Gastrointestinal Lymphoma

Overview

Gastrointestinal lymphoma is a type of cancer that starts in the digestive tract — usually the stomach, small bowel, or colon. It begins in lymphocytes, which are white blood cells that are part of the body's immune (defence) system. These cells normally help fight infection, but in lymphoma they grow out of control and form a lump or spread along the gut wall. The digestive tract is one of the more common places outside the lymph nodes where lymphoma can start. There are several different types, and doctors plan treatment based on which type you have.

It is uncommon. Lymphoma overall is not rare, but gastrointestinal lymphoma makes up only a small share of cancers of the stomach and bowel. Most stomach and bowel cancers are a different type called adenocarcinoma, so doctors check carefully to tell them apart.

It mostly affects adults, often in their 50s to 70s, and is rare in children. Some types are more likely in people with long-standing H. pylori infection of the stomach, in people with weakened immune systems, and in people with coeliac disease (a reaction to gluten that damages the bowel).

Symptoms

Common symptoms

• Ongoing indigestion, heartburn, or a burning or gnawing pain in the upper tummy
• Feeling full very quickly when eating, or bloating after small meals
• Nausea or vomiting
• Losing weight without trying
• Tiredness or breathlessness, which can be a sign of low iron (anaemia)
• A change in bowel habits, such as looser stools or constipation
• Blood in the stool, or stools that look black and tarry
• Night sweats or unexplained fevers
• A lump or swelling in the tummy

Symptoms in children

• Tummy pain that keeps coming back
• Vomiting, sometimes bile-stained
• Poor appetite and slower-than-expected growth
• Tiredness or looking pale
• A swollen or tender tummy
• Note: gastrointestinal lymphoma is very rare in children, and most tummy symptoms in children have much more common causes.

Symptoms in older adults

• Anaemia found on a routine blood test, sometimes with few other symptoms
• Increasing tiredness, weakness, or breathlessness on effort
• Poor appetite and gradual weight loss
• Symptoms that are put down to 'just indigestion' for a long time before being checked
• Confusion or dizziness if anaemia becomes marked

Causes

Main causes

• Lymphoma happens when lymphocytes (immune cells) develop changes in their genetic material and start to grow and divide out of control. The exact reason this happens in any one person is usually unknown.
• Long-term infection with Helicobacter pylori (a common bacterium that lives in the stomach) is strongly linked to one slow-growing type of stomach lymphoma.
• Some lymphomas are linked to long-term immune stimulation or a weakened immune system.
• A type that affects the small bowel is linked to long-standing coeliac disease.
• A virus called Epstein-Barr virus is linked to some rare types, mostly in people with weakened immunity.

Risk factors

• Older age — most cases are in adults over 50
• Long-standing H. pylori infection of the stomach
• A weakened immune system, for example from HIV, immune-suppressing medicines after an organ transplant, or some inherited immune conditions
• Coeliac disease that has been present for many years
• Some autoimmune conditions, such as certain thyroid or joint conditions
• Previous radiotherapy or chemotherapy for another cancer (a small increase in risk)
• It is not caused by anything you did or did not do, and it is not contagious.

When to see a doctor

See a doctor urgently if:

• Vomiting blood or coffee-ground material, or black tarry stools — this needs emergency care
• Severe or rapidly worsening tummy pain
• A new, firm lump in the abdomen
• Unexplained weight loss with night sweats or fevers
• Being unable to swallow, or vomiting soon after eating
• Feeling faint or very breathless

Book a routine appointment if:

• Indigestion or tummy pain that keeps coming back over weeks, especially if it wakes you at night
• A change in bowel habit lasting more than a few weeks
• Feeling full very quickly, or losing your appetite
• Tiredness that does not improve, or looking pale
• Any symptom that is new for you and is not settling — it is always reasonable to get it checked

Diagnosis

Doctors usually start with a conversation about your symptoms, an examination, and blood tests. If there is a reason to look inside the gut, you will be offered a camera test (endoscopy for the stomach, or colonoscopy for the bowel). Small tissue samples (biopsies) are taken during that test, and a specialist looking at the cells under a microscope can confirm whether it is lymphoma and which type. Further scans then show how far it has spread, which guides treatment.

Tests that may be done

• Blood tests, including a full blood count to check for anaemia and tests of liver and kidney function
• A stool test, including one to check for hidden blood
• A test for H. pylori infection — this can be a breath test, stool test, or a sample taken during endoscopy
• Endoscopy (a thin flexible tube with a camera passed through the mouth) with biopsy
• Colonoscopy (a camera test of the bowel) with biopsy if the bowel is involved
• CT scan or PET-CT scan to see the whole body and check the extent of the disease
• A bone marrow sample, in some cases, to check whether the marrow is affected
• An ultrasound scan of the abdomen in some situations
• Heart and kidney checks before certain treatments

What to expect at your appointment

The tests happen in stages, and waiting for results can feel stressful. Endoscopy and colonoscopy are usually done with sedation or a light anaesthetic, so they are not painful. Biopsy results often take one to two weeks because the tissue needs careful specialist review. Once the type and stage are known, your team will explain the plan in a meeting, and you are welcome to bring someone with you and to write questions down in advance.

Treatment

Treatment depends on the exact type of lymphoma, where it is, how fast it is growing, your age, and your general health. Some slow-growing stomach lymphomas that are linked to H. pylori can respond to treatment that clears the infection, with close monitoring afterwards. Faster-growing types are usually treated with medicines that travel through the whole body, sometimes combined with radiotherapy or surgery. The aim is often to cure, and for many people treatment works well.

Self-care at home

• Keep a simple symptom diary to help you describe changes to your team
• Eat small, frequent meals if you feel full quickly, and sip fluids through the day
• Ask your team before starting any new supplement or herbal remedy, as some interact with treatment
• Keep up gentle activity such as short walks, which helps with tiredness and mood
• Ask your doctor about vaccines and about avoiding live vaccines during treatment
• Tell your team straight away about fevers, shivering, or feeling suddenly unwell during treatment — these need same-day review

Medical treatments

Doctors may use several approaches, alone or together. These include medicines given into a vein or as tablets that target the abnormal lymphocytes; treatments that use the body's own immune system to attack cancer cells; radiotherapy aimed at the affected part of the gut; and treatment to clear H. pylori infection when it is driving a slow-growing stomach lymphoma. Some people are offered newer targeted treatments that block specific signals inside cancer cells. Your team will explain the choices, the likely benefits, and the side effects in your own case. Always ask your doctor or pharmacist rather than starting, stopping, or changing anything yourself.

When is surgery considered?

Surgery is not usually the main treatment for lymphoma, because lymphoma is a disease of the whole immune system and responds to medicines. It may still be needed in specific situations — for example, to remove a small localised tumour, to treat a blockage or a hole in the gut, or to control heavy bleeding. Your surgical team will explain the risks and benefits if this applies to you.

Living with this condition

Life during and after treatment often settles into a rhythm of appointments, rest, and good days mixed with harder ones. Fatigue is common and can last for weeks or months — plan important activities for when your energy is best, and accept help with shopping, cooking, and travel. Keep a list of your medicines and your team's contact details with you. Many people find it helpful to have one notebook or phone note for questions, appointment dates, and symptom changes.

Lifestyle tips

• Eat regularly and choose foods that are easy to digest when your appetite is low; a dietitian can give practical, personalised advice
• Stay gently active — short daily walks support energy, mood, and recovery
• Avoid smoking and limit alcohol, which helps your body cope with treatment
• Wash hands well and avoid close contact with people who have infections while your immune system is recovering
• Keep to any monitoring appointments even when you feel well — follow-up is how problems are caught early
• Ask your team about travel, work, and insurance before making big plans

Diet and exercise

There is no special 'lymphoma diet', but eating well helps you tolerate treatment and recover. Aim for regular small meals with protein at each one — eggs, beans, fish, chicken, dairy, or plant proteins — plus fruit and vegetables as tolerated. If you feel full quickly, eat little and often rather than large meals. If you have coeliac disease, a strict gluten-free diet is important. Gentle exercise such as walking, light cycling, or stretching is usually safe and helpful; ask your team first if you are having treatment, have low blood counts, or feel unsteady, and build up slowly.

Mental health and emotional wellbeing

A cancer diagnosis can bring shock, fear, anger, and low mood, and waiting for results is often the hardest part. These feelings are normal and they usually ease as a plan becomes clear. Tell your team if you feel persistently low, anxious, or unable to sleep — talking therapies and support groups help many people. If you ever have thoughts of harming yourself or feel you cannot cope, please reach out for crisis support straight away: contact your local emergency number, or a local crisis line or emergency mental health service, and tell someone you trust how you are feeling. You do not have to manage alone.

Prevention

Most cases cannot be prevented, because the changes that cause lymphoma happen for reasons we cannot control. There is one useful exception: because a slow-growing stomach lymphoma is linked to H. pylori infection, testing for and treating that infection — when it is found — lowers the risk and can even be part of treatment. Otherwise, the best approach is to notice symptoms early and get them checked, and to keep your immune system as healthy as possible by not smoking and managing long-term conditions with your doctor.

Vaccines

There is no vaccine against lymphoma. Keep up with routine vaccinations and ask your doctor which vaccines are safe before, during, and after treatment, since some are not recommended while your immune system is suppressed.

Screening programmes

There is no routine screening programme for gastrointestinal lymphoma. If you have a condition that raises your risk — such as long-standing coeliac disease, a weakened immune system, or previous H. pylori infection — your doctor may arrange monitoring or tests. People with long-standing indigestion or stomach symptoms may be offered a camera test of the stomach depending on their age and other symptoms.

Complications

If left untreated

• The lymphoma can grow and cause a blockage in the stomach or bowel, leading to vomiting and difficulty eating or passing stools
• Bleeding into the gut, which can cause anaemia or, rarely, severe blood loss
• A hole (perforation) in the gut wall, which is a medical emergency
• Weight loss and poor nutrition from pain, nausea, or feeling full quickly
• Spread to lymph nodes or, less often, other organs such as the bone marrow
• Pressure on the liver or bile ducts causing jaundice (yellowing of the skin and eyes)

Long-term outlook

The outlook varies a lot depending on the type of lymphoma, how far it has spread, and your general health — but there is real reason for hope. Some slow-growing stomach lymphomas do very well and can be controlled for many years, sometimes responding fully to treatment that clears H. pylori. Many faster-growing types are treated with the aim of cure, and a large proportion of people go into long-term remission. Your doctor is the best person to talk to about your own situation, and they can explain what the evidence suggests for your specific type.

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