Starting a family is an exciting and daunting prospect for anyone, but if you have a GEP-NET, there are a few extra things to think about.

As GEP-NETs grow in the GI tract or pancreas, they don’t affect your fertility directly. However, some treatments may affect your fertility in the short or long term, and there are some treatments you shouldn’t have if you are pregnant or breastfeeding.¹

The first thing you should do is arrange an appointment with your doctor to talk about the impact of your current treatment, and referral to a fertility specialist if necessary. They will be able to provide advice on whether you might need any changes to your GEP-NET treatment or any extra monitoring during pregnancy. They will also be able to answer any questions you might have and talk to you about any potential risks that might be associated with your current treatment.

You should also talk to your doctor if you have been diagnosed with certain genetic syndromes, as there is a chance that these could be passed on to any children you have. Syndromes to be aware of include:^2-4

• Multiple endocrine neoplasia type 1 (MEN1)
• Neurofibromatosis type 1 (NF1)
• Von Hippel-Lindau syndrome (VHL)

References

1. Neuroendocrine Cancer. THE NPF HANDBOOK. Available at: https://www.neuroendocrinecancer.org.uk/wp-content/uploads/2020/03/NET-Patient-Foundation-Handbook.pdf. Last accessed April 2025.
2. O’Shea T, Druce M. When should genetic testing be performed in patients with neuroendocrine tumours? Rev Endocr Metab Disord. 2017; 18(4): 499–515.
3. UpToDate. Multiple endocrine neoplasia type 1: Clinical manifestations and diagnosis. Available at: https://www.uptodate.com/contents/multiple-endocrine-neoplasia-type-1-clinical-manifestations-and-diagnosis. Last accessed April 2025.
4. WebMD. Neuroendocrine tumors. Available at: https://www.webmd.com/cancer/neuroendocrine-tumors-causes#1. Last April 2025.