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Small bowel cancer

Cancers in the small bowel are rare. Around 1,500 people in the UK are diagnosed with small bowel cancer each year.

The small bowel is between the stomach and the large bowel (colon).

The main symptoms of small bowel cancer include:

  • cramping pain in the tummy (abdominal pain)
  • weight loss
  • nausea and vomiting
  • tiredness caused by a low number of red blood cells (anaemia) due to blood loss
  • dark or black poo due to bleeding in the small bowel
  • diarrhoea.

These symptoms may be caused by many things other than small bowel cancer. But you should always get symptoms checked by your doctor.

You will need tests to diagnose small bowel cancer. These may include endoscopies, CT scans or MRI scans. Doctors may also need to take samples (biopsies) from the affected area.

If you are diagnosed with small bowel cancer, surgery is the main treatment used. Some people may need chemotherapy, which is sometimes given alongside radiotherapy.

What is small bowel cancer?

Cancers in the small bowel are rare. Around 1,500 people in the UK are diagnosed with small bowel cancer each year.

We hope this information answers some of your questions. If you have any further questions, you can ask your doctor or nurse at the hospital where you are having your treatment.

The small bowel

The small bowel is part of the digestive system. It is between the stomach and the large bowel (colon). The small bowel is around 5 metres long. It folds many times to fit inside the tummy (abdomen). It breaks down food. This allows vitamins, minerals and nutrients to be absorbed into the body.

The small bowel is divided into three main parts:

  • the duodenum – the top section that is joined to the stomach
  • the jejunum – the middle section
  • the ileum – the lower section that is joined to the large bowel.

Around half of all small bowel cancers start in the duodenum.

The position and sections of the small bowel
The position and sections of the small bowel

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Types of small bowel cancer

There are four main types of small bowel cancer. They are named after the cells where they develop:

Adenocarcinoma

These are the most common type of small bowel cancer. They start in the lining of the small bowel. They are usually in the duodenum.

Sarcoma

Sarcomas develop in the supportive tissues of the body. There are different types of sarcoma. The most common is a gastrointestinal stromal tumour (GIST). A GIST can develop in any part of the small bowel.

Other types include leiomyosarcomas. These are usually in the muscle wall of the small bowel, usually in the ileum.

Neuroendocrine (carcinoid) tumours

Neuroendocrine tumours start from cells that make hormones inside the small bowel. They usually start in the ileum. Sometimes they are in the appendix.

Lymphomas

Lymphomas start in the lymph tissue of the small bowel. The lymph tissue is part of the body’s immune system. Small bowel lymphomas are usually non-Hodgkin lymphomas (NHLs).

Small bowel lymphomas are most common in the jejunum or ileum.

Secondary cancer in the small bowel

Occasionally, a small bowel cancer may be a secondary cancer. This means it has spread from a cancer that started somewhere else in the body (primary cancer). The most common places for secondary cancers to spread from are the skin (melanoma), lung, breast and large bowel (colon).

The information on this page is mainly about adenocarcinoma of the small bowel. For more information on other types of small bowel cancer, contact our cancer information nurses on the Macmillan support line on 0800 808 00 00, Monday to Friday, 9am to 8pm.


Causes and risk factors of small bowel cancer

We do not know what causes most small bowel cancers, but there is research being done to try to find out more.

Some people with non-cancerous bowel conditions may have a higher risk of developing small bowel cancer. These conditions include:

  • Crohn’s disease
  • coeliac disease
  • Peutz-Jegher’s syndrome.

People who have had a cancer of the colon or rectum have an increased risk of developing small bowel cancer.

People also have a higher risk if they have:

  • Lynch syndrome, also called hereditary non-polyposis colorectal cancer (HNPCC)
  • familial adenomatous polyposis (FAP).

Like all cancers, small bowel cancer is not infectious and cannot be passed on to other people.


Signs and symptoms of small bowel cancer

The main symptoms of small bowel cancer include:

  • cramping pain in the tummy (abdominal pain)
  • weight loss
  • nausea and vomiting
  • tiredness, which is caused by a low number of red blood cells (anaemia) due to blood loss
  • dark or black poo, due to bleeding in the small bowel
  • diarrhoea.

These symptoms may be caused by many things other than small bowel cancer. But you should always get symptoms checked by your doctor if you are unsure or if they are severe, get worse or last for a few weeks.

Sometimes the cancer can cause a blockage (obstruction) in the bowel. This may be a complete or a partial blockage. The symptoms of this are:

  • vomiting
  • constipation
  • pain in the tummy (abdomen)
  • feeling bloated.

Rarely, a blockage in the small bowel can cause the bowel to tear. This is a serious condition that usually happens suddenly and needs to be treated with surgery. The symptoms include:

  • severe pain
  • feeling faint or dizzy
  • abdominal swelling.

If you have any of the symptoms of a blockage or a tear in the bowel, you should go to your nearest emergency department (A&E).


How small bowel cancer is diagnosed

Small bowel cancer can be diagnosed in different ways. You may see your GP about symptoms such as pain, weight loss or tiredness caused by anaemia. They will examine you and arrange some blood tests or x-rays. Your GP can then refer you to a specialist at the hospital for more tests and treatment if necessary.

Other people are diagnosed with small bowel cancer after being admitted to hospital with more severe symptoms. These may include pain caused by a blockage or a tear in the bowel.

At the hospital, a specialist doctor will examine you and take blood samples. This is to check for anaemia and to check your liver is working properly. They may ask you for a sample of your poo. The hospital will test it for blood. You may also have some of the following tests.

Endoscopy (gastroscopy)

An endoscope is a thin, flexible tube used to look inside the bowel. The tube has a light and a camera at the end. It is passed into the body to help doctors see inside.

You have this test in the hospital outpatient department or on a ward. You can usually go home on the same day.

You will be asked to lie on your side and you will have a mild sedative to help you relax. The tube can be passed through the mouth and stomach to look inside the duodenum. Or it can be passed through the back passage (rectum) and large bowel to look inside the lower part of the ileum. Your doctor will explain the type of endoscopy you will have.

During the endoscopy, the doctor may take a small sample of tissue, called a biopsy. This will then be looked at under a microscope by a pathologist (someone who specialises in looking at cells). They will check the tissue for cancer cells.

Endoscopies cannot reach some areas of the jejunum or the ileum. To diagnose cancer in these areas, your doctor may do an enteroscopy or capsule endoscopy.

Enteroscopy

You have this test in the hospital outpatient department. An enteroscopy is very similar to an endoscopy, but the tube can reach further into the small bowel than an endoscopy.

Some people may find having an enteroscopy uncomfortable. But this should only last for a short time. You will be given some painkillers to help.

Capsule endoscopy

This test takes pictures of the inside of the digestive tract, including all of the small bowel.

You swallow a capsule that is about the size of a large pill. Inside the capsule, there is a very small camera, a battery, a light and a transmitter. The camera takes multiple pictures per second for several hours. The pictures are sent to a small recording device. This is attached to a belt you can wear around your waist.

You have to follow a special diet the day before and on the day of the test. Your nurse or doctor will tell you more about this. You can keep doing your normal activities while the camera is taking pictures.

About 8 hours after swallowing the capsule, you will need to return the recording device to the hospital. The pictures are put on to a computer and your doctor will look at them. The capsule is usually passed out of your back passage (rectum) naturally when you go to the toilet.

If you are concerned the capsule has not passed out, contact your doctor. They can arrange an x-ray to check.

CT scan

A CT (computerised tomography) scan uses x-rays to build a three-dimensional (3D) picture of the inside of the body. You may be given either a drink or injection of dye. This is to make certain areas of the body show up more clearly. This scan takes about 30 minutes and is painless. We have more detailed information about having a CT scan.

Having a CT scan
Having a CT scan

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MRI scan of the small bowel

This scan uses magnetism to build up a detailed picture of areas of the body. Before the scan, some people have a thin tube put into a vein in the arm or hand (cannula).

You may also have:

  • an injection of dye into the cannula
  • an injection of muscle relaxant into the cannula
  • a special drink that helps the bowel expand.

These will help make the picture clearer.

This test is painless and will take about 30 minutes. We have more detailed information about having an MRI scan.

Other tests

Sometimes it is difficult to get a clear picture of the small bowel, and biopsies cannot always be taken. If this happens, the diagnosis may be made during an operation.

Waiting for test results

Waiting for test results can be a difficult time. It may take from a few days to a couple of weeks for the results of your tests to be ready. You may find it helpful to talk with your partner, family or a close friend.

Your specialist nurse can also provide support. You can also talk things over with one of our cancer support specialists on 0808 808 00 00.

I really wasn't expecting to be told I had cancer after an endoscopy, as it’s very rare. My feelings were of shock and then fear.

Lynda

Waiting for results is always an anxious time and it can be hard to stay calm. Pretty much everyone feels like that. Try and keep as busy as you can.

Suze


Staging of small bowel cancer

The stage of a cancer describes its size and whether it has spread. Knowing the stage of the cancer helps doctors decide on the best treatment for you.

Cancer can spread in the body, either in the bloodstream or through the lymphatic system. The lymphatic system helps protect us from infection and disease. It is made up of fine tubes called lymphatic vessels that connect to groups of lymph nodes throughout the body. Your doctors will usually check the lymph nodes close to the small bowel to help find the stage of the cancer.

There are different staging systems for small bowel cancer. The staging system used by your doctor will depend on the type of small bowel cancer you have. The TNM staging system is the most commonly used system. It is used for adenocarcinoma of the small bowel.

TNM staging system

T describes how far the tumour has grown into the wall of the small bowel, and whether it has grown into nearby tissues or organs.

N describes whether the cancer has spread to the lymph nodes.

M describes whether the cancer has spread to another part of the body (secondary or metastatic cancer).

T – Tumour

The small bowel wall is made up of layers of different tissues.

  • T1 means the tumour is only in the inner layer of the small bowel, called the submucosa.
  • T2 means the tumour has grown into the muscle layer of the small bowel wall but no further.
  • T3 means the tumour has grown through the muscle layer into the layer before the outer lining of the small bowel wall (called the subserosa), but no further.
  • T4 means the tumour has grown into the outer layer of the bowel wall (called the serosa). It may also be growing into the surrounding organs, such as the large bowel, bladder, stomach or pancreas.

N – Nodes

  • N0 means no lymph nodes contain cancer cells.
  • N1 means there are cancer cells in 1 to 3 nearby lymph nodes.
  • N2 means there are cancer cells in 4 or more nearby lymph nodes.

M – Metastases

  • M0 means the cancer has not spread to other organs.
  • M1 means the cancer has spread to other organs, such as the liver or lungs.


Treatment for small bowel cancer

Treating adenocarcinoma of the small bowel depends on a number of things, including:

  • your general health
  • the position and size of the cancer
  • whether it has spread to other areas of the body.

Surgery for small bowel cancer

Surgery is the main treatment for small bowel cancer. Your doctors will explain the aim of the operation to you before your surgery. They can answer any questions you have. Sometimes the surgeon may not know exactly what they will do until they start the operation.

Removing the cancer

You may have surgery to remove the part of the small bowel that has cancer. The two open ends of the bowel are then joined together. The join is known as an anastomosis. Surgery is also used if the bowel becomes blocked.

The type of operation you have depends on:

  • the size and position of the cancer
  • whether it has spread to any surrounding areas.

During the operation, the surgeon will usually remove all the cancer and some surrounding healthy tissue. But if the cancer is affecting tissue or organs nearby, the surgeon may also need to remove part of the stomach, part of the colon, the gall bladder or some lymph nodes.

Stomas

Sometimes during the operation, the surgeon makes an opening through the tummy (abdominal) wall. This lets the bowel join on to the surface of the tummy. It is called a stoma. They may do this if the bowel cannot be joined together, or to give the bowel time to heal. Your surgeon will be able to tell you if you need a stoma.

A stoma is round or oval, and it looks pink and moist. It has no nerve supply, so it does not hurt. A stoma made using the small bowel (ileum) is called an ileostomy.

Poo will no longer pass out of the rectum and anus in the usual way. Instead it will pass out of the stoma, into a disposable bag that is worn over the stoma.

The stoma is usually temporary. People with a temporary stoma will have a second, smaller operation a few months later to close the stoma and re-join the bowel. This operation is called a stoma reversal.

The stoma care nurse at the hospital will help you look after the stoma for the first few days. They can give you support and information on caring for your stoma when you go home. Our cancer support specialists can give you more information about having an ileostomy.

Bypass surgery

If the cancer is large and has caused a narrowing or blockage in the small bowel, it may cause tummy pain and vomiting. This needs to be treated urgently.

Surgeons can sometimes bypass the cancer using an expandable metal tube to open the small bowel. The cancer can sometimes be removed at a later date. But even if it is not possible to completely remove the cancer, bypassing the blocked area can help relieve the symptoms.

After your operation

After a major operation, you may have to stay in an intensive-care ward for a couple of days. Then you can move back to a general ward.

When part of the small bowel has been removed or bypassed, you may need to have a special diet, supplements or medicines. This will depend on the type of surgery. This may help you digest and absorb food. Your doctor or nurse will explain this to you.

Chemotherapy for small bowel cancer

Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. Chemotherapy may sometimes be used to treat cancer of the small bowel, either in combination with radiotherapy or surgery, or on its own.

The drugs most commonly used to treat small bowel cancer are:

Chemotherapy is not always suitable. Doctors are still researching how effective it is at treating small bowel cancer.

If you have lymphoma in the small bowel, you may be treated with chemotherapy. The type of drugs you have will depend on the type of non-Hodgkin lymphoma you have.

The surgery went as well as it could, and a recent scan looks okay. I am beginning to feel calmer and to enjoy my life again.

Lynda

Ask your oncology team lots of questions about how the treatment will help. You can also ask what they can do to help make it more bearable.

Linda


Follow-up

After your treatment has finished, you will have regular check-ups, tests and scans. These appointments are a good opportunity to talk to your doctor about any worries or problems you have.

Many people find they get very anxious before appointments. This is natural. It can help to get support from family, friends, your specialist nurse or a support organisation. You can also talk things over with one of our cancer support specialists on 0808 808 00 00, Monday to Friday, 9am to 8pm.


Research – clinical trials

Cancer research trials are carried out to try to find new and better treatments for cancer. Trials that are carried out on patients are known as clinical trials.

Trials are the only reliable way to find out if a different type of surgery, chemotherapy, hormone therapy, radiotherapy or other treatment is better than what is available already.

You may be asked to take part in a research trial. If you choose to take part, you will be carefully monitored during and after the study. If you decide not to take part, your decision will be respected and you won’t have to give a reason. There will be no change in the way you’re treated by the hospital staff, and you’ll be offered the standard treatment for your situation.


Your feelings

During your diagnosis and treatment, you are likely to experience a number of different emotions. These can include shock, disbelief, guilt, fear, anxiety and anger. It is common to feel overwhelmed by different emotions. These feelings are natural. Partners, family and friends may also have some of the same feelings.

You might have different reactions to the ones we have mentioned. There is no right or wrong way to feel. Everyone has their own way of coping with difficult situations, and help is available if you need it. Some people find it helpful to talk to family or friends, while others prefer to ask for help from people outside their situation. Our cancer support specialists on 0808 808 00 00 can give you more information about where to get help and support.