About Bowel Cancer
2. How many people does it affect?
4. How can I minimise my risk?
5. What should I do if I have any of these symptoms?
6. I see blood in the toilet. Does this mean I have bowel cancer?
7. I thought bowel cancer was an old person’s disease.
Bowel Cancer Screening
1. What is bowel cancer screening?
3. How does bowel cancer screening help?
4. So, who should be screened?
6. I’m concerned. My father had bowel cancer.
7. Why take samples on three days?
8. How often should I be screened?
9. Do I have to change my diet or medication before taking the tests?
Accessing Screening Tests
2. I can’t get NHS screening because I’m too young. What can I do?
3. The NHS does not provide any screening in my area.
4. I went to my pharmacy and found several bowel cancer tests. Which should I use?
5. I saw one test that just had a pad to throw in the bowl. Surely this is easier and more hygienic.
6. How do I get an NIBCSP test kit?
After A Screening Test
1. I took an FOB test and it came up positive. Does this mean I have bowel cancer?
2. What kind of tests will my doctor ask me to take?
3. Do I have to go into hospital for these tests?
4. I’ve been told I do have bowel cancer and I’m very worried. What can I do?
About the NIBCSP
1. Do I have to pay for screening with the NIBCSP?
The NIBCSP Bowel Cancer Support Forum
1. What is the NIBCSP Bowel Cancer Support Forum?
2. I really don’t want to talk about this in public.
3. So why do I have to register at all?
4. What is it acceptable to post?
6. What about Private Messages?
What is bowel cancer?
A
Bowel is short for two things: small bowel and large bowel. The small bowel is another name for the small intestine. The large bowel is another name for the large intestine. So, "bowel cancer" may refer to cancer of either the small or large intestine, or both. If it refers to cancer of the large intestine, then it is the same thing as colorectal cancer.
How many people does it affect?
A
Department Of Health figures show that approximately 16,000 people die of bowel cancer every year in the UK. 1 in 5 of these is under sixty. Bowel cancer is the UK's second biggest cancer killer after lung cancer. Around one in twenty people will have bowel cancer at some stage in their lives.
Who is at risk?
A
There is no one simple answer to that but some of the known risk factors include: Being older than 50 years of age, having a close family member with bowel cancer or polyps.
Having a personal history of bowel cancer, non-cancerous polyps, and other types of cancer or inflammatory bowel diseases such as Ulcerative colitis or Crohn's disease.
How can I minimise my risk?
A
To reduce the risk of bowel cancer experts recommend the following:- 6 Participate in a regular exercise programme, don't smoke or drink alcohol excessively (no more than 3-4 drinks a week)
- 6 Increase the amount of fresh fruits and vegetables in your diet.
- 6 Decrease the amount of fat in your diet to less that 20% of total calories. Eat less red meat, fried foods and high fat dairy products such as butter, cheese and whole milk.
What should I do if I have any of these symptoms?
A
You must see your doctor immediately. Do not put off doing so for any reason
I see blood in the toilet. Does this mean I have bowel cancer?
A
Not necessarily. Sudden profuse bleeding is often caused by haemorrhoids (piles.) However please see the above and consult a doctor immediately
I thought bowel cancer was an old person’s disease.
A
It is true that most deaths from bowel cancer are in people over sixty. However, such a cancer has almost certainly been present for many years, so the statistics are misleading. Until we have widespread general screening we cannot be sure of the correct statistics, but research in screened populations makes it clear that screening should begin much younger. 20% of all deaths from bowel cancer are in people under sixty. Bowel cancer can strike at any age.
What is bowel cancer screening?
A
Bowel cancer screening is a technique of identifying people who may have bowel cancer or a precursor by testing samples of their stools for the presence of hidden (occult) blood. The method used by most large-scale screening programmes involves a guaiac faecal occult blood test (FOB.) This is the gold standard for bowel cancer screening. People are given test cards and asked to place samples of their stools on the card on three separate days. The cards are sealed, returned to a laboratory and analysed. Results are communicated by letter.
How does screening work?
A
Bowel cancer usually develops from growths called polyps or adenomas which develop inside the bowel. Initially these growths are non-malignant, however some continue to grow and in time may become cancerous. These pre-cancerous polyps and adenomas bleed can intermittently and an FOB test can detect blood in the stool which is invisible to the eye suggesting the possible presence of polyps or cancer.
How does bowel cancer screening help?
A
Studies clearly show a marked reduction in mortality from bowel cancer in screened populations. Bowel cancer is 90% curable if caught early, and only screening can do this. Bowel cancer typically does not show clinical symptoms until it is at a more advanced stage. The disease is less than 10% curable when detected late in its progress. Since bowel cancer shows few if any symptoms, screening is the only way to detect it in its early, more curable stages.
So, who should be screened?
A
The best data we have clearly states that people who are not in an elevated risk group, should begin screening around the age of forty and certainly no later than fifty. Those who are at increased risk should begin routine screening immediately.
Who is at increased risk?
A
You are considered at increased risk if you have- 6 Personal history of bowel cancer or adenomatous polyps
- 6 A strong family history of bowel cancer or polyps
- 6 A personal history of chronic inflammatory bowel disease
- 6 A member of a family with hereditary bowel cancer symptoms
I’m concerned. My father had bowel cancer.
A
See above. Even if your doctor does not advise further action, it will do no harm and possibly a great deal of good to begin routine screening through the NIBCSP.
Why take samples on three days?
A
Bleeding caused by polyps or bowel cancer can be intermittent and the blood may be in only one part of the stool, so to maximise the chance of detecting this blood samples are taken over three different days. Most bowel cancer screening programmes take samples on three separate days.
How often should I be screened?
A
Studies in the USA show that testing once every year is twice as effective at reducing mortality as screening once every two years. Therefore we recommend annual screening.
Do I have to change my diet or medication before taking the tests?
A
Eat a high fibre diet including wholemeal bread, wheat bran or nuts. This increases stool volume and helps to avoid constipation during the test period. Avoid Vitamin C intake of more than 500mg a day. You can eat fruit and vegetables but don't take Vitamin C supplements. Avoid drugs which may cause intestinal bleeding, e. g. aspirin, ibuprofen, indomethacin, naproxen.
Please see your doctor for advice before altering any prescribed medication. Avoid the application of antiseptic preparations containing iodine to the anal area.
I live in an area where screening is provided to people in my age group once every two years by the NHS. How can I get annual screening?
A
Use the NIBCSP service in the years you are not being screened by the NHS service. The NIBCSP will contact you to remind you to take another test after 12 and 24 months and you may therefore wish to only use the NIBCSP on alternate years.
I can’t get NHS screening because I’m too young. What can I do?
A
Use the NIBCSP. This is the only bowel cancer screening service available to everyone in the UK and Ireland regardless of age or location.
The NHS does not provide any screening in my area.
A
See above and use the NIBCSP screening service.
I went to my pharmacy and found several bowel cancer tests. Which should I use?
A
There is a difference between a bowel cancer self-test kit and a screening programme. In a screening programme your test is processed by trained professionals in a proper laboratory. You will receive a letter that you can take straight to your doctor and which will help him or her decide what to do next. You will be contacted again to remind you to take another test when the time comes. Self-test kits have none of these advantages and run the risk of inaccuracy due to user error. The leading UK bowel cancer charity Beating Bowel Cancer www.beatingbowelcancer.org does not recommend using self-tests. The NIBCSP is the only independent screening programme endorsed by cancer care charities.
The NIBCSP uses the Beckman-Coulter Hemoccult guaiac FOB test. This is the only faecal occult blood test clinically proven to reduce mortality due to colorectal cancer in three randomised controlled studies. No other FOB test has similarly been proven effective for screening.
I saw one test that just had a pad to throw in the bowl. Surely this is easier and more hygienic.
A
Unfortunately clinical evidence states that "throw-in-the-bowl" tests are unreliable (Pye, G et al.: "Comparison of Coloscreen Self-Test and hemoccult Fecal Occult Blood Tests in the Detection of Colorectal Cancer in symptomatic Patient," Br. J. Surg, 77:630-631, 1990). We do not recommend them. Most properly constituted screening programmes such as the NHS and the NIBCSP, use laboratory based FOB tests.
How do I get an NIBCSP test kit?
A
You can order a test kit online at http://www.pocl.co.uk/ or by telephoning 0845 603 5709.
The NIBCSP test is available through pharmacies as well as on-line. If your pharmacist does not stock it and you would rather not buy on-line or by telephone, ask him to get one for you. The NIBCSP is the only properly constituted independent screening programme generally available to everyone in the whole of the UK and Ireland.
I took an FOB test and it came up positive. Does this mean I have bowel cancer?
A
A positive result from a faecal occult blood test does not necessarily mean that you have bowel cancer. However, the presence of occult (hidden) blood in your stool samples does require further investigation. A positive result may also alert you to other conditions in the bowel which are not cancerous but which may still require investigation and/or further treatment. On receipt of a positive result it is essential that you see your doctor who will then decide on the appropriate action to take.
What kind of tests will my doctor ask me to take?
A
In the first instance your doctor may perform a manual examination of your rectum. However your doctor should refer you for further examination, for example sigmoidoscopy, (a procedure used to examine the inner lining of the lower bowel for polyps, cancer and other diseases), or a colonoscopy, (a procedure performed to examine the entire colon and rectum).
See the following links for more detailed explanations
http://www.patient.co.uk/showdoc/27000300/
http://www.wolfsonendoscopy.org.uk/flexible-sigmoidoscopy-information.html
Do I have to go into hospital for these tests?
A
Usually they are carried out on an out-patient basis. However your doctor will take your general health and age into account.
I’ve been told I do have bowel cancer and I’m very worried. What can I do?
A
This forum cannot provide diagnostic or remedial care of any type. However there are people on the forum who are sufferers of the disease and there are also carers and health professionals. Talking often helps. We can help explain some of the technical terms and help you to get a sense of proportion about your illness. The UK Charity Beating Bowel Cancer organises a patient voice group see: http://www.beatingbowelcancer.org/ for more details. In addition there are social support services which your doctor should put you in touch with. The Macmillan Nurses provide a wonderful care and counselling service for all cancer sufferers.
What about treatment?
A
This depends on the individual case and the maturity and extent of the cancer. In its earliest stages a polypectomy may be performed, a ploypectomy is the removal of polyps. It can be done during colonoscopy. As the disease progresses, more invasive procedures may be required. Treatment can include surgery, chemotherapy and radiotherapy . See http://www.beatingbowelcancer.org/ for more details.
Do I have to pay for screening with the NIBCSP?
A
The NIBCSP test costs £17.98 including VAT of which £1 is presently donated to organisations or individuals active in cancer research.
What do I get?
A
You will receive a test kit including a guaiac FOB test card, a personal details card, a freepost return envelope and full instructions. Once you have taken the samples as directed, return the FOB test card along with the personal details card to the laboratory which will process the test. Your results will be communicated by letter and the NIBCSP will contact you when it is time to take another screening test.
What is the NIBCSP Bowel Cancer Support Forum?
A
This is an interactive forum where anyone can discuss their experience with or concerns about bowel cancer and bowel cancer screening in all its stages.
I really don’t want to talk about this in public.
A
You are not alone in this. Bowel cancer is a very delicate topic. People don't like to talk about it. That is why we suggest that when you join the forum you choose a user-name that is not your own. No-one need ever know who you really are.
So why do I have to register at all?
A
Anyone is welcome to read the discussions but in order to take part actively you must first register. We took the decision to do this so that we could more closely monitor the discussion and be sure that anyone abusing the forum could be excluded. We believe this is in the best interests of everyone. Your registration details are confidential and as you will see we do not even take your address or real name.
What is it acceptable to post?
A
You may post on any topic relating to the subject of bowel cancer at any stage. We encourage lively and informed debate.
What is not acceptable?
A
You may not use rude, intemperate or provocative language. You may not insult other posters. You may not under any circumstances post abusive or defamatory messages. You may not "spam" the forum. You may not "flame" other users. "Trolling" of any kind is not allowed and "trolls" will be banned.Please do not post off-topic comments. There is a Private Message facility which you can use to discuss off-topic subjects with other users.
What about Private Messages?
A
The Private Message facility is there for users to discuss things they would rather not in public, say for example where their real identities may be revealed, or things that are off-topic for the forum. The same rules apply in Private Messages as on the open forum. We do not monitor Private Messages, for obvious reasons, but if we receive a complaint that a user has been abusing the Private Message system in any way at all, we will investigate and if true terminate that user's account and ban him or her from using the forum in the future.
Who is in charge here?
A
Moderators are appointed by the Director of the NIBCSP. They are identified by the title "Moderator." Moderator's decisions on any subject are final and may not be disputed.
What happens to people who break the rules?
A
This is a caring forum and we realise that people sometimes get very passionate. We also realise that sometimes people say things they later regret. Generally the Moderators will be sympathetic and helpful but ultimately persistent rule-breakers may have their account terminated and be banned from posting to the forum.
Who is responsible for what is said?
A
The contributors. Although this is a moderated forum and we will take reasonable steps to ensure that material contrary to our rules is removed, we are not responsible or liable in any way for the content of posts.