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 (
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
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.