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NCCN Guidelines for Patients


Soft Tissue Sarcoma, Version 1.2014



Gastrointestinal stromal tumors Treatment planning

to be overactive and the cells to grow fast. Some

GISTs that don’t have a KIT mutation instead have

a mutation in


genes. PDGFRA works very

much like KIT. GISTs with PDGFRA mutations may

have little or no KIT (CD117). Testing of mutations in




genes is strongly recommended.

Tissue removed by biopsy or surgical treatment can

be used for testing.

Imaging of chest

Imaging of your chest may be needed. Chest imaging

will allow your doctors to assess if the cancer has

spread to your lungs. Cancer spread to the lungs is

less common for GISTs than other sarcomas. You

may receive a plain radiograph or CT of the chest.

Chest CTs are often given when images from a

radiograph would be unclear due to lung scarring or

other health conditions.

Endoscopy ± ultrasound

Your doctors may want you to have an endoscopy.

For this test, an endoscope will be inserted down your

mouth and into your digestive tract. Your doctors will

be able to assess the size and spread of the tumor.

Ultrasound may be used to image tissue that can’t be

seen with the endoscope.


PET scans are a type of imaging test. PET scans can

help show if a mass is a growing tumor compared to

dead or inactive tissue. It can also show changes in

chemical activity within a tumor before CT can show

changes in shape. However, PET should not be used

in place of CT. Many imaging centers have machines

that can do both PET and CT.

PET is recommended if you need to start treatment

before surgery that would leave you with long-

term problems if you didn’t have prior treatment.

Comparing PET scans taken before and after starting

drug treatment may show if treatment is working.

Treatment results can be seen within weeks.

To create PET images, a sugar radiotracer is used.

If the radiotracer is FDG (






lucose), you

must fast for 4 hours before it is injected into your

body. Between 40 to 60 minutes after injection, the

radiotracer will emit a small amount of energy. This

energy can be detected by the imaging machine.

In the PET images, cancer appears brighter (“hotter”).

This is because cancer cells use sugar more quickly

than normal cells. Hot spots suggest that cancer is


SDH testing

People who have Carney-Stratakis syndrome are

at higher risk for GIST. Mutations in the gene that

controls SDH have been linked to people with GIST-

related Carney-Stratakis syndrome. If KIT or PDGFRA

testing finds no mutations, then your doctors may

want to have SDH testing.