Every Number Tells a Story – Being Diagnosed and Living with Neuroendocrine Cancer
Nov 10, 2016
By Grace Goldstein
Imagine having aches and pains, fatigue, countless visits to doctors who listen as you describe your symptoms, and you still don’t get the answers that you are seeking. This is the experience for many people who are diagnosed with a neuroendocrine tumor (NET).
As an advocate for people with carcinoid and neuroendocrine cancer for more than 13 years, I have spoken and corresponded with thousands of patients and their loved ones and have heard many stories. The First Global NET Patient Survey, a collaboration between the International Neuroendocrine Cancer Alliance (INCA) – a network of charitable organizations and patient groups around the world – and Novartis, shined a light on the common experiences of NET patients around the world and what it’s like to live with this disease.
The numbers tell the story – nearly 2,000 NET patients from 12 countries on 4 continents who took the Survey shared how long it took to be diagnosed, how many healthcare professionals (HCPs) they had to see to get that diagnosis, and the impact of this rare disease on their daily lives.
Often misdiagnosed with more common illnesses such as Crohn’s disease, irritable bowel syndrome, rosacea, and asthma, 60 to 80% of the respondents said their disease had spread throughout their body by the time they were correctly diagnosed.
And perseverance is key for a rare disease like NET. For a third of the Survey respondents, it took more than 7 visits with HCPs before they knew they had a NET.
Living with a NET can have a significant impact on people’s daily lives – everything from energy levels and making dietary changes to finances and relationships with spouses, partners, family and friends. According to the Survey, more than 50% of the patients said they experienced fatigue (general fatigue, muscle fatigue, weakness), often on a daily basis.
But on World NET Cancer Awareness Day, it’s important to highlight the many reasons to be hopeful about NETs – with greater awareness, people may be diagnosed earlier, which could potentially lead to a better quality of life together with perhaps a longer life. New imaging tools and treatment options are being approved and made available, and research continues with the hope of one day finding a cure for NETs. In addition, there is a worldwide community of NET patients and patient advocates always willing to listen, share information, and be supportive. We’re here to help!
Grace Goldstein is the Chief Operating Officer of the Carcinoid Cancer Foundation (CCF), where she has worked for more than 13 years. Grace represents CCF in the INCA. CCF is one of the founding members of INCA. She was chosen by her colleagues to be the first President of INCA in 2013 and has also served on INCA’s Board of Directors. In 2014, Grace received the Monica Warner Award for Patient Advocacy, presented by Novartis Oncology. The award was established in 2009 to commemorate the life and work of the late Monica Warner.