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Bowel cancer in the family

Being diagnosed with colorectal or bowel cancer can be a worrying time for patients and their families, especially where there is a genetic cause.

A diagnosis of colorectal, or bowel cancer, is devastating to all family members.  Familial or hereditary types amount to just 8% of all bowel cancers.  Although the risks increase with age, 15% of those diagnosed are under the age of 60.1

Bowel cancer is the third most common form of cancer and the second biggest cause of cancer deaths.1 Every year in the UK 39,000people are diagnosed and there are approximately 18,000 deaths annually. 

One person's experience of living with bowel cancer is highlighted in the case study. 

Types of bowel cancer

The large intestine, or bowel, has two sections; the colon and the rectum.

Bowel cancer usually begins with a polyp in the colon that for some reason turns malignant and starts to bleed.Most bowel cancers arise from damaged genes within adenomatous polyps. These genes are known as KRAS and BRAF. The former cells are more likely to develop changes first. A BRAF test should be performed if the KRAS test shows wild-type KRAS changes. Around 12-18% of all colorectal cancers will have the BRAF gene changes (see Glossary).

One form of inherited predisposition is hereditary non-polyposis colorectal cancer (HNPCC) or Lynch syndrome. There are certain criteria for identifying families at risk of this form:

- Three or more relatives with HNPCC related cancer.

- At least two consecutive generations affected.

- At least one bowel or related cancer diagnosed before the age of 50 .1

The other inherited form is familial adenomatous polyposis (FAP). 

 Diagnosis, treatment and prognosis.

Bowel cancer is diagnosed by examining the bowel wall with either a sigmoidscope or a colonoscope. Common symptoms are persistent diarrhoea, colicky pains and pain on defaecation. Another symptom may be a feeling of not emptying the bowel after passing a stool. This is more likely to be felt if the tumour is low down in the rectum. Other general symptoms are tiredness, anaemia and weight loss.  

The NHS Bowel Cancer Screening Programme (NHSBCSP) has been operating across England since 2006 and can predict risk of bowel cancer. Initially the test was targeted at those aged 60-70 years, but since 2009 it has included those aged up to 74 years. 

Unsolicited tests are a new public health strategy. The test is sent biannually, with three separate faecal smear samples required for analysis. Occult (hidden) blood can be detected before any symptoms of blood loss. Tiny amounts of blood can of course be due to other problems, such as haemorrhoids, a harmless polyp or fissure, but cancerous tissue, which grows abnormally, has a propensity to bleed.

A positive test, the incidence at present being 2%, only indicates a higher risk of cancer; it is a screening and not a diagnostic tool. It indicates whether the patient requires further investigation. Despite its effectiveness, take up is low - only 51% for men and 56% for women.2 

If detected early, then surgery may be all that is necessary. Later stages will require more aggressive treatments of radiotherapy and chemotherapy. Tumour, node, metastases (TNM) staging is taking over from the traditional Dukes system and is used internationally. A stoma isgenerally necessary during treatment but wherever possible the surgeon will resect the bowel to avoid a permanent colostomy. 

The National Institute for Health and Clinical Excellence (NICE) has guidelines in place regarding the most cost-effective combination of therapies for treatment.3

Support needed for the family from a community nurse

A person who has undergone treatment for bowel cancer will need to regain their appetite, so advice about suitable foods will be helpful. The treatment may result in some degree of faecal incontinence, so advice and exercises to regain muscle tone should be offered. Again, different foods and medicines will affect the firmness of the stool. Community nurses need nutritional knowledge to help those who have undergone treatment.

The nurse should encourage those in the family in the relevant age groups to take up screening services. The nurse can explain that bowel cancer is treatable and that if found early the better the prognosis.

Information is vital. A recent RCN study found that the public most values skill, knowledge and confidence from community nurses.4 Confidence is gained when the nurse is well informed and his or her knowledge is current. The public health role of the community nurse should not be overlooked. Members of the public should be encouraged to lead healthy lifestyles, including exercise and healthy foods; the nurse can reinforce this during contacts in the home and clinic setting.

Possible future developments

It is possible that screening eligibility will broaden to cover 55-74 years.  Work has been done looking at possible benefits of aspirin use, but because of bleeding risks from overuse of aspirin, it appears that the risks outweigh any possible benefit.5 

About 30 centres are regularly using colorectal stents, which occlude the bowel wall, thus avoiding the need for a stoma. This procedure may be rolled out following positive evaluations.6

Beating Bowel Cancer has recently launched a bowel cancer map, providing local data about this cancer across the UK.7

NICE(2004)3  guidelines recommend that there should be colorectal multidisciplinary treatment centres across the country. The latest NICE guideline on 'Diagnosis and Management of Colorectal Cancer' is due for publication soon.

Research is looking at level of uptake across different ethnic groups8,9  highlighting the fact that some people are reluctant to accept the screening programme for cultural and religious reasons. It is likely that more research will be undertaken to determine the reasons for screening programmes not being accepted.

The evidence is now convincing that lack of fibre and inclusion of red meat in the diet raises the risk of bowel cancer.10  A 43% reduction in incidence could be achieved through lifestyle and dietary changes.

Finally, a team from the Open University are working on an early warning urine test. This test would screen for early signs of DNA damage from red meat intake.


Bowel habit is a sensitive issue to discuss; however, 1 in 18 of us will experience bowel cancer at some stage in our lives. We need to understand the signs and symptoms, think about our family history and take up screening services. The evidence is clear though; screening reduces the risk of dying by 16%11  and if detected early, there is over a 90% chance of survival.12

Case study: one person's story

“In 2004 I begun a journey which everyone hopes they will never have to undertake.  After having a sigmoidoscopy I was told that there was a polyp in my descending colon that was malignant. I am sure you canimagine how that affected me, especially as I had gone to this appointment on my own, believing this was just a routine investigation.

I came home and immediately turned to the internet where I only found websites which were very depressing and painted an extremely bleak picture.  Luckily, after a few days I found the Beating Bowel Cancer site,,which provided me with all the facts in a way I could understand, and gave me some hope of recovery.

After undergoing a CT Scan, x-ray and blood test I had open surgery to remove about 10 inches of the bowel. It was a shock to me when I realised I had been given an ileostomy, which the surgeon thought she could avoid. I recovered quickly and returned home after 8 days. However I struggled with the ileostomy and found this very difficult to cope with, both physically and mentally. The stoma nurses were very kind but when I experienced problems with it I could not get any assistance if this happened out of hours or at a weekend.  There seems to be a lack of experts in this field able to give patients 24/7 help and advice.

When the bowel had had time to heal, about 10 weeks, I was readmitted to have the ileostomy reversed and this operation was probably worse than the first one.  Due to adhesions, the surgeon had to reopen the original site and as this was unexpected, there had been little provision for pain relief. Once the bowel started to work, it became very difficult to manage and at one stage, I remember I wished I still had the stoma.  This was probably the lowest point I reached during my treatment. I was given very little information about foods to eat or to avoid.  There seems a lack of communication between the different medical professionals, which is detrimental to patients.  This is not intentional I am sure, but there needs to be something in place similar to a MDT so that the different teams can work through any problems the patient may have.

As I had about 10 inches of bowel removed it has changed my bowel habit completely.  I must be careful what I eat which can be difficult when on holiday or eating out.  This will now be a way of life for me but it is a small price to pay for saving my life.  Everything I do in my life centres around toilet facilities and so holidays and days out have to be carefully planned.

I do not think there is enough support given to carers of bowel cancer patients as I found my family were too worried about asking me questions in case it upset me, but in some ways the family suffers more than the patient does. I know it affected my adult children immensely and perhaps they have never recovered from the shock when they thought 'Mum' was not going to be with them for long.

I have now fully recovered from my illness but my whole outlook on life is very different. Most trivial things now just go over my head and I try to enjoy simple things in my life.  Since coming through this journey I have worked with the charity Beating Bowel Cancer as a volunteer.  The charity offer 'Health in the Workplace 'presentations to large organisations. This commenced when it become obvious people being affected were much younger and perhaps diagnosed during their working lives.

The important message is to spot the symptoms early and you can be cured, as I have been.”



1.    Beating Bowel Cancer.Bowel Cancer - Prevalence and Detection. 2010. Available at:

2.    Wilkins, D. Men and bowel cancer: the facts. Nursing in Practice. 2011;60:57-59.

3.    National Institute for Health and Clinical Excellence. Improving Outcomes in Colorectal Cancer. Manual Update. 2004. Available at:

4.    Royal College of Nursing. Community Nursing - Transforming Healthcare. 2011. Available at:

5.    Gordon, JA. Aspirin use as treatment in colorectal cancer. 2009. Available at:

6.    Cancer Research UK, Jim Hill Overview. Available at:

7.    Bowel Cancer map. Available at

8.    ScHARR, University of Sheffield. Report for the NHS Bowel Cancer Screening Programme. 2001.

9.    UK CRC Evaluation (Ethnicity) Team. (July  2003)Ethnicity: UK Colorectal Cancer Screening Pilot - Final Report. University of Warwick

10. Norat et al. WCRF/AICR Systematic Literature Review Continuous Update Project Report.  The Associations between food, nutrition and physical activity and the risk of colorectal cancer. 2010. Available at:

11. Cochrane Database of Systematic Reviews (2006)

12.  Colorectal Cancer Research UK (2005) Cancer Statistics.