In a UK study involving 105 people, video-taped for accuracy, the conclusions were simple: many patients just don’t understand the terms used in cancer consultations by doctors.
Here we present a simple translation of all the complicated medical terms a Doctor might use when talking to you, especially about cancer -
Ginny Fraser provides an essential guide for anyone who doesn’t speak doctors’ language.
Failing to understand the Doctor's message
Not understanding what your doctor actually means at the moment of diagnosis is very likely to cause immense stress at an already difficult time - and could be crucial in terms of making the right treatment choices.
Yet research done by CancerBACUP has revealed that almost two thirds of people just don’t understand their doctor at this crucial moment. This may just be due to the stress of the moment, but two other research studies in 2004 and 2005 were quite clear; over half of all patients simply do not understand "Doctor-speak".
Although very few doctors have learnt Latin, many still use Latin terms - which oalso adds a problem and can mean one language for the doctors and another for the patients.
Then there are the indecipherable acronyms (PETs, CATs, MRIs, for instance), and the question of medical euphemisms - phrases sometimes used by doctors to soften the blow of a difficult diagnosis.
Terms like "cluster of cells"; "abnormal growth", "mass", "troubling lab results" or "curious shadow on your x-ray" are sometimes thrown in rather than saying that big scary word CANCER. Though according to a study in Journal of American Medicine, cancer euphemisms have lost their ability to soothe and now scare people every bit as much as the word cancer itself.
Even the doctors’ job titles are hard to fathom. Is a registrar better qualified than a resident? Is that bloke they call Mr as qualified as a doctor? In fact, surgeons are called Mr rather than Dr.
A quick guide to job titles (going down the medical hierarchy) reads as:
Oncologist (Supposed to know all about cancer);
Radiologist (Sorts out your radiotherapy);
Consultant (the boss);
Surgeon (Knows about surgery - on no account believe them if they say you're All Clear. They just do surgery);
Specialist Registrar (someone who is training to specialise in, for example, cancer);
Senior House Officer (SHO) (qualified and has been around for a while);
PRHO (pre-registration house officer).
The CANCERactive oncology (whoops, that means cancer) translation kit.
A
ABLATION – the removal of an organ or body-part through surgery
ADJUVANT – the use of chemotherapy or radiotherapy after surgery
AGGRESSIVE – a description used about a tumour that is fast-growing
“ALL CLEAR” – often given by doctors to mean there is no sign of cancer in the system. Does not mean the cancer has necessarily gone for good.
ALTERNATIVE MEDICINE / TREATMENT – non-orthodox treatments designed to have a direct impact on disease. These would include homeopathy, hyperthermia or B17 treatment. It differs from COMPLEMENTARY TREATMENT in that it offers a true alternative rather than a complement to orthodox treatment.
ANGIOGENESIS – a tumour’s ability to create its own blood supply system
ANTIBODIES – proteins produced by the immune system to counteract an antigen
ANTIGEN – a substance that the body recognises as alien and which triggers an immune response.
B
BALANCED DIET - a balanced diet means eating a wide variety of foods to give you all the energy, protein, vitamins and minerals you need to stay healthy. For most of us, that means eating more fruit and vegetables, more fibre, less fat and cutting down on sugar, alcohol and salt. Aim to eat at least 5 portions of fruit and vegetables each day.
BIOPSY – a test to help make a diagnosis, where part of the tumour is taken for investigation. Biopsies can be done with a needle to extract a few cells or done during surgery.
BENIGN – when a tumour is found not to be cancerous. A benign tumour is a harmless growth, which may or may not be operated on.
BIOPSEY - a test to help make a diagnosis, where part of the tumour is taken for investigation. Biopsies can be done with a needle to extract a few cells or done during surgery.
BLASTOMA – a tumour thought to arise in embryonic tissue. Often used as part of the name for different types of tumours eg glioblastoma and medulloblastoma (types of brain tumors), hepatoblastoma (a liver tumor), nephroblastoma ( Wilms tumor of the kidney), neuroblastoma (a childhood tumor of neural origin), osteoblastoma (a bone tumor) and retinoblastoma (a tumor of the retina).
BLOOD SERUM – a watery yellowish fluid which separates from clotted blood and is a bit like plasma but with no clotting agents in it
BRACHYTHERAPY – a radio-active treatment where the tissues being treated are actually touched by the radio-active material.
C
CANCER - growth of altered body cells that can keep on growing and is able to spread from where it started to another part of the body. The medical word for a tumour "neoplasm" means "new growth". It is when growth gets out of control and spreads that those cells can cause a problem
CANCER CURE - as all adults get malignant cancers regularly that their bodies control or destroy, it is questionable whether there is ever a ’cure’. If the cancer is caught at an early stage, surgically removed and with no obvious signs of spreading, maybe that is the case. In any event, when a person is No Evidence of Disease or in Remission, there is every reason to applaud and appreciate the miracle and beauty of life and to make small lifestyle and dietary improvements to help the body fight off any recurrence of cancer.
CANCER TYPE - where the cancer started. The type of cell that has become cancerous will be the primary cancer - for example, if a biopsy from the liver or lung contains cancerous breast cells, then the primary cancer is breast cancer. The breast cancer has spread to the liver or lungs (where it is called the secondary cancer)
CANCER VACCINES - experimental treatment currently being researched that may be able to limit cancer growth or eventually, stop people getting cancers. Research for this type of treatment is at a very early stage
CARCINOMA – a cancer of the epithelium or glands. Epithelium refers to the layers of cells covering an organ, including the skin and linings of all hollow cavities in the body
CAT SCAN – (Computer Automated Tomography), a method for scanning the body to check for tumours. Patients lie down and are moved through what looks like a huge doughnut-shaped scanner that takes many “slices” of photographs of the body parts being scanned to provide a comprehensive picture.
CENTRAL OR HICKMAN LINE - a central line is a long plastic tube (like a drip) that goes into a large vein near the heart. They can be used for taking blood samples and giving drugs, including chemotherapy. In some types the tube comes out of the body at the side of the neck, or into the chest. An injection can be given into the tube, or a drip attached to it. In other types called ’ports’ a small chamber or reservoir is placed at the end of the tube under the skin in the chest or arm. A needle goes into the chamber for giving injections or attaching drips. There are many different makes of central lines.
CHEMOTHERAPY - drug treatment - usually used to mean with anti-cancer drugs. The drugs used are often poisons in doses controlled so as to be absorbed by, and destroy, fast growing cells – the cancer cells. My feeling is that when taking chemo, if you feel unwell, just imagine how bad the cancer cells feel!
CHEMOTHERAPY COURSE (COURSE OF CHEMOTHERAPY) - a series of anti-cancer drug treatments. Usually about six treatments make up a course. A treatment is given every two, three or four weeks. So a course can take six months.
CHEMOTHERAPY PUMP (Chemotherapy Pumps, Infusion Pump, Infusion Pumps, Pump, Pumps) - machine which controls how fast anti-cancer drugs are given. Some types of pump are attached to a drip. Other types are small, portable pumps which hold their own syringe or bag of drugs. The portable pumps can be used at home, with trips to the hospital only to change the syringe or bag.
CHEMOTHERAPY TRIAL - research study looking at a particular chemotherapy treatment. Usually compares the new treatment with existing treatment to see which works best and find out the benefits and drawbacks.
CHEMOTHERAPY – The use of strong chemicals to kill off rapidly dividing cells ie cancer cells which divide faster than normal cells. It can be NEO-ADJUVANT, which means it is delivered before the primary treatment, for example, with stomach cancer chemo might be used before surgery to reduce the size of the tumour. ADJUVANT chemotherapy is delivered after initial treatment.
The chemicals can be delivered in many ways – in tablet form, through an IV drip or through a BOLUS, which is an injection administered intravenously by a nurse. There are many different types of chemotherapy agents around and different lengths of regimen. Most common are those where there is time off between treatments that are spread over a number of weeks or months.
CLINICAL TRIALS – a trial of a drug or other therapy that has been carried out on people or using human tissue (as opposed to trials on animals)
COMPLEMENTARY THERAPY – different types of therapies that can be used alongside orthodox treatments, but which are not curative in themselves (for example, reflexology, aromatherapy etc). Such therapies are used to help reduce stress and promote a feeling of well being, or to control cancer symptoms and treatment side effects. Increasingly current research is showing such therapies as also helping with the medical condition for some patients.
CT SCAN (CAT SCAN, CT SCANS) computerised tomography scan. X-ray scan using a computer to construct pictures of inside the body in cross section.
CURE – erm, sorry, this is not in the usual “docspeak” vocabulary (doesn’t mean it doesn’t happen though!)
D
DIAGNOSIS – the process of identifying the nature of an illness through examination and noting symptoms
DENDRITIC CELL VACCINES - dendritic cells help the immune system to recognise and attack abnormal cells, such as cancer cells. To make the vaccine, the scientists grow the dendritic cells alongside the cancer cells in the lab. Then they give the vaccine to the patient to stimulate their immune system to attack the cancer.
DNA - stands for DeoxyriboNucleic Acid. Genes are made of DNA. DNA is the ’genetic code’ that controls how the body’s cells behave by controlling the type of protein they make. We inherit half our DNA code from our mother and half from our father.
DNA VACCINES - DNA contains the genetic code for all proteins made by cells. Cancer cells make some abnormal proteins that the immune system recognises as foreign. But because cancer cells are quite like normal cells, the immune system may respond too weakly. DNA vaccines aim to focus the immune response. They are made with bits of DNA from cancer cells that carry the code for the abnormal proteins. When a DNA vaccine is injected, it makes the cells of the immune system better at recognising the abnormal proteins, and so activates the cells in the immune system. The most promising results from using DNA vaccines are in treating melanoma.
DOSE OF RADIOTHERAPY - When radiotherapy treatment is planned, the total dose needed to kill the cancer is worked out. This depends on where in the body is being treated. The total dose is then broken down into a number of treatments called fractions. Usually one fraction is given per day. All the fractions added together add up to the total dose.
DOUBLE BLIND TRIAL - trial where neither the doctor nor the patient know which treatment the patient is having. This is done to try to prevent bias affecting the trial results. However the patient also does not know whether he/she is receiving the latest treatment, or not.
E
EARLY CANCER - means a cancer that has been diagnosed at an early stage. In other words it is a small tumour that has not spread.
ENDOSCOPY – an examination inside the body using a thin tube with a fibre-optic light
ENDOCRINE SYSTEM – a system of glands that produce hormones into the bloodstream, for example, hormones like adrenaline, thyroxine, and testosterone.
G
GENE – a unit of DNA
GENETIC TESTING – checking via a blood test for genes that may
GENE THERAPY – replacing missing or damaged gene variations in the cells by inserting the appropriate genes
GENOME – a set of all the genes of an individual
GRADE (OF TUMOUR) – Different types of cancer have individual system for grading the severity of the tumour. For example, in melanoma (skin cancer) there are two ways of describing thickness of the tumour named after the doctors who developed them – Clark and Breslow. For prostate cancer the test is know as Gleason.
H
HISTOLOGY - the study of body tissues and cells. A biopsy is ’sent for histology’. This means it is being looked at under a microscope to find out what type of body tissue it is or, if a cancer, what type of body cells the cancer cells most look like. Your specialist can usually tell from the histology report whether a cancer started to grow where it was found, or whether it has spread from somewhere else in the body.
HOLISTIC APPROACH - a treatment regime that encompasses all factors that influence the internal environment within a persons body. Such approaches often involve a more natural diet, plenty of clean drinking water, removal of potentially damaging chemicals either in the house, in substances used and absorbed through thin membranes ( e.g. toothpastes, shampoos) or in foods (organic foods exclude pesticides, herbicides, fungicides) and also encompass psychological therapies such as hypno-therapy or meditation. A persons psychological status influences the physiological status, so removing stressors, even by such practices as Healing, maybe can help Tip that person’s balance positively.
HORMONAL AGENTS – A type of treatment – usually tablets – that act in cancers that are normally hormone sensitive, ie affected by hormones such as oestrogen and testosterone. Examples might be tamoxifan for breast cancer or zoladex for prostate cancer.
HOSPICE - a place people where can go for treatment and relief of symptoms from their cancer when treatment is no longer helping. Hospices aim to care and support people with cancer and their families, maintaining the best possible quality of life for as long as possible. They usually offer care either as a day patient, when you go for the day, or as an in-patient when you stay in for a period of time. My recommendation is to go and visit your local hospice – it is not as frightening a place as it may sound.
HYPERTHERMIA – the use of heat to improve the efficacy of other cancer treatments (eg chemotherapy), and to stimulate immune response.
I
IMMUNOTHERAPY – a treatment for cancer where the patient’s own white blood cells are used attack the cancer cells
IMMUNO-SUPPRESSION – During chemotherapy, the chemicals can knock out some of the good cells the body needs as well as the cancer cells, so the WBC (white blood cell) count is often depressed (down) after chemo. That’s why doctors will wait until the count recovers (goes up again) before the next treatment.
IMMUNE SYSTEM - system of the body that fights infection and causes allergic reactions. Includes the lymph glands, spleen and white blood cells.
INTERFERON - type of immunotherapy. Natural substance produced in the body in tiny quantities as part of the immune response. Given in much larger quantities as treatment to boost the immune system and help fight the cancer. There are different types of interferon eg interferon alpha.
INTERLEUKIN 2 (IL2) - type of immunotherapy. Natural substance produced in tiny quantities as part of the immune system. Given in much larger doses as treatment to boost the immune system and help fight the cancer.
L
LESIONS - these are areas shown up on scans which have different characteristics to that expected. They may be cancers, but also they may arise from mother causes ( e.g. cysts). To determine which often involves a biopsy where a small piece of tissue is removed and is inspected closely.
LYMPH NODE BIOPSY - taking out a lymph node to look at it under the microscope. This is to see if it contains any cancer cells. It is a very small operation. It is normally done under a general anaesthetic, but you should be able to go home the same day.
LYMPHOEDEMA - swelling (usually of an arm or leg), often painful, caused by removal of lymph glands leading to a blockage in the flow of the lymph.This can happen after surgery or radiotherapy to the armpit or groin, or because the cancer is affecting the lymph glands.
LUMPECTOMY – an operation (often referred to in breast cancer) where the tumour is removed, leaving the surrounding tissue intact
LYMPH – colourless liquid containing white blood cells that circulates around the body carrying waste matter away from the tissues to the veins
LYMPH NODE – also called a lymph gland, this is mass of lymph tissue situated around the body, especially under the arms (known as axial lymph nodes) and in the groin. They help circulate the lymph around the body. Cancer can spread via the lymph and often tumours can be found here.
LYMPHADENECTOMY – removal of lymph nodes that may contain a tumour or sometimes removed to check for tumour spread
LYMPHOMA – a malignant tumour in the lymph system
LYMPHOEDEMA – swelling, often painful, caused by removal of lymph glands leading to a blockage in the flow of the lymph.
M
MALIGNANCY – usually referring to a tumour which is cancerous and can spread or re-grow
MAMMOGRAM – an x-ray of the breast that can detect tumours that are not able to be felt by examination
MASS – an area of abnormal tissue, often used instead of the word tumour, but not necessarily malignant
MASTECTOMY – the surgical removal of a breast
METASTASIS – spread of cancer from one part of the body to another through the bloodstream or lymphatic system
METASTASES – the name for the tumours that have spread from a primary
MONOCLONAL ANTIBODY – an antibody (a protein) which can be made in a lab by a single clone of a human cell. MABs are designed to seek out abnormal proteins on the outside of a cancer cell and kill the cancer. Still experimental, current examples include Herceptin, which recognises the breast cancer cell that produces too much of the protein HER2.
MORTALITY RATE – number of deaths per year as shown per hundred thousand of the population
MRI (magnetic resonance imaging) – a scanning technique that uses a strong magnetic field and uses the electromagnetic signals emitted by the body to form an image of what is going on. Involves lying in a quite narrow “tube” during the scan
MUTATION – a change in the internal code of your blueprint, your DNA, which affects how the gene behaves. Identifying mutations can help diagnose when there could be risk of cancer. Very rare, and much rarer than oncologists make out. See Epigenetics.
Go to: Epigenetics and why you're not doomed
N
NANOTECHNOLOGY – a very new area of study which is still some years away from being available for patients, but which is potentially very powerful at detecting the most minute molecular changes, long before anything is visible on current scan technology.
O
ONCOLOGY – the study and treatment of tumours
ORTHODOX TREATMENT – sometimes called conventional treatment, but that which is offered in a mainstream hospital, eg radiotherapy, chemotherapy and surgery
ONCOLOGIST - a doctor specialising in the treatment of cancer by chemotherapy, hormone therapy, and biological therapies.
P
PALLIATIVE – treatment designed to alleviate symptoms and possibly prolong life. Research from the Royal Society in the UK said that most Palliative drugs are ineffective and good nursing does a better job! For example, chemotherapy for bone metastases with breast cancer is palliative. (see RADICAL)
PALLIATIVE TREATMENT - treatment given primarily to control symptoms such as pain and sickness, and possibly to prolong life.
PHASE - There are three phases of research in clinical trials - phase 1, 2, 3 and 4 trials.
PHASE 1 TRIAL - Early trial into a new treatment to find out the side effects and some idea of the dose to give. Likely to include patients with different types of cancer.
PHASE 2 TRIAL - Trial that looks at whether a new treatment works. Usually for a particular type of cancer.
PHASE 3 TRIAL - Trial to compare a new treatment with other treatments that are already being used. Looks at the safety and side effects of the treatment as well as how well it works.
PHASE 4 TRIAL - Phase 4 trials are done after a drug has been shown to work and has been granted a license. Pharmaceutical companies run them to find out more about the long term risks and benefits. And to find out how the drug works when it is used more widely than in clinical trials.
PROGNOSIS - based upon historical statistics and previous treatment regimes, the most probable outcome of treatment and life expectancy. Statistics do not count for one person, and recent studies have demonstrated that through lifestyle changes and dietary improvements, many people out-survive their prognosis by a factor or even years!
PHOTODYNAMIC THERAPY – treatment with drugs that can become active when exposed to light. These drugs cancer cells.
PET SCAN – (positron-emission tomography). Positrons are tiny particles emitted from a radioactive substance given to a patient before scanning in a dough-nut shaped machine. Can show changes in biochemical processes that suggest disease before you would see changes on an MRI or CAT scan.
POLYP – a growth that is most often found (in relation to cancer) in the colon. Most colon cancer starts with a polyp.
PLACEBO – a treatment which appears to a drug, but actually has no medicinal value at all
PLACEBO EFFECT – the power of the mind to create health when the it thinks a drug is being administered even when it is not
PRIMARY – the site of the original cancerous growth from which is can spread to other organs
PHYTOTHERAPY – treatment using herbs, plants and other natural substances
PROGNOSIS – an opinion of how a disease is likely to progress. Sometimes when asked for a prognosis, doctors will give an idea of survival time.
PROLIFERATION – often used to describe a multiplication of cancer cells.
R
RADIATION (RADIOACTIVITY) - controlled exposure to radiation can be used in medicine for diagnosis (eg X-rays) or in much higher doses to destroy cancer (radiotherapy).
RADIOTHERAPY - treating cancer with intense radioactive rays such as x-rays or gamma rays
RADICAL – the term for treatment that is intended to hopefully cure (for example, surgery for a malignant mole). (see PALLIATIVE)
RECEPTORS – protein molecules that reside in the nucleus of the cell along with the DNA. For example, oestrogen receptors are inactive when there is no oestrogen around, but when it is present the oestrogen binds to the receptor ultimately causing changes in the cell behaviour eg breast cancer
REMISSION (OR NO EVIDENCE OF DISEASE - NED) – a period when illness is less severe (encouraging, eh?)- if a cancer is in remission, there is no sign of it on scans or when the doctor examines you. Doctors use the word ’remission’ instead of cure when talking about cancer because they cannot be sure that there are no cancer cells at all in the body. So the cancer could come back in the future, although there is no sign of it at the time.
RESPONSE TO TREATMENT - if your disease is described as STABLE then what that really means is that tumour growth is under 20% or shrinkage of less than 30%. A PARTIAL RESPONSE is if there is shrinkage of more than 30%. COMPLETE RESPONSE is if everything has disappeared. If the cancer is termed PROGRESSIVE that means the tumour has grown more than 20%.
S
SARCOMA – a cancerous tumour of related to the bone, muscle or cartilage
SIDE EFFECTS – physical and sometimes emotional effects of cancer treatments, for example, nausea, hair-loss, loss of appetite, mouth ulcers are common side effects of chemotherapy. Radiotherapy side-effects include minor burning which can be alleviated by a cream and tiredness. Also see IMMUNO-SUPPRESSION.
SECONDARY – tumour growth in a different part of the body from the original (PRIMARY) growth. Often secondaries are first found in the LYMPH NODES.
STAGES - The size of a cancer and how far it has spread. Stage 1 and 2 mean that the cancer is confined to the area of the primary tumour (for example, the breast or kidney). This is the best stage to get a diagnosis before the cancer has had a chance to spread. Metastases can be local (a recurrence in the same part of the body) or direct (for example to nearby lymph nodes). This is Stage 3. Distant metastases means the cancer has travelled through the blood and lymph systems to other organs of the body, and this constitutes Stage 4, the most serious stage of the disease.
STAGING (of tumours) - most solid tumours are staged using the TNM scoring system, which stands for tumour, nodes (see LYMPH NODES) and metastases (see METASTASIS). Stage 1 and 2 means that the cancer is confined to the area of the primary tumour, eg breast, kidney. This is the best stage to get a diagnosis before the cancer has had a chance to spread.
Metastases can be local (ie a recurrence in the same part of the body) or direct (for example to nearby lymph nodes). This is Stage 3. Distant metastases means the cancer has travelled through the blood and lymph systems to other organs of the body, and this constitutes Stage 4, the most serious stage of the disease.
SURVIVAL RATES – worked out by the European Organisation for Research and Treatment, and are based on pooled analysis of trial results. They are based on averages, say, of the last 5,000 patients. The averages aspect is important not to overlook. To make up the average you have to people at both ends of the spectrum, and who’s to say where you will be within that range. These usually operate within a five-year time span, as this is the usual period in which patients are monitored.
T
TARGETTED TREATMENTS – those that make substances to stop bad genes from working. For example, in some breast cancers there is a bad gene called HER2, and the antibody Herceptin (much written about recently) neutralises the protein made by the gene.
TUMOUR – an abnormal swelling in the body that could be malignant or benign
TUMOUR MARKER - Substances measured in the blood to indicate the presence and severity of disease. Most solid cancers can be measured in this way, and they are usually used in conjunction with other tests. The prostate cancer measurement, PSA, for example, is notoriously unreliable.
U
ULTRASOUND – the use of high-frequency sound waves which get reflected off body parts to form a picture of organs and any unusual growths.
V
VACCINATION / VACCINE - a substance that contains antigens to a disease that is used to stimulate production of antibodies and provide immunity. Often falsely used now to include drugs or strains of viruses that might carry a drug into a cancer.
W
WHOLISTIC / HOLISTIC – treatment of the whole person rather than just addressing symptoms. Based on the principle that disease is systemic and the whole system needs to be treated.