When one is diagnosed with an illness, like NETs, mortality can come to the forefront. Even if your NET journey presents a trajectory of being chronic and is stable, it is not uncommon to have thoughts about disease progression and mortality. 

There is also a lot of stigma and discomfort in talking about end of life. The complex nature of neuroendocrine cancer and the variability in its progression can make it hard to predict outcomes, adding to the uncertainty and difficulty in discussing the topic. There is also power in knowing more about this journey and especially the resources that are available for this stage of living. With this episode, we wanted to make space to talk about something that is inevitable- that a part of living is dying. 

Knowing about end-of-life care can empower you to make informed decisions about  your health and quality of life. Understanding the trajectory of neuroendocrine cancer and the options available for end-of-life care can help us navigate difficult decisions with more confidence and clarity. It allows us to plan ahead, discuss your preferences with healthcare providers, and ensure your wishes are respected, leading to a more dignified and comfortable end-of-life experience.

When you listen to this episode, pay attention when Josh Mailman mentions “enjoying every sandwich” and finding your “what matters most.” There is indeed a power in knowing. 

In this episode of NETWise we discussed the paper (posted here) that you can share with your doctor or hospice provider.  Practical considerations when providing palliative care to patients with neuroendocrine tumors in the context of routine disease management or hospice care in a resource for you.

To learn more about creating your advanced directives, go here

Experts in this episode:

Jaydira Del Rivero, MD is a medical oncologist and a board certified endocrinologist at the National Institute of Health.

Julie Hallet, MD is a surgical oncologist at Sunnybrook Health Sciences Centre at the University of Toronto. 

Josh Mailman, a NET patient, NETRF board member and advocate, is a world authority on PRRT for NETs.

Jena Fosdick, BSN is the regional director of clinical operations for St. Croix Hospice in Omaha, Nebraska. 

Special thanks to Boehringer Ingelheim for their support of this podcast.