Neuroendocrine Cancer starts in cells of the neuroendocrine system. This system is a network of cells throughout the body that have a structure similar to neurons (nerve cells) and produce hormones like endocrine cells.
About this Cancer
- There are no specific statistics reported for neuroendocrine tumors (NETs) in Canada, the reason being that these statistics are mostly included with the statistics based on where the cancer started. (i.e. Gastrointestinal (GI) NETs are included in the statistics for GI cancers, such as the small intestine, colon or rectum, or stomach. The earlier NETs are diagnosed and treated, the better the outcome. There are effective treatments available for NETs. (CCS, 2024)
- Survival statistics for NETs are usually based on the experience of groups of people and therefore cannot be used to predict a particular person’s chances of survival. NETs grow slowly and are often found incidentally while looking for or treating another problem. They can be hard to diagnose because the symptoms are often vague. (CCS, 2024)
In its early stage, a NET often causes no symptoms and may only be detected during an unrelated x-ray or surgery for another condition. If a person presents neuroendocrine cancer symptoms, they may be associated with the size and-or location of the tumor or with the release of hormones, such as carcinoid syndrome. These are the following symptoms of Neuroendocrine cancer:
- Fatigue
- Pain due to an expanding tumour
- Losing weight easily
- A growing lump you can feel beneath the skin
For more information visit the Mayo Clinic
Risk factors for Neuroendocrine cancer include:
- Genetic conditions such as
- Multiple endocrine neoplasia, type 1 (MEN 1)
- Multiple endocrine neoplasia, type 2 (MEN 2A and MEN2B)
- Tuberous sclerosis
- Neurofibromatosis type 1
- Von Hippel-Lindau syndrome
- Familial history of cancer
For more information visit The Canadian Cancer Society
The following are tests that may be used to diagnose neuroendocrine cancer.
- Physical examination
- Imaging tests including:
- Computed Tomography (CT) scan
- Magnetic Resonance Imaging (MRI)
- Positron emission testing (PET) scan
- Ultrasound
- Biopsy
You can find more information on neuroendocrine diagnosis at Mayo Clinic.
Treatment for neuroendocrine cancer will depend on a variety of factors like the cancer origin, whether the cancer has metastasized, the stage/grade of the cancer, if the cancer is a neuroendocrine tumour or a neuroendocrine carcinoma etc. Treatment options may include
- Surgery
- Hormone therapy
- Chemotherapy
- Targeted therapy
- Radiation therapy
For more information visit The Canadian Cancer Society
Stories from Other Survivors
- Navigating the Uncertainty of Neuroendocrine Cancer: Insights and coping mechanisms
- Neuroendocrine Cancer Research: The Patients’ Perspective
- The Doctor’s Experience of Living with Neuroendocrine Cancer
- Neuroendocrine Cancer: Follow up, what it means for You
- Jeanne’s story: Hard-to-diagnose tumors finally found
- Fox Chase Cancer Center – Neuroendocrine cancer Patient Stories
- Patient with Neuroendocrine tumor paints, inspires through treatment
- Neuroendocrine Cancer: Elaine’s story
- Richard’s Pancreatic NET Story
Resources
- What is Neuroendocrine Cancer?
- The endocrine & Neuroendocrine System
- Surgery for Pancreatic Neuroendocrine Tumors (NFTs)
- Theranostics PRRT, Radioligand Therapy in Neuroendocrine Cancer
- Surgery for Small Intestinal Neuroendocrine Tumors
- Neuroendocrine Cancer UK Resources
- Sunnybrook – Find a clinical trial
- Navigating the Uncertainty of Neuroendocrine Cancer: Insights and coping mechanisms
- Neuroendocrine Cancer Research: The Patients’ Perspective
- The Doctor’s Experience of Living with Neuroendocrine Cancer
- Neuroendocrine Cancer: Follow up, what it means for You
- Jeanne’s story: Hard-to-diagnose tumors finally found
- Sunnybrook – Neuroendocrine tumors – media
- Fox Chase Cancer Center – Neuroendocrine cancer Patient Stories
- Patient with Neuroendocrine tumor paints, inspires through treatment
- Neuroendocrine Cancer: Elaine’s story
- Richard’s Pancreatic NET Story
Currently there is no research in this section. To add research, email info@survivornet.ca
Neuroendocrine Cancer Groups
- Sunnybrook Health Science Centre: Our mission is to care for our patients and their families when it matters most. Our vision is to invent the future of health care. Our values are: excellence, collaboration, accountability, respect and engagement. From our beginnings as a hospital for Canadian veterans, Sunnybrook has flourished into a fully affiliated teaching hospital of the University of Toronto, evolving to meet the needs of our growing community. Today, with 1.3 million patient visits each year, Sunnybrook has established itself across three campuses and is home to Canada’s largest trauma centre. We are world leaders in the care of neuroendocrine tumours (NET). Our multidisciplinary clinic is the only one of its kind in Canada. Our integrated care model sees all specialists and treatment options under one roof. Sunnybrook’s groundbreaking research changes the way patients are treated around the world. Our over 200 scientists and clinician-scientists conduct more than $100 million of breakthrough research each year. Tomorrow, we will discover ways to treat the untreatable.
- Canadian Neuroendocrine Tumor Society (CNETS): The objectives of CNETS are: To provide workshops and seminars on issues dealing with conditions associated with carcinoid and related neuroendocrine tumour diseases; To establish support groups to provide support services for those affected by carcinoid and related neuroendocrine tumour diseases; To increase awareness of and educate the public and health care professionals on carcinoid and related neuroendocrine tumours, their diagnosis, treatment and management; and to support cancer research by gifting funds to other registered charities or organizations that are otherwise qualified donees as defined in subsection 149.1(1) of the Income Tax Act. The Carcinoid-NeuroEndocrine Tumour Society (CNETS) – Canada was formed in 2007 to assist the Canadian community, primarily patients, with this type of disease.
- European Neuroendocrine Tumor Society (ENTS)
- British Society for Neuroendocrinology (BSN)
- The Pan American Neuroendocrine Society (PANS)
- International Neuroendocrine Federation (INF)
- Neuroendocrine Cancer Australia
- Carcinoid Cancer Foundation (USA)
- Neuroendocrine Cancer UK
- Hypothalamic Neuroscience and Neuroendocrinology Australasia (HNNA)
- International Neuroendocrine Cancer Alliance (INCA)
- The Association for Multiple Endocrine Neoplasia Disorders (AMEND) (UK)
- Carcinoid and Neuroendocrine Tumor Society (CNETS SG) Singapore
- Neuroendocrine Cancer Foundation (USA)
- Neuroendocrine Tumor Southern Africa Support (NETSAS)
- Neuroendocrine Tumor Research Foundation (USA)
- NorCal CarciNET (USA)
- The Healing NET Foundation (USA)
- NET Patient Network (Ireland)
- Pheo Para Alliance (PPA) (USA)
- Neuroendocrine Cancer New Zealand
- The Victory NET Foundation (Swiss)