Helping you to talk out loud about bowel cancer. Supported by

Transcription

1 bowel Lifting the lid cancer on Helping you to talk out loud about bowel cancer Supported by

2 Too shy to talk out loud? British people find it hard to discuss their bottoms and bowel habits it s just something we aren t comfortable doing, but by staying silent, many lives are being lost. Bowel cancer is the third most common type of cancer in the UK and the second biggest cancer killer. There are around 35,000 people who get bowel (colorectal) cancer every year and over half of them are likely to die so early detection is vital. If bowel cancer is caught in good time, there is every chance of being treated and cured. About bowel cancer The building blocks of the body are made up of tiny cells that are repaired and reproduced naturally. But sometimes this process goes wrong and cells can divide and grow in an uncontrolled way, causing a lump or tumour. If the tumour contains cells that can invade neighbouring tissues or organs, it is known as malignant or a cancer. If the tumour does not do this, it is called benign. Bowel cancer forms in any part of the colon or rectum. If left untreated it will increase in size and can block the bowel. Cancer can also spread through the wall of the bowel and into other organs within the abdomen. When a cancer spreads, it is known as a metastasis or secondary. It is not uncommon for bowel cancer to spread to the liver. Less commonly, bowel cancer can spread to other, more distant organs such as the lung or brain. In general, the further bowel cancer spreads from the original site, the less likely it is that the condition will be cured. It is for this reason that early diagnosis and treatment are crucial. There is a lot of scary language about bowel cancer so this booklet is designed to lift the lid on everything to do with the disease and explain the terminology in a way that s easy to follow. Knowing the symptoms and being prepared to talk about them means that any cancerous cells can be detected early, offering the best chance that the cancer will be cured. About the bowel The large bowel, also known as the colon, is a curved tube of muscle around four feet long. It runs from the ceacum to the rectum (see diagram). It is the lower part of the intestine and its job is to absorb water and nutrients from the digested food that passes through it. The large bowel is divided into three sections the ascending, transverse and descending colon. The rectum, at the end of the colon, is where waste matter is collected before it exits the body when we go to the toilet. Who gets bowel cancer? About one in 18 people in the UK will develop cancer in their bowel or rectum (colorectal cancer) at some point in their lives. Cancer of the small bowel is much rarer. The reason why some people get cancer and others don t is still unclear, but there are certain factors that can increase your risk: eating a diet that is low in fresh fruit, vegetables and fibre long-term conditions of the bowel such as ulcerative colitis a history of the disease in close relatives an inherited condition where large quantities of benign growths called polyps form on the lining of the bowel an inactive lifestyle and a lack of regular exercise If you have a close relative who was diagnosed with bowel cancer when they were under the age of 45, or you have more than one close relative who has been affected by bowel cancer, then you should ask your doctor whether you need screening for the disease.

3 Is it bowel cancer? Blood mixed in your number 2 s is a particular cause for concern. Spotting of bright coloured blood on the toilet paper or in the bowl is also a concern, but it is more likely to be due to piles. Other possible symptoms of bowel cancer include: tiredness and breathlessness this can be caused by anaemia a change in bowel habits unexplained constipation or diarrhoea abdominal pain unexpected weight loss If you have any of these symptoms, particularly if you are over the age of 45, you should go and see your doctor. However, having some of these symptoms does not necessarily mean you have bowel cancer as several other conditions cause similar symptoms. what do the symptoms mean? A number of other conditions can have similar symptoms to bowel cancer Here are some of the common ones: Piles (haemorrhoids) - are due to swollen areas in the wall of the rectum and around the anus. They usually cause anal pain and itching, as well as bleeding and are very common in pregnancy. Bright bleeding on toilet paper, or sudden large amounts of blood in the toilet bowl is almost always caused by piles. Anal fissure - a tear in the lining of the gut or the skin around it. This is sometimes caused by constipation and can generally be treated by special creams. A fissure causes pain when you go to the toilet, and can cause a little fresh bleeding, typically noticed as bright red streaks of blood on the toilet paper after wiping your bottom Polyps are abdominal growths growing out of the lining of the large intestine. These don't usually turn into cancer but they can cause bleeding and a change in your bowel habits. Irritable bowel syndrome (IBS) - refers to a collection of symptoms, including stomach pain and changes to bowel habits (diarrhoea and constipation). There is no known cause for IBS but people with it often use a number of different techniques to help them cope with it. Diverticular disease - this is common in older people. It is a condition of the large bowel where small pouches form in the wall of the bowel. It may cause symptoms similar to irritable bowel syndrome and can be helped by changes in diet. Ulcerative colitis - symptoms include bleeding and mucus in your number 2 s. Your doctor should monitor this condition as it increases your risk of bowel cancer. If you've experienced a change in your bowel habits, try experimenting with your diet such as eating more or less fibre - to see if the symptoms go away. If they do, it probably wasn't serious. You can also talk to your pharmacist who may be able to offer some suggestions. However, if symptoms continue for more than six weeks or there is bleeding from your bottom, you should talk to your doctor, especially if you have no other symptoms of piles, such as itching around the anus area.

4 Seeing your doctor if I have the symptoms Experiencing symptoms such as bleeding from the bottom can be alarming, but try not to panic as most of the time they won t be caused by cancer. The best thing to do is make an appointment to see your doctor and then prepare for your consultation. Your doctor will ask you questions about your symptoms. These questions may feel a little awkward to answer, but just remember your doctor is used to talking about "embarrassing" subjects. To help your doctor make an accurate diagnosis, try to have the answers to the following questions ready: When did the problem begin (preferably a date)? Have you had this problem before? If so, when and for how long? Your doctor will usually examine you which may include feeling your abdomen for any tender areas and examining your rectum with a gloved finger, for any lumps. These tests are perfectly normal and your doctor will be used to doing them. Further tests may be arranged by your doctor with a hospital specialist. These include: Blood tests Tests for anaemia (lack of iron in the blood) and to check liver function may be done. Colonoscopy and sigmoidoscopy These are investigations using a long, thin telescope (a colonoscope or sigmoidoscope) that is passed into the bowel through the bottom to enable the doctor to see the lining of the bowel. The same instrument can also be used to remove polyps and take a sample (biopsy) from areas that may appear abnormal. These samples are then sent to a laboratory for examination under a microscope by a pathologist. Barium enema This involves placing a fluid containing barium (a substance which shows up on X-rays) into the bowel via your bottom. It helps to show the inside of the bowel on an X-ray so that any abnormalities can be more easily seen. Other tests These may include ultrasound, MRI and CT scans (see glossary). They help detect cancer and other abnormalities and can also help assess if the cancer has spread or not. What symptoms do you have and is there a pattern to them? Has the problem stayed the same, got worse or got better? Is there anything that seems to help your symptoms or make them worse? Have you taken medicines for it in the past, or now? Could any recent lifestyle changes have triggered the problem? Do you have a family history of bowel cancer? Is there anything else that is worrying you?

5 What if I need treatment? If symptoms are caused by polyps, these can be removed during a colonoscopy. Regular checkups, including further colonoscopies, may then be all that is needed. If bowel cancer is detected, further tests will be undertaken to assess if and how far, the cancer has spread. This is called staging and it helps your doctor to recommend the most appropriate treatment. Generally bowel cancer is divided into four stages: stage A is when it is small and within the bowel; stages B and C are when it has spread into surrounding tissue; and stage D when it has spread to other parts of the body. Another system classifies the cancer into three stages depending on how deeply the cancer has gone into the bowel wall, whether lymph nodes (small glands that help to fight infection) are affected and whether cancer has spread to other parts of the body (secondaries). Treatment will be tailored to your needs; your general health and the type and stage of the cancer will all be factors taken into account. About 60 percent of people will need surgery to remove a segment of the bowel and this is a perfectly normal procedure. In many cases the bowel will continue to work as before, but in a few cases, a colostomy will be needed. A colostomy involves diverting the end of the bowel out through a hole in the stomach. A bag is then attached to collect the waste matter. Specialist nurses (stoma nurses) are available to offer advice and support. Courses of chemotherapy and/or radiotherapy may be needed in addition to surgery. These treatments destroy any remaining cancer cells and prevent it spreading further. Treatment may also be given to shrink the cancer prior to surgery. Questions to ask your doctor if you need surgery Here are some questions you may wish to ask your doctors and nurses about your treatment Is surgery the best option for me? Are there any alternative treatments? What are the risks and benefits of surgery and alternative treatments? What complications or side effects might I experience? Where will the surgery be performed and how long will I be in hospital? How much experience do you have of this kind of operation? How many operations like this have you performed in the last year? How about the hospital - does it have a specialist team for looking after patients having this type of operation? Do you have any figures on your success and complication rates for the operation I m having? What support or help can I get after I leave hospital? If I need to have chemotherapy or radiotherapy, how often and how will treatment be given? What benefits will chemotherapy or radiotherapy give me? What are the possible side effects of chemotherapy or radiotherapy and how can they be minimised? How will treatment affect my lifestyle, such as my diet, my ability to play sports and my sex life?

6 Friends and family Case study - Susan Baker In September I had two incidents of rectal bleeding - something that was not normal for me so I made an appointment to see my GP. I was referred to a bowel specialist on 28th October who confirmed that I had a malignant growth. Things happened fast then and I was operated on to remove the tumour a week later. I spent just over a week in hospital afterwards and then took three talking to people about your condition months off work to recover. Fortunately I didn t need any chemotherapy. The impact on my life was devastating. Receiving a cancer diagnosis sent me off on an emotional roller coaster ride but with the support of my husband, family and friends, not to mention the nurses and medical team, I ve now pulled away from those dark days. I ve reassessed my attitude to life - for me it really is about trying to find a home/work/me life balance. Cancer has been a part of my life, it doesn t define it....there is every reason to be positive even with a diagnosis Case Study - Ron Bass Twenty five years ago my GP discovered I had piles and a suspected crack in my bowel. Eleven years later the intermittent bleeding was still happening though more frequently. But two years ago, I began feeling unwell and suddenly had to be rushed into hospital with agonising stomach pains. I was X-rayed and given an emergency operation. A large tumour in my colon had perforated and secondary tumours on my liver were discovered. Thankfully chemotherapy was successful in shrinking these tumours so my surgeon was able to operate and removed them. I have now completed two years of different treatment including surgery and a colostomy reversal and am still receiving on-going chemotherapy treatment at the BMI Clementine Churchill hospital, one of BUPA s leading bowel cancer hospitals in Sudbury Hill, Middlesex. Bowel cancer has been an experience but you can get through it. Having a loving and supportive family around you and your doctor s words of encouragement really help. My wife has been fantastic we have been married for 32 years and we have two grown up sons. I couldn t have got through this time without her. Things that were once important are no longer important and vice versa family comes first. I have reassessed my attitude to life My advice to others is that with the advances in technology and new drugs there is every reason to be positive even with a diagnosis. If in any doubt get yourself checked out and the earlier the better.

7 Glossary Further information and support Adjuvant therapy - other forms of therapy that are used in addition to surgery for the treatment of cancer, for example chemotherapy and radiotherapy Aetiology - the cause of a condition or disease Anaemia - a deficiency in the number of red blood cells in the body which means not enough oxygen reaches tissues and organs Anastomosis - the joining together of two ends of healthy bowel after a section has been cut out Benign - not cancerous Biopsy - removal of a small piece of tissue from the body for examination under a microscope for diagnosis Caecum - the first part of the large bowel Chemotherapy - drug treatment for cancer Colorectal - to do with the colon or rectum CT scan - the use of X-ray beams to create a 3D image of the body Histology - the examination of tissues under the microscope Ileostomy - a surgical procedure that diverts the healthy end of the small intestine (ileum) to the surface of the jargon and terms flushed out abdomen, creating a new exit route for waste materials Malignant - cancerous MRI scan - the use of a magnet to create cross-sectional images of the body. It does not use X-rays or other radiation Oncologist - a doctor who specialises in cancer care Oncology - treatment of cancer Pathologist - a doctor who specialises in the cause of a disease and the changes it produces in the body Radiologist - a doctor who interprets X-ray pictures Radiotherapy - the use of high-energy rays which can attack cancer cells Remission - a lessening of symptoms and the return to good health Stoma nurse - a nurse who is an expert at looking after people with colostomies and ileostomies Stricture - the narrowing of a portion of the bowel Ulcerative colitis - inflammation of the colon Ultrasound - the use of high-pitched sound waves to produce pictures of internal organs Beating Bowel Cancer National bowel cancer charity. Tel: Fax: info@beatingbowelcancer.org Website: Helpline is open from 8.30am-5pm Mon-Fri Bristol Cancer Help Centre Pioneer of the holistic approach to cancer care. Helpline: Tel: Fax: info@bristolcancerhelp.org Website: Helpline is open from 9.30am-5pm Mon-Fri British Colostomy Association Support, reassurance and practical information for people with a colostomy. Helpline: open 24 hours Tel: Fax: sue@bcass.org.uk Website: British Nutrition Foundation Promotes health and well being by giving scientifically based information and advice on diet and nutrition. Cannot give individual dietary advice. High Holborn House, High Holborn, London WC1V 6RQ Tel: postbox@nutrition.org.uk Website: Bupa For free A to Z health information and fact sheets visit For leading bowel cancer hospitals visit CancerBACUP Free cancer support service. 3 Bath Place, Rivington Street London EC2A 3JR Tel: Freephone: Fax: Scotland: Website: Helpline is open from 9am-7pm Mon-Fri Ileostomy and Internal Pouch Support Group Help for people with an ileostomy or an ileo-anal pouch. Freephone: info@the-ia.org.uk Website: Helpline is open from 9am-5pm Mon-Fri National Association for Colitis and Crohn's Disease (NACC) For people with Crohn s disease and Colitis. Information Line: or NACC-in-Contact Support Line: nacc@nacc.org.uk Website: The Digestive Disorders Foundation Information on a wide range of digestive disorders. ddf@digestivedisorders.org.uk Website:

8 More about Beating Bowel Cancer the charity Loud Tie 2004 and bowel cancer BUPA believes that it is vital for people who need diagnosis and treatment for bowel cancer to get the right sort of professional help as there is clinical evidence which shows that they have a better chance of survival when treated either by a specialist surgeon or a specialist team. Beating Bowel Cancer was founded in It is a national charity that exists to raise awareness of symptoms, promote early diagnosis and encourage open access to treatment choice for those affected by bowel cancer. The charity relies almost entirely upon donations and the hard work of fundraisers throughout the country. Its Loud Tie campaign takes place in January, when people are encouraged to wear wild and wacky ties, talk out loud about the disease, and raise money for the charity. Beating Bowel Cancer is also pleased to work closely with a number of generous and loyal corporate organisations that offer valuable ongoing support for its work. This year the charity would like to thank BUPA for its commitment in writing and producing this information booklet. Further information is available from 39 Crown Road, St Margarets, Twickenham TW1 3EJ Tel: Fax: info@beatingbowelcancer.org Registered Charity No It is for this reason that BUPA has created a network of 101 leading bowel cancer hospitals around the UK. At each hospital, an expert team of doctors and nurses with a mix of skills in areas including surgery, radiology and cancer care co-ordinates treatment for patients. The team ensures patients are correctly diagnosed and that they receive the most appropriate treatment and support at every stage of their care. This multi-skilled approach is in line with Government advice on the disease. It is a key focus of the detailed assessment process that all BUPA leading bowel cancer hospitals have participated in. BUPA is one of the world s largest health and care organisations and believes strongly in the importance of health and well being. It is committed to promoting good health and is proud to support Beating Bowel Cancer whose valuable work raises awareness of the symptoms of bowel cancer, promoting early diagnosis and encouraging open access to treatment choice. Importantly, the charity highlights a form of cancer that is curable if diagnosed and treated early enough. Further information is available at

9 There is a lot of scary language about bowel cancer. This booklet, published by Beating Bowel Cancer and supported by BUPA, is designed to 'lift the lid' on everything to do with the disease and explain the terminology in a way that's easy to follow. Supported by