Starting a Family | Living with GEP-NETs

Starting a family is an exciting, and daunting, prospect for anyone. If you have GEP-NETs 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 – for men or women. 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 change to your GEP-NETs 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:2-5

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

REFERENCES:

The NET Alliance. Neuroendocrine tumours: a Guide for nurses. Available at:
https://www.carcinoid.org/wp-content/uploads/2015/10/NET-Nurse-Guide-_online-version_-24MAY12.pdf. Last accessed September 2020.
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.
UpToDate. Diagnosis of multiple endocrine neoplasia. Available at:
https://www.uptodate.com/contents/multiple-endocrine-neoplasia-type-1-clinical-manifestations-and-diagnosis Last accessed September 2020.
WebMD. Neuroendocrine tumors. Available at:
https://www.webmd.com/cancer/neuroendocrine-tumors-causes#1. Last accessed September 2020.
WebMD. Neuroendocrine tumors. Available at:
https://www.webmd.com/cancer/neuroendocrine-tumors-causes#2. Last accessed September 2020.