Let's talk about NETs (Guest blog)
November 10 is NET Cancer Day, an annual event created by the International Neuroendocrine Cancer Alliance (INCA) and supported by many advocacy organizations around the world. The day aims to raise awareness of NETs around the world.
These cancers actually sit under an umbrella term of neuroendocrine neoplasms, which incorporates neuroendocrine tumors (NETs), including genetic NETs, and neuroendocrine carcinomas. This group of malignancies have a wide spectrum of behavior, can occur in many parts of the body (most commonly the gastrointestinal system, lungs and pancreas) and all have a significant and sometimes debilitating impact on those affected.
On this day thousands of patients, their families and supporters, and medical specialists from around the globe come together on social media using the hashtag #LetsTalkAboutNETs, to help raise awareness around this often misdiagnosed and forgotten cancer, and change attitudes around this cancer type in order to secure optimal diagnostic pathways for patients, no matter where they live.
This year we are focusing on the challenges around late diagnosis – why?
Because the faces of patients may change but the facts remain the same – misdiagnosis and late diagnosis is costing precious lives and costing our vital healthcare services around the world.
- 7 out of every 100,000 people globally are diagnosed with neuroendocrine cancer each year - 8.6 per 100,000 in the United Kingdom
- NETs affect men and women of all ages, including children
- NET symptoms can often be non-specific but can include: weight loss, dry, hot flushes, shortness of breath, asthma-like symptoms, fatigue, pain, bloating, abdominal disorders and diarrhea amongst others.
- Symptoms are often similar to more common conditions: IBS, asthma and anxiety, therefore the risk of misdiagnosis is high
- Patients see multiple doctors over many years before a definitive diagnosis is made
- A recent survey undertaken by INCA - Survey of Challenges in Access to Diagnostics and Treatments for NET Patients (SCAN) reported 46% of patients had stage IV NETs at diagnosis, mean time to correct diagnosis being 5 years
“If you don’t suspect it you can’t detect it” – awareness and education are the key
Help support our awareness initiative by following and sharing @netcancerday & NET Cancer Day on social media on November 10th 2020. Thank you!
For more information about the work of the global community please visit our website https://incalliance.org/