Gastrointestinal Stromal Tumor (GIST)
Organ-sparing robotic surgery and targeted therapy, matched to the tumor's mutation
GIST is a different disease from stomach or bowel cancer, even though it grows in the same organs. It responds to a specific class of targeted drugs, and surgery for GIST follows its own rules. Dr. Papenfuss treats GIST as part of a sarcoma program in Milwaukee that serves patients from across Wisconsin, and has written about it on this site's blog.
What it is
GISTs arise from the pacemaker cells in the wall of the digestive tract, most often the stomach, then the small intestine. They range from tiny incidental findings to large masses, and their behavior depends on size, location and how fast the cells are dividing. Most carry a mutation in the KIT or PDGFRA gene, which is both what drives them and what makes them treatable with targeted pills such as imatinib. Many are found by accident on scans or endoscopy done for other reasons.
How it is treated
Surgery is the main treatment for localized GIST. Unlike cancers of the stomach lining, GIST does not usually spread to lymph nodes, so the operation removes the tumor with a rim of normal tissue and spares the surrounding organ as much as possible. Most gastric GISTs are removed robotically with a wedge of stomach rather than a full gastrectomy.
Targeted therapy before surgery (imatinib for several months) can shrink a large tumor so the operation is smaller and safer.
Targeted therapy after surgery for three years or more in higher-risk tumors, which substantially lowers the chance of recurrence.
Molecular testing of every tumor, because the specific mutation determines which drug works and the dose.
Surveillance rather than surgery for very small gastric GISTs under about 2 cm that show no worrying features.
Dr. Papenfuss's approach
Dr. Papenfuss removes most GISTs robotically with organ-preserving techniques, and every case is reviewed with medical oncology and pathology to decide whether drug therapy should come before surgery, after, or both. Patients with GIST that has spread are managed on targeted therapy with surgery reserved for specific situations where it adds benefit. Rare GISTs without a KIT or PDGFRA mutation are referred for additional genetic testing and, where appropriate, clinical trials.
When to get a second opinion
If you were told you need a total gastrectomy for a GIST, or if molecular testing was not done, ask for a review. A records review can happen before you travel.
Call 414-649-3240 to request a consultation.
This page is general information, not medical advice for any individual patient.