This information is all about gastrointestinal stromal tumour (GIST). It includes information about diagnosis and treatment, as well as where to get more support if you’re diagnosed with GIST.
What is GIST?
Gastrointestinal stromal tumour (GIST) is a rare type of sarcoma that develops in the gastrointestinal (GI) tract. Around 795 people are diagnosed with GIST each year.
The GI tract is a long tube running from your mouth to your bottom. It also includes the stomach and intestines.
- Gastrointestinal means that it occurs in the GI tract.
- Stromal means the tumour is in the stromal cells that hold organs in place.
- Tumour means a solid lump or mass.
Although GIST can affect anyone at any age, the average age is 68 years old. GIST also affects more men than women.
Types of GIST
There are different types of GIST cancer:
Wild-type (WT) GIST
A type of GIST that is not caused by a KIT or PDGFRA cell mutation.
Paediatric GIST
A rare type of GIST that affects children and young adults.
Syndromic GIST
A type of GIST linked to Carney’s Triad Syndrome and Carney-Stratakis Syndrome and neurofibromatosis.
Familial GIST
A rare inherited form of GIST. This means it is passed on from parents through genes.
Symptoms of GIST
The symptoms of GIST depend on the size of the tumour and where it is in the body. Symptoms might include:
- blood in your poo or vomit
- low red blood cells (anaemia)
- fatigue
- fever and sweating at night
- discomfort or pain in your stomach
- a painless lump in your stomach
- feeling sick and vomiting
- weight loss.
Diagnosing GIST
A team of specialists will help to diagnose GIST. You might have tests that include:
- a clinical examination to look at or feel any lumps
- a scan to take a picture of the inside of your body
- a biopsy to take samples of tissue to test.
GIST is mostly caused by a mutation in a gene called KIT or a gene called PDGFRA. Because of this, your tissue sample will be sent for mutational analysis. This is a test to find out which gene mutation caused the GIST.
Most GISTs are linked to KIT mutations. However, if your GIST is caused by a PDGFRA mutation, it can affect your treatment options. Not all medicines to treat GIST work for PDGFRA mutations, for example, imatinib.
For KIT mutations, the part of the gene affected can impact how well treatment works.
Treating GIST
The type of treatment you have will depend on what part of the GI tract is affected and the stage and grade of the cancer.
Surgery
Surgery is usually the first treatment for GIST. A surgeon will remove the tumour and surrounding tissue, known as a margin. This means cancer cells that are hard to see are removed along with the tumour. This reduces the risk of cancer coming back. Sometimes you will have targeted therapy before surgery to reduce the tumour size.
GIST in your small bowel
If GIST is found in your small bowel, you may have an operation to remove the tumour. This can involve removing part of the bowel. There are usually no long-lasting side effects.
GIST in your stomach
You may need to have part or most of your stomach removed. This will affect how you eat. Specialist dietitians can give you advice and support about making changes to your diet.
Targeted therapy
If your tumour is too large to be removed safely, or your GIST has already spread to other parts of the body, it might be treated using targeted therapy.
The three targeted medicines that are used for GIST are imatinib, sunitinib, and regorafenib.
Sunitinib
Sometimes your tumour might become resistant to imatinib, meaning the treatment no longer works. If this happens, sunitinib is used as a second treatment option.
The most common side effects are:
- breathlessness
- high blood pressure
- tiredness
- swelling caused by fluid under the skin or around the eye
- changes to your mouth, such as sores, pain or irritation
- skin rash particularly affecting hands and feet
- hair colour changes
- upset stomach (vomiting, diarrhoea, constipation)
- dizziness
- headaches.
Regorafenib
Regorafenib is used to treat people who have GIST that cannot be operated on or has spread to another part of the body. If you have had treatment with imatinib and sunitinib that has not worked or has caused bad side effects, then regorafenib is an alternative treatment.
The most common side effects are:
- bruising or bleeding easily
- low red blood cells (anaemia) not feeling hungry
- high blood pressure
- voice changes or a hoarse throat
- changes to your mouth, such as sores, pain or irritation
- skin rash
- feeling sick or being sick
- problems in your liver.
Targeted therapies like these can harm your fertility. Speak to your doctor or clinical nurse specialist about your options for having children before treatment starts. They may advise you not to try for children during treatment.
Side effects
Speak to your doctor if you have any side effects to your medicines. They can help you to manage them.
Clinical trials
You may be offered the opportunity to take part in a study to investigate new diagnosis methods, drugs and treatments. Some studies also look at the care and well-being of patients. Your doctor or nurse can give you more information on opportunities for you to take part in a clinical trial.
A number of clinical trials are underway looking at new drugs that may overcome some of the limitations of the existing drugs used to treat GIST. Some clinical trials are trying to find better ways of using the drugs already available. Find out more on our clinical trials hub.
Treatment before surgery
If the tumour was too large to be removed at the time of diagnosis, or is close to other organs, it may be treated by a targeted drug like imatinib. If the tumour has shrunk enough after 6 to 12 months, it may be possible to do an operation more safely.
Treatment after surgery
If you have had your tumour removed but are still at high risk of cancer coming back, you might have adjuvant therapy. Adjuvant therapy is an additional treatment after surgery that reduces the risk of cancer coming back.
Adjuvant therapy using imatinib can be used for up to 3 years. Further trials are happening to find out if longer treatments are effective.
After treatment
After your treatment is finished, you will have follow-up appointments for several years. This is where your doctor can look for signs of GIST coming back.
During follow-up, you will have:
- a chance to discuss symptoms
- examinations to look for any signs of GIST returning, such as a CT or MRI scan.
If your GIST does come back, you will start a new treatment plan.
Recurrence
A recurrence of cancer can happen in other parts of the body. This is called a metastasis or secondary cancer. Secondary cancers in GIST can appear anywhere, but are more common in the abdomen and liver.
You will usually be treated with targeted therapy. During treatment, your specialists will monitor you to see how well the treatment is working. You can get support from your sarcoma clinical nurse specialist (CNS) on managing symptoms and side effects.
Living with GIST
Living with cancer can be hard. We have support to help you with your mental health, physical health, and we also have financial support. No matter what you’re worried about, we’re here to support you.
If you have any more questions about GIST, or if you need to talk to someone, our Support Line team are here for you.
More support
Call the support line
The Sarcoma UK Support Line is here for every person affected by sarcoma. Get in touch for friendly, expert, confidential and free advice on anything to do with sarcoma.
Join a support group
There are a number of sarcoma support groups across the UK. We have more information about support groups available online and in your local area.
Order our GIST booklet
Our booklet includes more information about GIST, as well as a diary to log your appointments and contact details of your specialist team. Order our GIST information booklet on our shop, for free.
Support from GIST Cancer UK
GIST Cancer UK is a charity supporting people with GIST cancer. They also promote treatments and research cures.
They host a private online patient and carer forum, where you can connect with other people living with or affected by GIST.
The PAWS-GIST national alliance
The PAWS-GIST national alliance aims to raise awareness, improve treatments, stimulate research and understand the causes and mechanisms of GIST in children, young people and those with wild-type GIST.
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Last reviewed January 2026 | Next review due January 2029
All references are available upon request. Please email info@sarcoma.org.uk
