(from incalliance.org)
“Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs” – a collaborative effort between the International Neuroendocrine Cancer Alliance (INCA) and Novartis, was published in the Journal of Global Oncology.
The Global NET Patient Survey is the first large, global initiative that attempts to characterize the impact of NETs from the patient perspective.
Impact of survey data
Despite the considerable impact of neuroendocrine tumors (NETs) on patients’ daily lives, the journey of the patient with a NET has rarely been documented, with published data to date being limited to small qualitative studies. NETs are a complex group of tumours that develop predominantly in the digestive or respiratory tracts, but can occur in many areas of the body. NETs are difficult to diagnose as the symptoms may be vague and attributed to more common problems such as irritable bowel syndrome (IBS), Crohn’s disease, peptic ulcer disease, gastritis, asthma, blood glucose problems, menopause and blood pressure problems.
As a patient I can only express tremendous gratitude that we have a voice. Being without a diagnosis for twenty years was a struggle-but I never gave up. Having a diagnosis and trying for a reasonable quality of life is sad sometimes, when medical professionals feel their job is done by simply having identified and surgically treated the tumors. Day to day life is so much more complicated!!!! Thank you for giving us a voice, and not just any voice but a global voice that I hope will resonate in conference rooms throughtout the world when a NET patient is being discussed. For most of us WE HAVE NOT BEEN CURED! For some of us there continues to be a type of post traumatic stress that continues to affect us over and over again waiting for scan/lab results. For others the chronic fatigue that plagues us takes away the dignity of independent living without coping resources.And for the majority of us who will always be fighters and awareness advocates-WELL DONE !!!!!
Please note that my previous Email was incorrect.
It should be dgelewis@hotmail.com
Thank you