In our LRG community, we’ve seen many examples of GISTer family planning but also women who have found out they had GIST while they were pregnant. What are some of the considerations in both situations and where can patients go for resources and information?

Begin with a GIST specialist.

Whether you are a newly diagnosed patient, a patient currently on treatment desiring to get pregnant, or a pregnant patient diagnosed with GIST, we strongly recommend that you consult with a GIST specialist. This specialist may be able to work in conjunction with your local oncologist if distance to a GIST specialist is an issue.

You may want to involve other specialists – It is also important to have a specialist in maternal-fetal medicine on your team to assess all aspects of your pregnancy.

Additional Considerations:

It is critical to know your mutation. If you don’t know your mutation, have a biopsy performed to find out your mutation and risk of recurrence.

If you’re newly diagnosed…This depends where you’re starting. If you are newly diagnosed and have not begun treatment, you may want to consider consulting a fertility specialist and discussing the possibility of preserving your fertility. This option applies to both female and male patients. It is essential to consider that future surgeries and drug treatments could affect your ability to get pregnant or bear children safely. There is also the consideration that you might not be able to stop your treatment long enough to ensure that the drugs are out of your system and that scans show no evidence of disease or recurrence before you even try to get pregnant.

If you are pregnant and discover you have GIST or on treatment already?

Cases of discovering a GIST while pregnant are rare, with only 11 reported. Adjuvant imatinib therapy, which targets the most common driver mutations, KIT and PDGFRA, is recommended for patients with high-risk GIST, but it has known teratogenicity (capable of producing congenital malformations) in the first trimester. Because of this, tumor molecular profiling is critical1. Each individual case will need assessed based on mutational testing results and risk of recurrence.

Here are some great resources and stories to help you sort through some of these issues:

What to Expect When You’re Trying to Expect –

April Lopossa – A young mother finds out she has GIST while pregnant.

Carolina Ponce – An SDH-deficient patient makes family planning choices.

Carrie Broussard – GISTer discovers she’s pregnant while on treatment.


(1)Charo LM, Burgoyne AM, Fanta PT, et al. A Novel PRKAR1B-BRAF Fusion in Gastrointestinal Stromal Tumor Guides Adjuvant Treatment Decision-Making During Pregnancy. Journal of the National Comprehensive Cancer Network: JNCCN. 2018 Mar;16(3):238-242. DOI: 10.6004/jnccn.2017.7039.

Florou V, Ramdial, J, Trent, JC. GIST in Pregnancy: The Role of Circulating Tumor DNA to Define the Assessment of Risk of Rapid Progression and Response to Imatinib. Journal of Clinical Oncology 2018 36:25, 2659-2660.

Zarkavelis G, Petrakis D, Pavlidis N. Gastrointestinal stromal tumors during pregnancy: a systematic review of an uncommon but treatable malignancy. Clinical & Translational Oncology : Official Publication of the Federation of Spanish Oncology Societies and of the National Cancer Institute of Mexico. 2015 Oct;17(10):757-762. DOI: 10.1007/s12094-015-1315-x.