Volunteer

A person who takes part in a clinical trial and who generally has no known health problems. Healthy volunteers are used in some trials as a control group, to help the researchers define what is ‘normal’.

HLA-A*0201 positive mutation

HLA-A*0201 is a gene in the melanoma cells that can cause them to grow and divide too fast. Doctors can test for this gene. If changes are detected the melanoma will be called ‘HLA-A*0201 positive’. There may be some specific treatments that can target these faulty genes and treat the melanoma.

I

Immune system

The body’s natural defence system. The immune system is made up of cells that work together to recognise, attack, and kill anything that is foreign to the body, for example bacteria and viruses, or cancer cells.

Immunotherapy

Treatment introduced into the body to help the body's immune system fight melanoma more effectively. Melanoma cells can sometimes hide from the immune system so that they can’t be detected and killed. Immunotherapy treatment aims to help the immune system recognise, attack and kill melanoma cells.

Induction therapy

A type of therapy that can be given to ‘kick start’ the treatment process. Induction therapy is usually followed by a longer period of maintenance treatment. Induction therapy is often more intense treatment, for example higher doses of a drug over a shorter time period, or a combination of drugs that work effectively to kill the melanoma.

Intervention

Any treatment or procedure that is used to treat or prevent melanoma in a clinical trial

Intra-tumoral

An injection given directly into the melanoma (tumour) site.

Intravenous

Into a vein, e.g. in the arm

Invasive melanoma

Melanoma that has spread beneath the top layer into the next layer of skin.

L

Local anaesthetic

A drug that is applied to the skin, to make it numb, so that pain cannot be felt in that area.

Lymph nodes

Lymph nodes are small groups of cells that work as filters for anything foreign in the body, for example, melanoma cells. Lymph nodes contain immune cells that try to fight the melanoma cells that are carried in through the lymph fluid system. Lymph nodes are located in many parts of the body, including the neck, armpit, chest, belly, and groin.

M

Maintenance therapy

A type of therapy that is given to maintain the effect after initial drug treatment has killed or reduced the size of the melanoma. For example, a higher dose induction treatment will be given first to kill the melanoma, and then a longer period of maintenance treatment will be given to stop the melanoma from coming back.

MEK inhibitor

A targeted treatment that blocks proteins called MEK1 and MEK2. Blocking these proteins can stop melanoma cells from growing and kill them Examples of MEK inhibitors are trametinib, binimetinib.

Melanoma in situ

Also known as stage 0 melanoma. It means that there are melanoma cells in the top layer of skin, but they have stayed in the area in which they started to grow. They have not grown into deeper layers of the skin.

Metastases

Melanoma cells that have spread from their original location to other parts of the body

Metastatic

Melanoma that has spread from its original location to other parts of the body, also called advanced melanoma

Metastatic melanoma

Melanoma that has spread from its original location to other parts of the body, also called advanced melanoma

Monotherapy

A treatment that is given by itself, not in combination with any other treatment.

Mucosal melanoma

Melanoma that starts in the mucous membranes. This is the moist layer of tissue that covers the inside surface of parts of the body such as the mouth, nose or vagina.

Mucous membrane

The moist layer of tissue that covers the inside surface of parts of the body such as the mouth, nose or vagina.

Multi-centre

A clinical trial that is carried out at more than one clinic or hospital.

N

Neoadjuvant treatment

Treatment given before the first, or primary treatment (e.g., surgery). It can be used to make the primary treatment easier or more effective. For example, giving drug treatment to shrink the melanoma tumour first, so that it can then be physically removed much more easily by surgery.

Non-invasive

A treatment, intervention or procedure that does not go inside the body and there is no break in the skin.

NRAS negative mutation

NRAS is a faulty gene in the melanoma cells that can cause them to grow and divide too fast. Doctors can test for this gene. If changes are not detected, then the melanoma will be called ‘NRAS negative’.

NRAS positive mutation

NRAS is a faulty gene in the melanoma cells that can cause them to grow and divide too fast. Doctors can test for this gene. If changes are detected the melanoma will be called ‘NRAS positive’. There may be some specific treatments that can target these faulty genes and treat the melanoma.

NTRK positive mutation

A faulty gene in the melanoma cells that can cause them to grow and divide too fast. Doctors can test for this gene. If changes are detected the melanoma will be called ‘NTRK positive’. There may be some specific treatments that can target these faulty genes and treat the melanoma.

O

Observational study

A type of clinical trial where the research team monitors patients in their current situation. The treatment plan doesn’t change, and the patients are not split into different groups. The research team may do extra monitoring to observe a certain characteristic of this group of melanoma patients. They can do this by taking some extra blood tests, performing extra scans, or asking patients some questions about their health or melanoma treatment.

Ocular tumour

A tumour of the eye.

Open label trial

A type of clinical trial where the patient on the trial, and their doctors, know which treatment they are having.

P

Parallel arm trial

A clinical trial where patients receive different treatments in different groups. Each patient is allocated to a group that receives a defined treatment.

Participant

A patient who has volunteered to be part of a clinical trial.

Pathologist

A doctor who specialises in looking at samples taken from the body and using them to diagnose diseases. The sample could be fluid, blood, or tissue. The cells are looked at in a laboratory and the results are given to the doctors who are treating the patient.

PD-1 inhibitor

PD-1 is a protein found on the surface of some melanoma cells. It can allow the melanoma cells to hide from the body’s immune system so that they can grow. PD-1 inhibitors can block this protein so that the immune system can recognise, attack, and kill the melanoma cells. Examples of PD-1 inhibitors are nivolumab, pembrolizumab

PD-1/PD-L1 protein

A protein on the surface of some cells in the body that can stop the immune system from finding, attacking and killing melanoma cells.

Phase

A stage of a clinical trial. Clinical trials have a long development process. They usually pass-through different stages, called phases. Early phase trials test the safety of treatments and later phase trials compare new treatment to standard treatment.

Phase 1

A clinical trial that tests a new treatment or intervention for the first time. A phase 1 clinical trial is usually small and normally involves up to 30 patients. The main aims of phase 1 trials are to test the safety of the medicine, to identify side effects, and to determine a safe dose of the medicine.

Phase 1/2

A clinical trial that moves from phase 1 to phase 2 using the same protocol In the phase 2 part of the clinical trial, patients usually receive the highest dose of treatment that did not cause harmful side effects in the phase 1. By combining two phases research questions to be answered more quickly or with fewer patients.

Phase 2

A clinical trial that tests the effectiveness of the trial treatment/intervention and continues to look at its safety. Phase 2 trials usually involve larger groups of patients than phase 1 trials.

Phase 3

A clinical trial that compares the new treatment/intervention to standard treatment or placebo. Phase 3 trials can involve hundreds of patients.

Phase 4

A clinical trial that happens after the new treatment/intervention has been licensed for standard use. Phase 4 trials look at risks, benefits, side effects, and the best way to use the treatment in the long term.

Placebo

A ‘dummy’ drug in a clinical trial that looks the same as the trial treatment and is given in the same way. A placebo does not have any active ingredients, so, it does not affect the melanoma. Researchers monitor and assess patients receiving placebo in exactly the same way as patients who receive the new trial treatment. Then researchers compare these two groups. This is to make sure that the results of the trial will be fair

Primary surgery

When an operation is the first treatment after melanoma diagnosis. Surgeons physically remove the melanoma by cutting it out.

Primary treatment

The first treatment a patient receives to treat their melanoma

Primary tumour

The first melanoma that is found on a patient’s body.

Principal Investigator

A doctor who is responsible for the running of a clinical trial. Each hospital has its own Principal Investigator.

Progressive disease

Melanoma that is growing or spreading in the body.

Protocol

The written plan of a clinical trial. It includes information about the aims of the trial, its design, eligibility criteria, the schedule of tests, the treatment or intervention, duration, possible side effects etc.

R

Radiation therapy

High doses of radiation used to shrink tumours or kill cancer cells. When used to treat melanoma, the radiation beams come from a machine and are aimed directly at the melanoma. Also called radiotherapy

Radioactive substance

A substance made up of particles that give off energy. Doctors can use this in combination with an external scan to diagnose certain conditions or look at groups of cells inside the body. When small amounts of a radioactive substance are attached to other particles, they can be injected into the body and will be absorbed by certain cells. An external scan can be used to detect the energy that the radioactive substance gives off. The energy will glow a different colour when looked at through the scan machine and so photos of the groups of cells inside the body can be made.

Radiotherapy

High doses of radiation used to shrink tumours or kill cancer cells. When used to treat melanoma, the radiation beams come from a machine and are aimed directly at the melanoma. Also called radiation therapy

Randomisation

When a computer randomly selects patients into different treatment groups for a clinical trial. Each patient on the trial has the same chance of getting the treatments that are being compared and tested. This makes sure that the trial is fair.

Randomised controlled trial

A clinical trial in which patients are randomly assigned to a control group or an intervention group (receiving the new treatment). There are at least two different groups being compared in the trial.

Recruitment

The act of patients joining a clinical trial

Recurring

The melanoma has reappeared after a period of not being detected.

Relapse

The melanoma has reappeared after a period of not being detected.

Resected

The whole melanoma has been removed by surgery

Resection

The removal of the whole melanoma by surgery

S

Second line treatment

The second treatment received by the patient to treat the same stage of melanoma

Sentinel lymph node

The first lymph node or nodes that may have drained the melanoma cells. These are the most likely lymph nodes to contain some melanoma cells/metastases.

Sentinel Lymph Node Biopsy (SLNB)

A procedure to remove a small part of the sentinel lymph nodes to check if they contain any melanoma cells. An SLNB is usually performed at the same time as the primary surgery.

Side effect

A new symptom or problem that is caused by a treatment. In a clinical trial, this can also be called an adverse event.

Single agent

A drug that is given by itself, not in combination with any other treatment.

Skin self-examination (SSE)

An inspection of the skin that is done by the patients themselves, not by a doctor or a nurse. It is a way to notice any changes or unusual areas of the skin.

Solid tumour

A tumour that is found in an organ or any tissue of the body.

Stage 1 (I)

Stage 1 melanoma is the thinnest form of the disease. The melanoma is contained in the top layers of the skin, with no spread to other parts of the body including the lymph nodes. Stage 1 melanoma can be further divided into stage 1A and stage 1B. For more information see ‘What are the different stages of melanoma’

Stage 2 (II)

Stage 2 melanoma is only in the skin. There is no sign that it has spread to lymph nodes or other parts of the body. Stage 2 melanoma is divided into stage 2A, stage 2B and stage 2C. For more information see ‘What are the different stages of melanoma’

Stage 3 (III)

Stage 3 melanoma means that cancer cells have spread into skin, lymph vessels, or lymph glands close to the melanoma. The melanoma has not spread further to distant sites within the body. Stage 3 melanoma is divided into stage 3A, stage 3B, stage 3C and stage 3D. For more information see ‘What are the different stages of melanoma’

Stage 4 (IV)

Stage 4 melanoma means that the melanoma cells have spread from the original location to another part of the body, such as the lungs, liver, bones, brain, or distant lymph nodes. This is also called metastatic melanoma. Some people are diagnosed with stage 4 melanoma straight away. Others are diagnosed with stage 4 melanoma after an early-stage diagnosis. Their disease has returned and spread. For more information see ‘What are the different stages of melanoma’

Standard of care

The care that is given to a patient based on approved evidence for the best way to treat melanoma.

Standard treatment

An approved, effective, and widely used treatment for a disease, in this case melanoma.

Subcutaneous

Underneath the layers of the skin

Supportive care

Support and services to improve the quality of life of patients with melanoma. The goal of supportive care is to meet the patient’s physical (e.g. treating symptoms), informational, emotional, psychological, social, spiritual, and practical needs. Supportive care does not mean the direct treatment of the melanoma itself.

Surgery

An operation to physically remove the melanoma by cutting it out.

Symptom

A change in your body that shows you are not well. Symptoms can be clues to diagnose a condition or disease.

T

Targeted therapy

A type of drug that targets melanoma with a specific gene mutation. Targeted treatments can shrink or slow the growth of melanoma cells with that mutation

Targeted treatment

A type of drug that targets melanoma with a specific gene mutation. Targeted treatments can shrink or slow the growth of melanoma cells with that mutation

TERT promotor mutation

A telomerase reverse transcriptase (TERT) promoter mutation is a gene mutation that can be found in melanoma cells. Some new clinical trial treatments can target and try to kill the melanoma that has this mutation.

Therapeutic cancer vaccine

A vaccine that is used to treat cancer, rather than to prevent a disease. Therapeutic cancer vaccines help the immune system to recognise specific proteins, called antigens, that are on the surface of melanoma cells. Then the immune system can attack and kill the melanoma cells that have these antigens. A therapeutic cancer vaccine is another type of immunotherapy treatment.

TIL (Tumour-Infiltrating Lymphocyte) therapy

A personalised treatment that helps the body’s immune system to fight melanoma more effectively. Specific cells (TILs) are taken from the melanoma, engineered in a laboratory, and then reintroduced into the body to identify, attack, and kill the melanoma cells.

Tissue

A group of cells in the body that are connected to each other and work in a similar way. Tissue makes up organs and other solid parts of the body, such as muscles, nerves and the skin. Tissue cannot be used to describe fluids in the body, for example, blood.

Toxicity

How poisonous or harmful a treatment can be to the body. Toxicity can lead to adverse effects.

Treatment line

The number of different treatments that a patient has received to treat their stage of melanoma.

TRK inhibitor

A type of treatment to target melanoma that has an NTRK positive mutation.

U

Ulcerated

Broken down skin that is on top of the melanoma.

Unknown primary melanoma

Doctors do not know where the melanoma originally came from, but they have found it in other places in the body, as metastases.

Unresectable

Melanoma that cannot be removed fully by surgery

Untreated melanoma

No treatment has been used to treat the melanoma yet.

Uveal melanoma

Melanoma that starts in the eye. The uvea is the middle layer of the eye.

W

White bloods cells

Part of the immune system, the body’s natural defence. White blood cells can recognise and fight infections.

Wide local excision

A type of surgery. During the operation, surgeons take an extra ‘safety margin’ of skin surrounding the original melanoma site. They do this to remove any small amounts of remaining melanoma cells that may have been left behind after the first biopsy/surgery.