Neuroendocrine tumors (NETs) are rare cancers found in only about 2% of all individuals diagnosed with cancer each year. There are many varieties, with carcinoid being the most common one. NETs often release certain hormone-like substances into the bloodstream. Most cancers cause symptoms only in the organs they start in or spread to but carcinoid can cause symptoms throughout the body. NETs may appear almost anywhere, but they are most often found in the abdominal region, pancreas and lungs. Because symptoms resemble those of other diseases, such as irritable bowel syndrome and Crohn’s disease, they are often misdiagnosed for years. However, advances in treatment have improved the length of survival in carcinoids and other NETs.
The first type of Peptide Receptor Radionuclide Therapy (PRRT) approved by the U.S. FDA and the European EMA is Lutathera® (177Lutetium 177Lu-DOTATATE).
Sources: Norcalcarcinet.org, UCLAhealth.org
(Courtesy of Prof. Dr. Richard P. Baum, Zentralklinik Bad Berka, Germany) Cure of liver metastases from neuroendocrine pancreatic cancer using intra-arterial peptide receptor radionuclide therapy (PRRNT) shown here before treatment (on the left), one year after application of three cycles of Yttrium-90 somatostatin analogue (middle) and more than 5 years after the first image following the administration of an additional single systemic course of Lutetium-177 somatostatin analogue.
Europe: APOZ & Friends (BGR), Association des Patients porteurs de Tumeurs Endocrines Diverses (FRA), CarciNor, foreningen for personer med nevroendokrin kreft (NOR), Carpa, the carcinoid patient association (SWE), Kooperativní skupina pro neuroendokrinní nádory (CZE), LuCE (CHE), Lungeforeningen (DNK), NET & MEN kanker vzw (BEL), NET España (ESP), NET Italy (ITA), Netpa Danmark (DNK), NET Patient Network (IRL), Netzwerk Neuroendokrine Tumoren (NeT) e.V. (DEU), Neuroendocrine Cancer UK (formerly NET Patient Foundation) (GBR), Pancreatic Cancer Europe Network (EU), Sarcoma Patients EuroNet (EU), Selbsthilfegruppe Pankreaskarzinom (AUT), Stichting NET-groep (NLD), Talk Blue Flanders (BEL)
North America: Carcinoid-Neuroendocrine Tumour Society (CAN), LACNETS (USA), NET Patient Foundation (USA), Neuroendocrine Cancer Awareness Network – NCAN (USA), NorCal CarciNET Community (USA), Pancreatic Cancer Action Network (USA), The Carcinoid Cancer Foundation (USA), The Lois Merrill Foundation (USA), The Patients Project (USA), Walking with Jane (USA)
Asia & Asia Pacific: Afghan Society Against Cancer (AFG), Carcinoid & Neuroendocrine Tumor Society Singapore (SGP), Carcinoid and Neuroendocrine Tumour Society India (IND), Israel Cancer Association (ISR), NeuroEndocrine Cancer Australia (formerly Unicorn Foundation)(AUS), Middle East Neuroendocrine Tumor Society (MENETS) (ISR), NPO PanCAN Japan (JPN), The Hope Society for Cancer Care (TWN)
Compassionate Use Program (CUP)
CUP enables patients with life-threatening diseases, such as advanced cancer, to resort to experimental treatments when standard anti-cancer solutions and access to clinical trials are not an option. Access to CUP programs depends on local regulations and can vary from one treatment to another.
Ask your referring physicians for more information regarding CUP.