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CHANGING THE NARRATIVE

News reports of neuroendocrine cancer (also known as neuroendocrine tumor or NET) have often been about famous people such as Aretha Franklin who died from the disease last year. Oftentimes, reports of famous celebrity deaths such as Aretha Franklin or Steve Jobs are the first time people hear about NET. Last week, we learned that Senator Bernie Sanders lost his daughter-in-law Raine Riggs to neuroendocrine cancer. Sadly, she passed away just two days after receiving a diagnosis of neuroendocrine cancer at the age of 48.

These deaths then serve as a reference point for the disease to the general public. This means that when we talk about NET, we might say something like “it’s the same type of cancer that Aretha Franklin had.” While these stories increase awareness about NET, we acknowledge that they can be disturbing to NET patients and caregivers. They are unpleasant reminders that NET is unpredictable and rarely curable, and that, sadly, people do in fact pass away from the disease. Such news can be shocking to those struggling to hold onto optimism and hope.


We, the NET community, want to shift the focus from dying from NET to living with NET. We want to change this narrative so that people associate NET with living with the disease rather than dying from it. Living with the disease is our reality. With increasing awareness, improved diagnostics for earlier and more accurate detection, and more treatment options, we believe that more and more people will live with NET.


This month, there are two ways YOU can help to change the narrative about NET!

First, you have the opportunity to make an impact by simply taking a survey called SCAN.


By participating, you will join collaborative efforts to collect data from the NET community in order to identify and address gaps in care. Your voice matters! By participating in the survey, you can help identify challenges in access to diagnostics and treatment for NET patients!


Under the motto We SCAN, the International Neuroendocrine Cancer Alliance invites NET patients, caregivers, and healthcare providers to share their perspectives of NET. The goal of the survey is to collect robust global data and answer key questions related to awareness and availability of NET diagnostics and treatments worldwide versus the out-of-pocket costs for those living with NETs.


Mapping the access challenges worldwide from both the patients’ and healthcare professionals’ perspectives will help the NET community build a strong argument about global equity. The survey is available in 14 languages and can be completed by clicking here until October 31, 2019.


Data from the survey will be initially disseminated around World NET Cancer Day, November 10th. SCAN results will be showcased at medical conferences, published in medical journals, presented at meetings with the decision-makers in the healthcare field to focus attention on the gaps in access to early diagnosis, treatment and optimal care globally.


Second, we can do this by sharing our stories about what it means to live with NET.


One tangible way to share your story is to join the Healing NET Tapestry Project.


The Healing NET Foundation is collecting written stories, photos, and videos from patients, caregivers, healthcare providers, or any other person supporting better care to the NET community to share on social media to bring awareness to NET cancer. The deadline to contribute is World NET Cancer Day, November 10, 2019.


Join us for the LACNETS NET Cancer Day Symposium on Sunday November 10th at City of Hope. (Read our previous NET Cancer Day blogpost here).

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