Melanoma Glossary

Our Melanoma Glossary will help you understand the language that you may hear or read about. If you don’t have a medical background, it can be quite overwhelming hearing all of the medical jargon. This glossary covers a wide range of terms from diagnosis, treatment, surgery, scans, clinical trials and more and aims to support you and your family and friends with their understanding of what you are going through. We have a separate section of our website explaining the different people who may be involved in your care which you can find here. 

A

Acral Melanoma

A rare type of skin (cutaneous) melanoma that can form on the palms of the hand, soles of the feet, or under finger or toe nails. Sometimes called acral lentiginous melanoma.

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.

Alopecia

The loss of hair from the head or body

Anaemia

When there are a low number of red blood cells in the body. On a blood test, anaemia shows as a low haemoglobin. Haemoglobin is the main protein in the red blood cells that carries oxygen around the body

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.

Arthritis

Swelling, pain, or stiffness in the joints of the body, for example, in the knees, wrists, fingers

Asymmetry

One half of the mole or skin growth doesn’t match the other half.

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.

Benign tumour

An abnormal collection of cells that is not cancerous. A benign tumour can develop anywhere in the body

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

A gene in the body that makes a protein that is involved in sending signals in cells and in cell growth. Mutated (changed) forms of the BRAF gene can be found in melanoma cells, which can cause them to grow and divide more quickly.

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.

Brand name medicine

A brand name is given by a pharmaceutical company when a medicine first gets approved. The medicine will also have a generic name which is the drug name or the name given to the chemical active ingredient of the medicine. After about 10 years, other pharmaceutical companies are allowed to produce the same medicine and they will all have the same generic name (the drug ingredient) and all act in the same way to treat melanoma. For example, nivolumab is the generic name and Opdivo is the brand name.

Breslow scale /thickness

The depth a melanoma grows below the skin surface. Measured in millimetres.

C

CDKN2A

This gene typically stops cancer cells from growing. When it is not working properly (mutates), melanoma cells can grow uncontrollably. Families with a history of melanoma may carry this gene mutation.

Cell

The individual unit that makes up all of the tissues of the body

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

Colitis

Swelling or inflammation of the large intestine (the colon)

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

Constipation

Passing poo is difficult or happens less often than normal

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

Cryotherapy

This treatment is a freezing-cold liquid nitrogen that a dermatologist sprays on pre-cancers of the skin (and some early cancers) to help clear them. It takes seconds, stings during the treatment, and turns the skin red for a few days afterward. It can blister and may leave behind a spot.

CT scan

A computerised tomography (CT) scan uses x-rays and a computer to make detailed images of the inside of the 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. 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

Data

Information, especially facts or numbers, that is collected and stored. It can be used to help find something out, for example, in medical research.

Database

An organised collection of information, or data, usually stored electronically in a computer system.

Dermatologist

A doctor who specialises in treating skin conditions

Dermatology

The medical speciality that deals with anything to do with the skin

Dermis

The lower or inner layer of the two main layers of the skin

Desmoplastic melanoma

A rare type of melanoma that is most common on the head and neck, due to them being exposed to the sun more. Desmoplactic melanoma are sometimes described as scar-like and are often skin coloured. These melanomas can grow for months or years before being recognised

Diarrhoea

Passing softer, watery or more frequent poo than normal

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.

Drug Resistance

When a treatment or drug is described as resistant, it means that the action of the treatment has become less effective or no longer works to treat the disease which it is supposed to. With melanoma this can happen because the cancer cells work out how to adapt and resist being attacked and killed.

E

Efficacy

A measure of whether a treatment has the effect that was wanted

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.

Encephalitis

Inflammation of the brain

Epidermis

The upper or outer layer of the two main layers of the skin

Excision

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

Excisional biopsy

A biopsy is 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. This type of biopsy cuts out the melanoma as well as a portion of normal skin surrounding it.

Exclusion criteria

Reasons why a person may not be able to take part in a clinical trial

Experimental

A new treatment or procedure that is still being tested

F

Familial Atypical Multiple Mole Melanoma Syndrome (FAMM or FAM-M)

A type of melanoma that is inherited, meaning that it comes from your parents passed on through their genes. Doctors can identify this type of melanoma when; melanoma has been diagnosed in a family member, including grandparents, aunts, uncles, and cousins, or, if a few family members have large numbers of moles (often more than 50), which may be abnormal.

Fatigue

Extreme tiredness

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.

Feasibility study

A study that asks whether something can be done, if it should continue being explored, and if so, how. In clinical trials this can be questions like; does the hospital have capacity to treat these patients, are there enough patients in need of this treatment, or, how well do patients respond to the treatment.

First line treatment

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

Focus group

A discussion in a small group, guided by questions from researchers. It is used to learn about opinions on a certain topic, and to guide future actions.

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.

Gene therapy

A type of treatment that uses genes to treat illnesses. Researchers have been developing different types of gene therapy to treat cancer. The ideas for these new treatments have come about because researchers are beginning to understand how cancer cells act differently from normal cells. It is still early days for this type of treatment, but some of these treatments are being looked at in clinical trials.

Generic name medicine

The generic name is the drug name or the name given to the chemical active ingredient of a medicine. However, a brand name is the name given by a pharmaceutical company when the medicine first gets approved. After about 10 years, other pharmaceutical companies are allowed to produce the same medicine and they will all have the same generic name (the drug ingredient) and all act in the same way to treat melanoma. For example, nivolumab is the generic name and Opdivo is the brand name.

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’.

Hepatitis

Inflammation of the liver

HLA tissue type

HLA stands for human leukocyte antigens. HLA are proteins, or markers, on most cells in the body. The body's immune system uses HLA to recognise which cells belong in the body and which do not. The immune system can then produce a response accordingly.

HLA-A*0201 positive

The HLA test is a blood test to look at your immune type and, like your blood type, this doesn’t change with time. It is estimated that about 40-50% of the population are HLA-A*02:01-positive, and this may mean certain specific treatments are available to treat your melanoma. For example, tebentafusp that is currently used in advanced uveal melanoma.

Hypodermis

The last or bottom layer of the skin. It's like a fatty cushion that connects the skin and the body organs. It can, among other things, protect the body from shocks and keep the body warm.

Hypophysitis

Inflammation of the pituitary gland

Hypopituitarism

When the pituitary gland (found in the brain) does not produce enough of some of its hormones. These hormones control lots of the body’s functions.

Hypothyroidism

When the body doesn’t produce enough thyroid hormone

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.

Immune-related adverse events (irAEs)

A symptom that somebody experiences when they have been given an immunotherapy treatment

Immunology

Refers to the branch of medicine that studies the body’s immune system

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.

In-transit metastasis

Metastasis found in the lymph vessels more than 2cm away from the primary melanoma. But it has not yet reached the closest lymph nodes

Incisional biopsy

A biopsy is 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. An incisional biopsy removes part of the melanoma from the skin by cutting it out, this is often used for bigger lesions.

Inclusion criteria

Reasons why a person can be included in a clinical trial. They must have all of these criteria to be able to take part in the clinical trial. These may be things like, age (e.g. above 18 years) , stage of melanoma, or, previous treatments.

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.

Infusion-related reaction (IRR)

An allergic reaction that can happen when a treatment is infused through the vein. Symptoms can vary from mild to severe

Injection site pain

Where an injection is given through the skin is known as the ‘injection site’. Sometimes pain can be experienced after an injection

Intervention

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

Interventional

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.

Intramuscular

An injection given into a muscle (often in the upper arm or the top of the thigh/bottom)

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.

J

Jaundice

When the skin and whites of the eyes appears yellow due to the liver not working properly

K

Kidney failure

When the kidneys aren’t working properly

L

Laterality

Talks about one side of the body or the other, e.g., left or right

Lentigo maligna melanoma

They usually affect older people who have spent a lot of time outdoors. They appear in areas that are often open to the sun, such as the face and lower arms. They are flat and look like a freckle, but they’re usually larger, darker and stand out more than a normal freckle and they can gradually get bigger and may change shape.

Lesion

A part of the body that has changed or is different, this could be because of damage due to an injury or a disease, for example, cancer. Doctors may talk about melanoma as a lesion.

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.

Lymph vessel

Tube that connects the lymph node system to allow the lymph fluid to move around the body.

Lymphadenectomy

Surgery to remove one or more lymph nodes to check for melanoma. Can also be called a lymph node dissection. After the lymph nodes are removed, a sample of tissue is checked under a microscope for signs of melanoma. For a 'regional' lymphadenectomy, only some of the lymph nodes in the tumour area are removed. For a 'radical' lymphadenectomy, most or all of the lymph nodes in the tumour area are removed.

Lymphatic system

A network in the body made up of lymph vessels and lymph nodes. This network is a part of the body’s immune system. It collects any fluid, waste material, and other things (like viruses and bacteria) that are in the body tissues, outside the bloodstream.

Lymphedema

Abnormal swelling of the arm(s) or leg(s), and occasionally swelling in other parts of the body when there is an accumulation of fluid in the lymphatic system due to a blockage in the lymph vessels.

Lymphopenia

When the blood doesn’t have enough of the white blood cells called lymphocytes. White blood cells help the immune system fight infection

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.

Malignant tumour

A cancerous tumour (group of cells) that develops when cells grow uncontrollably.

Margin

The edge or border of the melanoma and surrounding tissue removed in surgery (resection).

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.

Melanin

The substance made by melanocytes that gives colour to skin and eyes and that absorbs ultraviolet rays from the sun.

Melanocyte

A specialised cell that makes melanin, which gives the skin, hair and eyes their colour and helps protect the skin against damage from sunlight.

Melanocytic lesion

The medical term for a mole

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.

Meningitis

Inflammation of the protective layers covering the brain and spinal cord

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

Mitotic rate

A measure of how fast cancer cells are dividing and growing. Mitotic rate is used to help find the stage of melanoma.

Mohs surgery

A special technique to remove the melanoma while sparing the healthy tissue, to create the smallest possible scar. This is used on areas of the body that need special care such as the face, ears, lips, hands, or genitals.

Mole

A non-cancerous (benign) growth on the skin (usually tan, brown, or flesh-coloured)

Monotherapy

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

MRI scan (Magnetic Resonance Imaging)

Magnetic fields are used 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. If you have any metallic implants such as aneurysm clips or implantable cardiac devices such as a permanent pacemaker or implantable cardioverter defibrillator, let your doctor or nurse know. You may still be able to have an MRI scan but this may require a little more time to organise as you may need to be referred to a larger hospital, sometimes known as a teaching hospital. An MRI scan can take anything between 20 minutes to over an hour, but usually around 30 minutes.

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.

Myocarditis

Inflammation of the heart

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.

Neoplasm

An abnormal growth of tissue that happens when cells in a certain part of the body divide and grow very quickly. It can also be called a tumour. Melanoma is a neoplasm.

Neuropathy

Damage to the nerves

Nevus

Another name for a mole; a non-cancerous (benign) growth on the skin (usually tan, brown, or flesh-coloured).

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.

Organ

A part of the body that performs a specific function, for example, the heart, lungs or kidneys.

Overall survival rate

The results from a clinical trial that show how many people have survived for a certain amount of time after their diagnosis of melanoma. This can be used to see if a certain treatment in a clinical trial makes this time longer, compared to having no treatment. Overall survival rate is usually looked at after 5 years and 10 years.

P

Palliative care

Sometimes called 'suppotive care' it offers physical, emotional and practical support to people with a serious illness. Palliative care aims to make sure people feel supported and comfortable, and improve their quailty of life, rather than cure the disease.

Pancreatitis

Inflammation of the pancreas

Paraesthesia

A burning or prickling feeling, usually felt in the hands, arms, legs, or feet

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.

Paralysis

When you can’t move certain parts of the body

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.

Peri-operative

The time around and including surgery. For example it could be talking about the type of care or treatment given for a specific amount of time before and a specific amount of time after surgey.

PET scan (Positron Emission Tomography)

A radiotracer (radioactive substance) is injected into the arm which can be detected in a PET scanner. This will show detailed images of the inside of the body. This scan is often combined with CT scans to produce even more detailed images, this is known as a PET-CT scan.

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.

Pituitary gland

A small pea-sized gland in the brain that helps to control a lot of the body’s functions

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

Pneumonitis

Inflammation of the lungs

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.

Prognosis

The likely outcome or course of a disease; for example, if there is a chance of recovery or if the disease may come back.

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.

Punch biopsy

A biopsy is 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. A punch biopsy uses a device a bit like a hole-punch for paper. It is used to remove a small melanoma or part of a bigger melanoma.

Q

Quality of life

A patient's ability to enjoy normal life activities. Doctors may talk about quality of life in terms of cancer and it's treatment and how these might affect a patient. For example, having to go to many hospital appointments or possible side effects from a treatment, and how these may affect their normal daily life.

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.

Regressing melanoma

Regression means returning to how something was before, or to a smaller size. A regressing melanoma is reacting to the body’s own immune system by shrinking in size. Partial regression is not uncommon with primary melanomas, complete regression is very rare. Regressive melanoma is usually thinner than it was before.

Relapse

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

Resectable

Melanoma that can be fully removed by surgery

Resected

The whole melanoma has been removed by surgery

Resection

The removal of the whole melanoma by surgery

Response rate

The number of patients whose melanoma tumour shrinks or can no longer be detected after receiving a treatment.

Risk factor

Anything that increases the chance of a person getting a disease

S

Saline

Saline is a mixture of salt and water. It is often called a 'normal' saline solution because the amount of salt it contains is similar to tears, blood and other body fluids. It has many medical uses. For example, it can be given to someone through a vein to hydrate them or can be used to clean the skin.

Satellite

Small areas where the melanoma has spread very close to the primary melanoma

Second line treatment

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

Secondary tumour / melanoma

Sometimes cancer cells can break away from the primary melanoma and settle and grow in another part of the body. This new melanoma growth is called secondary cancer.

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.

Shave biopsy

A biopsy is 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. A shave biopsy cuts off a small part of melanoma from the surface of the skin. It usually done using a small surgical knife called a scalpel.

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.

Stereotactic radiosurgery (SRS)

A type of radiotherapy treatment that uses lots of very accurately focused radiation beams to treat metastases in the brain. Although the name includes ‘surgery’ there is no cut made through the skin. A very accurate machine focusses the radiation beams over the area of the head where the metastases are, and they pass through to the brain to damage the cancer cells and shrink the metastases. This should cause very little damage to the surrounding healthy tissue cells of the brain.

Subcutaneous

Underneath the layers of the skin

Superficial spreading melanoma (SSM)

The most common form of melanoma in pale-skinned (Caucasian) people, causing around seven out of 10 (70%) of all melanomas in the UK. The main sign of superficial spreading melanoma is an unusual-looking spot that changes in size or appearance. Other signs include spots with uneven borders or color variations in the same spot. It starts growing along the top layer of the skin but over time it can spread into the deeper 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.

Systemic treatment

Treatment in which medications travel through the bloodstream to all parts of the body to fight the melanoma. Examples of systemic treatments for melanoma are; immunotherapy and targeted therapy.

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.

Thrombocytopenia

When the blood doesn’t have enough of the red blood cells called platelets. Platelets help the blood stick together when there is an injury or cut.

Thyroid dysfunction

When the thyroid gland isn’t working properly. The thyroid hormones help to control some of the body’s functions.

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.

Tumour

An abnormal growth of tissue that happens when cells in a certain part of the body divide and grow very quickly. It can also be called a neoplasm. Melanoma is a type of tumour.

Type 1 diabetes

When the body is unable to produce insulin, the hormone that controls the levels of sugar in the body.

Type 2 diabetes

The pancreas makes less insulin than it used to, and the body becomes resistant to insulin, the hormone that controls the levels of sugar in the body

U

Ulcerated

Broken down skin that is on top of the melanoma.

Ultrasound scan

Uses a hand-held probe, moved over the outside of the body, that uses high frequency sound waves and a computer to look at organs inside your body.

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.

V

Vertical Growth Phase (VGP)

Melanoma can be described by doctors as VGP 'present' or 'absent'. If it is VGP present this means that the melanoma is growing vertically i.e. deeper into the tissue.

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.

Wild type

Describes genes within a melanoma that have no mutation and are normal. For example, in gene testing results, instead of saying BRAF 'negative', BRAF 'wild type' may be used to confirm that the melanoma doesn't have a BRAF mutation.