About cancer of unknown primary (CUP)

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1 About cancer of unknown primary (CUP) This information is an extract from the booklet Understanding cancer of unknown primary. You may find the full booklet helpful. We can send you a free copy see page 5. Contents Cancer of unknown primary (CUP) Why the primary cancer can t be found Symptoms of CUP Types of CUP Cancer of unknown primary (CUP) Cancer can sometimes spread from where it first started to grow (the primary cancer) to form a new cancer in another part of the body (secondary cancer). CUP is a term used when a secondary cancer is diagnosed, but doctors can t tell where the primary cancer started. Your doctors may arrange tests to try to find out where the cancer first started. But in many cases, even after these tests, the primary cancer cannot be found. CUP affects about 3 5% of people with cancer. People with CUP often have more than one secondary cancer. It is more common in people aged 60 or over, but it can affect people younger than this. When a new tumour is found, it s not always obvious what type of cancer it is. You ll have tests and investigations to find out whether it is: a primary cancer a secondary cancer the primary cancer is then identified after the secondary cancer a true CUP when it s not possible to identify a primary. Questions about cancer? Ask Macmillan Page 1 of 5

2 When you ve had only a few tests, your doctors may know that the cancer is a secondary, but they may not be sure where the primary is. This is called a malignancy of undefined primary origin (MUO). If they still can t find a primary after more tests, the cancer may then be described as a provisional CUP (pcup). You will then have more detailed tests and a doctor who specialises in the treatment of CUP will look at all the results. This is done before a diagnosis of confirmed CUP (ccup) can be made. Sometimes, tests will find the primary cancer. When this happens, the cancer is no longer called CUP. If your doctors can t be sure of the primary cancer, they may be able to suggest a possible part of the body where the cancer started. This will be based on where the secondary cancers are, your symptoms and the test results. The test results will also suggest how the cancer might behave. This will help your specialist to plan your treatment. Why the primary cancer can t be found There are different reasons why a primary cancer can t always be found: It may be too small to be picked up on scans or be hidden beside a larger secondary cancer. It might have disappeared, even though it has spread to other parts of the body. This can sometimes happen if the body s immune system has successfully got rid of it. It might have been passed out of the body. For example, a small cancer in the wall of the bowel may become detached and leave the body in the bowel motions (stools). Symptoms of CUP Symptoms of CUP will vary depending on where the secondary cancer (or cancers) are. Some examples are: Secondary cancer in the lung You may have a cough that doesn t go away or breathlessness. You may have fluid collecting around the lungs, called pleural effusion. Page 2 of 5 Questions about cancer? Ask Macmillan

3 Secondary cancer in the bone You may have a dull, persistent pain in the bone that s often worse at night. Sometimes if a bone is weakened by cancer, it will break (fracture). Secondary cancer in the liver You may have a swelling and discomfort in the tummy (abdomen). You may feel sick and lose your appetite, or have yellowing of the skin and eyes (jaundice). You may have a collection of fluid in the tummy, called ascites. Secondary cancer in the lymph nodes (glands) Your lymph nodes may be swollen and feel hard. They may be painful if they re pressing on tissue or nerves nearby. The most common lymph nodes to be affected are in the neck, armpit, chest and groin. General symptoms You may also have some general symptoms, including: unexplained weight loss loss of appetite feeling extremely tired all the time looking pale, and feeling tired and breathless, due to a lack of red blood cells (anaemia). All the symptoms mentioned here can be caused by conditions other than cancer, but it s important to see your doctor and get them checked. Types of CUP Your doctor may want to take a sample of tissue (biopsy) from the secondary cancer. This is to examine the cells under a microscope. By looking at their appearance and from doing tests on the cells themselves, doctors can usually be fairly confident about where they ve spread from. For example, cells from a primary breast cancer that have spread to the liver will usually still look like breast cancer cells. With CUP, doctors can t tell what part of the body the cancer started in, but they may be able to find out the type of cell that has changed. This can give them more information about the possible behaviour of the cancer and will help them plan your treatment. Questions about cancer? Ask Macmillan Page 3 of 5

4 There are five different types of CUP. These are: adenocarcinomas poorly differentiated carcinomas squamous cell cancers neuroendocrine carcinomas undifferentiated neoplasms. Adenocarcinomas These develop from gland cells that line or cover certain organs in the body. The majority of people with CUP have an adenocarcinoma. The most common parts of the body for them to start in are the lungs, pancreas, bowel, kidneys, liver, stomach, ovaries, womb and breasts. Poorly differentiated carcinomas About 30% of people with CUP (3 in 10) have poorly differentiated carcinomas. Poorly differentiated means the cancer cells look very different from normal cells so it s difficult to tell what type of cancer the primary was. Squamous cell cancers These develop from flat cells usually found on the surface of the skin or in the lining of internal surfaces of the body, such as the airways. About 5% of people with CUP (1 in 20) have squamous cell cancers. These can start in the lungs, skin, head and neck area, gullet (oesophagus) and cervix. Neuroendocrine carcinomas About 3% of people with CUP (3 in 100) have neuroendocrine cancers. These are a type of cancer made up of specialised nerve cells that produce hormones. Undifferentiated neoplasms The cells look extremely different to normal cells and it s not possible to determine what type of cancer it is. About 5% of people with CUP (1 in 20) have this type. Further tests may sometimes be able to tell the doctors more about what type of cancer the primary was. Page 4 of 5 Questions about cancer? Ask Macmillan

5 More information and support More than one in three of us will get cancer. For most of us it will be the toughest fight we ever face. And the feelings of isolation and loneliness that so many people experience make it even harder. But you don t have to go through it alone. The Macmillan team is with you every step of the way. To order a copy of Understanding cancer of unknown primary, visit be.macmillan.org.uk or call We make every effort to ensure that the information we provide is accurate and up to date but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication, or thirdparty information or websites included or referred to in it. Macmillan Cancer Support Registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Registered office 89 Albert Embankment, London, SE1 7UQ REVISED IN APRIL 2014 Planned review in 2016 Questions about cancer? Ask Macmillan Page 5 of 5

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