An Overview of Gastrointestinal Stromal Tumors (GIST) Cancer: The Comprehensive Guide

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An Overview of Gastrointestinal Stromal Tumors (GIST) Cancer: The Comprehensive Guide

An Overview of Gastrointestinal Stromal Tumors ancer: The Comprehensive Guide

Between 4,000 to 6,000 American adults are diagnosed with GIST yearly. Because it’s an uncommon disease, the specific number of cases is unknown. This fact doesn’t make it any less frightening. This article will tackle important information involving this disease.

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What Are Gastrointestinal Stromal Tumors (GIST)?

Gastrointestinal stromal tumors, or GIST as its medical abbreviation, come from the formation of abnormal cells in the gastrointestinal (GI) tract tissues. It is a type of soft tissue sarcoma. The GI tract is where food and liquid travel through our body to provide it with nutrients. These nutrients involve but are not limited to the following:

  • Vitamins
  • Carbohydrates
  • Fats
  • Minerals
  • Proteins
  • Water
The GI tract is a part of our digestive system and includes the stomach, the small intestine, and the colon or large intestine.

Some GISTs grow gradually and may never pose a threat or problem, but some grow and spread rapidly. They are common in the stomach and small intestine but can be found anywhere in the GI tract wall or near it.

Children can also have GIST. Check this PDQ on Childhood GIST Treatment. PDQ is an online cancer information source by the National Cancer Institute (NCI).

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What Are the Risk Factors of Gastrointestinal Stromal Tumors?

Preventing GIST tumors is a challenge as no known risk comes from an individual’s environment or lifestyle.

The only factors that are proven to increase the risk of having a GIST tumor are old age and rare genetic factors. Although most cases are those of people over their 50s and rare in those younger than 40, there is still a possibility that the tumors can occur in age groups.

Genetic Factors

These genetic factors are the inherited mutations or changes in a specific gene. These mutations can affect several members of a family, although these are rare cases.

Though rare, GISTs can be because of a genetic syndrome. A genetic syndrome is composed of symptoms that are checked to see if a particular disease is present or is viable. Abnormal genes cause these syndromes.

The abnormal genes connected to GIST are as follows:

  1. Neurofibromatosis type 1 or NF1: NF1 is a rare condition that causes tumors on nerves and skin, with freckles or brown spots on the skin even if they are not exposed to the sun. It’s also accompanied by changes in the development of the nervous system, bone, muscles, and skin.
  2. Carney triad: It is an extremely rare condition with the appearance of a tumor in the GI tract, often in the stomach. These tumors form in the embryonic nervous tissue in the head, neck, torso, cartilage in the lungs, adrenal glands, even the esophagus and are most common in young females.

What Are Some GIST Tumor Symptoms?

Some signs of GIST are blood in both stool and vomit. The blood can either be bright or dark red. Tiredness, pain in swallowing, and feeling full with only eating little food are also indications of this disease.

Small GISTs are common and can be as little as a pencil’s eraser. These tumors can be discovered while you’re in for another procedure, and they may not grow and spread. However, doctors have varying opinions on whether these tumors must be removed or wait until they germinate.

Always remember to check with your doctor first about these signs as they may be symptoms of other conditions.

Gastrointestinal Stromal Tumor Prognosis

After making sure that the signs identify under GIST, what is the next course of action? Like any other illnesses, further tests and possible treatments are calculated for the patient’s survival.

Even with an 83% gastrointestinal stromal tumor survival rate over the course of five years, the road to treatment and recovery of GIST will still depend on many factors such as the tumor type and treatment availability.

This rate changes depending on where the treatment has gone. Rates are:

  • 94% if it hasn’t spread
  • 52% if it reached a distant part of the body

What Are the Tests Run to Determine GIST?

The following tests are done to determine GIST:

Physical Examination and Health History Check

Physical examination is done to look for signs of the disease such as lumps or anything unusual that has not been determined and observed in the patient’s personal health history before.

CAT or CT Scan

Also called computed, computerized, or computerized axial tomography, this is a series of detailed pictures of the inside of the body taken from different angles. These pictures are created by a machine connected to an X-Ray machine. Swallowing or injecting a special dye or contrast material in the veins will help the doctor see the images more clearly.

MRI or Magnetic Resonance Imaging

This is also called NMRI or Nuclear Magnetic Resonance Imaging. It produces detailed pictures of what’s inside the body with the help of a magnet, radio waves, and a computer.

Endoscopic Ultrasound and Biopsy

An endoscope is a long and thin instrument with a light and a lens. It’s inserted through the mouth, and it can pass through the esophagus to the stomach until it reaches a part of the small intestine. A probe is attached to the endoscope end, which bounces high-energy sound waves off the internal tissues and organs to create echoes. This process is the ultrasound. These echoes paint a picture of the tissues inside the body through a sonogram. The whole operation can also be called “endosonography.”

With the help of the sonogram, the tissue is removed using a thin needle. This tissue is then tested by a pathologist under a microscope and searched for any cancer cells.

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After GIST Is Found, What Tests Can Be Conducted?

If a doctor detects GIST in your tissue, these tests may follow:


To check for antigens or markers in the sample tissue provided for testing, antibodies are used in this laboratory test. These antibodies relate to either a fluorescent dye or enzyme, and they bind to a particular antigen, so the enzyme gets activated. This makes it easier to view the antigen using a microscope and to know what type of cancer there is.

Mitotic Rate

Mitotic rate is used to measure the speed at which the cells divide and grow; the mitotic rate is utilized. This can be done by counting the cells dividing in specific cancer tissue.

What Happens After the Diagnosis of a GIST Tumor?

After diagnosing the tumor, tests are done to see if it has spread to other parts of the GI tract or other locations in the body. This process is called “staging,” as it’s used to know what stage the tumor is in.

What Are the Tests Used in Staging?

There are several main tests used in staging:

  • PET Scan (This test helps in searching for malignant cells with the use of injecting a small amount of radioactive glucose or sugar into a vein.)
  • Bone Scan (The bone scan is used to see any rapidly dividing cells in the bone with the use of radioactive material injected into the vein and into the bloodstream.)
  • CAT or CT Scan
  • MRI

How Does Cancer Spread to Other Parts of the Body?

The primary tumor, or the very first tumor, travels through different passageways of the body. This process is called metastasis.

Tumors formed in other parts of the body through metastasis are called metastatic tumors and follow the primary tumor type. For example, even if the GI tract’s metastatic tumor spreads to a lung, it is not called a lung tumor but a metastatic GIST.

Cancer can spread in three ways:

  1. Tissues
  2. Lymph system
  3. Blood

In tissues, cancer goes and extends to close areas. In the lymph system, cancer moves through the lymph vessels to other body parts. While in the blood, cancer gets into the blood and blood vessels and spreads to other body parts.

The results of these tests are used to determine a proper treatment procedure. Prevention is better than cure, but if the initial prevention did not lead to any fruition, a cure is the only way available. To properly know what can cure this cancer, proper tests should be run.

In the case of GIST, treatments are not based on what stage the cancer is in. Instead, it is dependent on whether the tumor can be removed through surgery (Resectable) or if it already spread to other parts of the body (Unresectable).

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Can the Tumor Be Removed Entirely Through Surgery?

If the tumor is 2 centimeters or more prominent, treatment will include surgery with the hope of completely removing the tumor.

For tumors with the size of centimeters or smaller, laparoscopic surgery can be done. If the tumor can’t be entirely removed by surgery, either because of size or location in the body, targeted therapy is applied to shrink. After shrinkage, surgery is done to remove the tumor.

If the tumor is recurring, stable, or not affected by the treatment, increased in size, or has complications and infections, targeted therapy or clinical trials may be applied.

What Are the Stages of GIST Cancer?

Four questions are asked to determine what stage the GIST cancer is in. They are as follows:

  1. Where did the tumor start?
  2. What is the size of the tumor?
  3. Did the tumor spread to other parts of the body? If so, where?
  4. What is the mitotic rate?
Stage IA Stage IB Stage II Stage II Stage IIIA Stage IIIB Stage IV
Where did the tumor start? Stomach Stomach Stomach Stomach Stomach Stomach Stomach
What is the size of the tumor? 5 cm or less Between 5 to 10 cm 5 cm or less 10+ cm Between 5 to 10 cm 10+ cm Any size
Did the tumor spread to other parts of the body? If so, where? No No No No No No Yes
What is the mitotic rate? Low Low High Low High High Low or High
Stage I Stage II Stage IIIA Stage IIIA Stage IIIB Stage IV
Where did the tumor start? Small intestine, Colon, Rectum, or Esophagus
What is the size of the tumor? 5 cm or less 5 cm or less 2 cm or less 10+ cm 2 + cm Any size
Did the tumor spread to other parts of the body? If so, where? No No No No No Yes
What is the mitotic rate? Low Low High Low High Low or High
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What Are the Available Treatments for GIST?

The treatments for gastrointestinal tumors are divided into two: Standard Procedures and Clinical Trials.

Standard Procedures

The standard procedures are the treatments that are currently used to cure GIST. There are four types of usual standard procedures: waiting, surgery, targeted therapy, and supportive care.


Sometimes, trying to cure something without understanding it fully can make it worse. Waiting to know more about the disease and staying alert for any signs or symptoms can prove to be a more effective way than immediately jumping into advanced treatments.


Surgery is best for small tumors that have not spread to a place where surgery can’t be done. When planning for surgery, the most important thing to consider is the safety of the patient. The tumor can be operated on if it’s not located in a place that is dangerous to probe.

During surgery, the tumor and other tissues along it will be removed with the hope that it will not come back again.

Targeted Therapy

In targeted therapy, drugs and other substances are prescribed to attack specific cancer cells that have unique attributes. This treatment is preferred because it’s less harmful to normal cells versus chemotherapy or radiation therapy.

An example of a drug that’s used in targeted therapy is tyrosine kinase inhibitors or TKIs. This targeted therapy drug works by blocking the signal that makes the tumors grow. In addition, TKIs don’t have known severe side effects.

Targeted therapy is used when the tumor can’t be removed by surgery. It can also be used to shrink the tumor until it’s small enough to be removed through surgery. Research about other drugs that can be used in targeted therapy is still under study.

Supportive Care

The objective of supportive care is to improve the quality of life of the patient. When side effects of treatments occur, radiotherapy is often used to relieve the pain. But these medical treatments are not the only things that can help any individual fighting a disease. Psychological, mental, and spiritual care is also needed to fully support the patient.

Clinical Trials

With continuous research and goals to have new treatments that are better and less harmful, clinical trials are always underway. These are the procedures that are still under research study and observation and can be tried by any patient as long as they are aware of possible side effects.

These trials are made to improve the current standard procedures or create a new approach that will be more effective. May it be patients in various stages of their treatment (before, during, after), can participate in clinical trials. These trials are open to patients who want to try them. However, patients considering clinical trials are advised to be vigilant about being under clinical trials as these procedures are still not proven to be a hundred percent effective and safe.

As a notable reminder, always be wary of repeat tests. For both standard procedures and clinical trials, tests will always be done repeatedly, and it will take a toll on the patient and the family’s well-being. These after tests and follow-up tests are required to know if the treatment is working or not. If the treatment needs adjustments or should be stopped will also be determined through this series of follow-up tests and checkups.

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What Are the Factors Affecting Gastrointestinal Stromal Tumor Treatments?

The following are some factors that affect GIST treatments:

  • The rate at which the cancer cells are splitting and growing (Mitotic rate)
  • The tumor’s size
  • The tumor’s location in the body
  • The tumor’s chance to be removed by surgery or any procedure
  • Whether the tumor has spread to other body parts

What Are the Possible Side Effects of Cancer Treatments?

There can be a lot of possible side effects when an individual is undergoing a certain treatment. Side effects also vary depending on a lot of factors, such as that of the individual’s health and the treatment itself.

Among side-effects are the following. These side-effects can occur simultaneously.

  • Loss of appetite
  • Swelling or edema
  • Anemia
  • Issues with fertility
  • Constipation
  • Diarrhea
  • Bruises
  • Bleeding
  • Infections
  • Flu-like symptoms
  • Nerve problems
  • Inflammation of the organs
  • Fatigue
  • Concentration problems
  • Memory lapses
  • Hair loss
  • Nausea
  • Vomiting
  • Sexual issues
  • Nerve problems
  • Urinary problems
  • Bladder issues
  • Changes in the skin and nail
  • Others
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How Does an Individual Live Their Life With GIST?

After being diagnosed with GIST, it is common to feel the overwhelming emotions that accompany this diagnosis. Let yourself go through it as it is not a sign of weakness but rather a normal reaction of us being human.

Researching about your disease is also common. Questions such as “What is a GIST tumor?” are to be expected because even if the doctors explained it well, there’s a time you might find yourself struggling to understand this phase in your life.

GIST is a rare and uncommon type of cancer. Although it is treatable, there will be inevitable changes to an individual’s lifestyle and relationship.

The following are what you can expect:

Your GI tract is affected, and eating will be challenging because of the pain that you will feel. Aside from the pain, nausea and fatigue will make the daily activities you found easy before very taxing and unenjoyable.

If your ongoing treatment or treatments’ side effects become so unbearable that they interfere with your daily living, be open to your doctors about it. They can prescribe you other medications to support the current treatments for relief, or they can start discussing other treatment alternatives with you.

Make sure to properly keep your medical records and health insurance after your treatments for further tests and checkups. Always safe-keep them. These records will help your doctor know the specifics of your case. It is unfortunate, but cancer may come back again, so being alert of what happens after your treatment is essential. In cases where you will need a new doctor, it will also be easier for them to understand your track record if all of them are intact.

How to Cope with GIST

During this time, lifestyle changes are crucial to help your body cope with the demands of the treatments.

They are as follows:


If you hadn’t been wary of what you eat before, then you are now required to eat right. Even if you’ve undergone various tests and have already done treatments, your body still needs to be prepared for more tests to be done.

The surgical treatment has an after-effect of “dumping syndrome” that can be mild or severe. This effect will make the food travel through the GI tract speedily, making it hard to eat the usual meals your body is used to. It is advisable to eat in small portions between two to three hours.

Also, including minerals and vitamins in your diet is vital as having GIST will make it hard for your body to absorb nutrients. Take the appropriate supplements to make up for these lost nutrients but make sure you discuss it with your doctor first so they can prescribe you supplements that are best for your condition.

Avoid sugar as much as possible — in both foods and drinks. Taking a lot of fluids is also not good as it may worsen side effects. Opt for complex carbohydrates instead, like whole grains, legumes, and starchy vegetables.

It’s best to find a dietitian who will help you plan out what you put through your body.


Dealing with cancer and going through treatments will take a toll on your mind and money, but exercising will still benefit you.

But don’t just jump into any exercise routines you see, as you will still need medical clearance to make sure it’s okay for you to strain your body. After getting the approval, get an appropriate program and be wary of your limitations when you workout.


Having the complete 8-hours of sleep will be a priority as your body will demand you to rest, and it is good to listen to it. You can even take naps during the day if you feel like you need to.

Only do the activities you can handle, and don’t push yourself to do more than what you can. Select a schedule or time of the day where you’re most productive and work around those hours.


Don’t be afraid to ask for support from the people around you, especially your family and friends.

Prioritize your mental health as well. Aside from your body, your mental and emotional well-being is also important. Going through a tough disease will wear you out, but don’t isolate yourself.

It’s best to ask for support from organizations and others such as your family members, friends, and spiritual organizations.

The following can be your other support systems:

  • Cancer support groups
  • Online support communities
  • Psychologists
  • Therapists
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How to Take Care of Someone with GIST

Any disease that befalls anyone does affect not only the individual. It also affects the people who care for them. Those who have been diagnosed with GIST will need someone who will help them in their day-to-day activities.

These activities may include the following:

  • Preparing meals for the patient that is appropriate for their diet.
  • Doing and running their errands for them since their body will be weak.
  • Overseeing their bills and other expenses and talking about it with them or a family member they trust.
  • Helping them in bathing, dressing, and other activities related to their hygiene.
  • Scheduling and making sure they take their medications on time.
  • Driving them to checkups, other doctor’s appointments, and other activities they need to be in.
  • Motivating them to make the changes required in their lifestyle.
  • Knowing more about GIST and different ways you can support the individual suffering from it.
  • Knowing the side effects of the current treatment or treatments the individual is on
  • Knowing the expected impacts of their current medications
  • Knowing the next steps in the treatment
  • Being patient with the individual while they are going through treatments and recovery

Battle GIST with All American Hospice: We are Here For You

If you or a loved one is going through this disease and need help, please contact All American Hospice today. We are here to provide you with whatever support you and your family require to make the journey of GIST more bearable.

FAQ Section

If you need a recap of the guide, or if you simply need a quick answer, check out the most commonly asked GIST questions below.

What are gastrointestinal stromal tumors (GIST)?

Gastrointestinal Stromal Tumors or GIST is the formation of abnormal cells in the gastrointestinal (GI) tract tissues.

What are the risk factors of gastrointestinal stromal tumors?

There is no known risk from an individual’s environment or lifestyle. Internal risk factors include:

  • Old age
  • Genetic factors
  • What are some GIST tumor symptoms?
  • Blood in stool
  • Blood in vomit
  • Tiredness
  • Pain in swallowing
  • Feeling full with little food

What are the tests run to determine GIST?

Tests to determine GIST may include:

  • Physical examination and Checking of Health History
  • CAT or CT scan
  • MRI or Magnetic Resonance Imaging
  • Endoscopic Ultrasound and Biopsy

After GIST is found, what tests can be conducted?

Tests that are run after GIST is found may include:

  • Immunohistochemistry
  • Mitotic Rate

What are the tests used in staging?

Staging tests include:

  • Positron Emission Tomography Scan or PET Scan
  • CAT or CT Scan
  • MRI
  • Chest X-Ray
  • Bone Scan

How does cancer spread to other parts of the body?

It spreads:

  • Through the tissues
  • Through the lymph system
  • Through the blood

What are the available treatments for GIST?

Some of the available GIST treatments include:

  • Standard Procedures
  • Waiting
  • Surgery
  • Targeted Therapy
  • Supported Care
  • Clinical Trials

What are the factors affecting gastrointestinal stromal tumor treatments?

Factors include:

  • Mitotic rate
  • The tumor’s size
  • The tumor’s location in the body
  • The tumor’s chance to be removed by surgery or any procedure
  • Whether the tumor has spread to other body parts

What are the possible side effects of cancer treatments?

You may experience these symptoms from treatments:

  • Loss of appetite
  • Swelling or edema
  • Anemia
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