GIST Support Wiki

PET Scans

PET scans are sometimes used in GIST patients to answer questions about tumor growth or activity when CT results are uncertain or ambiguous. However, PET scans are expensive, not available everywhere, and not needed for routine GIST monitoring except in some clinical trials. There is a description of PET scans on the GSI website at Monitoring Tests (scroll down the page).

For an excellent free-access paper summarizing the use of PET and combined PET/CT in GIST, see the following paper.

Van den Abbeele AD. The lessons of GIST--PET and PET/CT: a new paradigm for imaging. Oncologist. 2008;13 Suppl 2:8-13. Review. PMID: 18434632

Getting Insurance or Medicare to Pay for PET

Sometimes insurance may balk at paying for a PET scan. See our pages under Insurance Issues for strategies to get the PET paid for.

Medicare patients can get a PET while the following research project is underway:

National Oncologic PET Registry

Medicare has started a project to determine the potential benefits of PET scans for additional cancer applications, as input data to determine whether additional cancers and purposes should be covered by Medicare's rules for paying for PET scans. Currently Medicare does not pay for PET scans for soft tissue sarcoma patients, including GIST patients. However, during this data collection project GISTers who are on Medicare can get coverage for PET scans by participating in the project.

Specifically, Medicare recipients with GIST may be able to get PET scans covered from participating provider locations if their physicians agree to complete pre-scan and post-scan questionnaires answering simple questions about how the PET affected clinical decisions for the patient and what extra information it provided to guide patient care.

The reasons for giving the PET must fall under one of the following:

  • diagnosis
  • initial staging
  • monitoring treatment response to therapy (includes chemotherapy, radiation therapy, and combined modality therapy). "Surgery plus biological therapy" is one of the "combined modality" options, and this would apply to most GIST patients.
  • restaging after completion of therapy
  • suspected recurrence of previously treated cancer

Therefore, GIST patients on Medicare may want to discuss with their oncologists the option of participating in this National Oncologic PET Registry to obtain Medicare coverage if a PET scan is needed to guide the patient's treatment.

Go to the website above for details and listings of the participating PET locations. Below are a few quotes from that site...

"In order to collect the information needed to decide which other types of cancer should be covered by Medicare, CMS will provide payment for the PET scans of patients who are properly registered with the National Oncologic PET Registry (NOPR). For patients and referring physicians who give permission, this information will then be analyzed to determine the effect PET scans had on the way physicians planned to treat their patients."

"The patient's referring physician must agree to complete Pre- and Post-PET data collection forms that include approximately 5 questions regarding the patient's planned management. ... The case is eligible for CMS reimbursement only if the Pre-PET Form is completed and returned to the PET facility prior to the PET scan and the Post-PET Form is completed and returned within 30 days of the PET scan."

"Who Has Access to NOPR Data? The members of the NOPR working group, NOPR project staff at the American College of Radiology (ACR) and the Center for Statistical Sciences at Brown University, and staff of the Centers for Medicare and Medicaid Services (CMS)."

Privacy concerns are addressed. Note that either the patient or the patient's physician may deny permission for the patient's data to be used in the research project.