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NETs is the umbrella term for a group of unusual, often slow-growing cancers, which develop from cells in the diffuse endocrine system. They are found most commonly in the lung or gastrointestinal system, but they can also originate in other parts of the body such as the pancreas, ovary, and testes, among other sites. Find out more on:
Over 90% of all NETs patients are incorrectly diagnosed. A correct diagnosis is usually not made until the cancer has already spread (metastasized) Patients are treated on an average of 5-7 years for the wrong disease. Early diagnosis dramatically improve outcomes for patients Find out more on:
The symptoms of NET cancers can vary, depending on the location and biological properties. Very often, the symptoms are similar to other, more common conditions. Early symptoms may include vague tiredness or digestive complaints, or there may be no symptoms at all. Some typical symptoms include the following: Intestinal Carcinoid Bowel obstruction Flushing Diarrhea Abdominal pain Wheezing Bronchial Carcinoid Wheezing Cough Bloody sputum Pancreatic NET Epigastric pain Chronic ulcer disease Intermittent low blood sugar Rash Diabetes Diarrhea Find out more on:
NET cancers are difficult to diagnose. After the onset of symptoms, which are often nonspecific and vague, a diagnosis can take an average of 5 – 7 years. If NET cancers are detected early in their development, they can often be cured with surgery. At present, however, most NET cancers are diagnosed at a later stage, when they have already spread to other parts of the body. In these cases, they can rarely be cured, although the symptoms can often be managed successfully for a number of years. Find out more on:
Size – they are often small; some NET cancers can be less than a centimeter in size Location – NET cancers can occur almost anywhere in the body Symptoms – these can vary enormously, and some patients have no symptoms at all Testing – there are many different types of NET cancer, and a series of specialized tests is necessary. A biopsy is a definitive tool for a NET cancer diagnosis. Find out more on:
The treatment of a NET cancer depends on the size and location of the tumor, whether the cancer has spread, and the patient’s overall health. These are a complex group of cancers to manage, and, ideally, a multidisciplinary team of specialists will work with the patient to determine the best treatment plan. A multidisciplinary team will always have several goals in mind as they formulate a treatment plan. Find out more on:
Juli was diagnosed with Neuro-Endrocrine Cancer in September 2009 after a year of non-specific signs and symptoms. She was offered a trial chemotherapy of four cycles. Unfortunately, due to the time delay prior to diagnosis, this had no effect and the tumors had already spread from the lung, to the liver and to different bones around the body. She later had some radiotherapy to ease the pains in her hip, whilst this was helpful, the bone metastases have since increased, and hence the associated pain has increased. The Royal Free Hospital in London are pioneering a targeted treatment, aimed specifically at blocking the receptors of Neuro-Endrocrine Tumors. This is called Radionuclide Therapy, and she is eligible for this treatment. However, the Dorset PCT have turned down funding so her friends and family are helping to raise the £24,000 needed to have this treatment following her next course of chemotherapy. Read more about her story herehere Find out more on:
In June 2010, Juli and her family set up the JULI SPENDLEY FOUNDATION, to assist sufferers, who like herself, have been denied funding for specific targeted treatments that could prolong their lives; as well as helping to bring a better understanding of this disease to the medical profession allowing faster diagnosis and earlier treatment. (Click on image below to go to the her website) Follow the Foundation on Facebook herehere Find out more on:
Please click to sign the Proclamationsign the Proclamation Find out more on: