This is one of the most mysterious cancers. It can be effectively treated, but it is correctly diagnosed in only one in 25 patients. Often, before an appropriate diagnosis is made, patients are suspected of having gastrointestinal ulcers, irritable bowel, asthma, lung cancer, and even alcoholism or mental illness.
- The neuroendocrine tumor is rare, and doctors also have a problem with its diagnosis
- The symptoms of this tumor are non-specific and can easily be confused with something else
- The symptoms of this cancer include, among others diarrhea, stomach pain or increased sweating
- More information can be found on the Onet homepage.
– A 44-year-old woman was diagnosed with pancreatic cancer and multiple liver metastases. A patient with such a condition would have to be in a very bad condition, but she was fine. After a year of chemotherapy, the tumors did not shrink, and the patient, who should have been dead, was still in excellent shape. Then the proper diagnosis was made – a neuroendocrine tumor – says Prof. Beata Kos-Kudła, head of the Department of Endocrinology in Zabrze, Department of Pathophysiology and Endocrinology, Medical University of Silesia in Katowice.
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Difficult diagnosis
Neuroendocrine tumors arise from cells that can produce hormones and other active substances. They can be scattered throughout the body. They produce nonspecific symptoms that point to many other diseases. These include abdominal pain, diarrhea, hot flushes, skin changes, increased sweating. They are very rare, which is why doctors are not always able to recognize this cancer.
– Often the patient finds out that he has such changes, such as going to the ultrasound. These tumors, however, can very easily be confused with other lesions. The main problem of radiologists is that they do not see or do not want to see the patient, but focus only on the image, while the clinical symptoms are very important here, says Prof. Jarosław Ćwikła, president of the Association of Patients and Supporters of Patients with Neuroendocrine Tumors. – I am a typical example of a diagnosis error. During a laparoscopic gynecological procedure, it turned out that my peritoneum was thickly covered with tumors. I was referred to an oncologist who misdiagnosed me and was given heavy chemotherapy. It made me feel bad. I was lucky that the competent doctor finally reviewed my records and made the correct diagnosis. I was operated on. 10 years have passed since this event, I feel great and I have good results – says Danuta Cesarska.
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Proper diagnosis
– Not every doctor remembers that this disease exists and that it can be very atypically located. Meanwhile, the point is that this disease should be present in the minds of doctors – says prof. Beetroots. He also adds that this is a challenge for patients. – The disease can develop over the years without any symptoms or causing very ambiguous and common problems with the gastrointestinal tract. As a result, patients who should be under the care of a specialist try to alleviate their symptoms with over-the-counter medications. Meanwhile, a correct diagnosis and treatment are a chance to stop the disease and save life, she explains. That is why the Association of Patients and Supporters of Neuroendocrine Tumors together with the Polish Network of Neuroendocrine Tumors conducts the NET is a challenge campaign (NET – NeuroEndocrine Tumours or, as it is developed by the creators of the campaign: N – unknown, E – endocrine, T – difficult to diagnose ).
The basic tool in the diagnosis of neuroendocrine tumors is the determination of appropriate hormones in the blood. Imaging diagnostics, scintigraphic examination – SRS or positron emission tomography (PET) with Gallium are also of great importance. About 80 percent. of neuroendocrine tumors produces a characteristic protein on its surface. By administering to the patient a preparation that binds to this protein, it is possible to obtain an image of the tumor in the SRS or PET examination. – I would also like to emphasize that the biopsy is the key research here – says prof. Beetroots.
Treatment
Treatment of neuroendocrine tumors depends on the size of the tumor, its secretory functions and the presence of metastases. – The best method is to remove the tumors surgically – says prof. Kos-Kudła. For advanced lesions at diagnosis, surgery may not be possible. Then, first of all, hormone therapy in the form of somatostatin analogues is used. Prof. Ćwikła emphasizes that until recently we only knew that thanks to this therapy we manage the clinical symptoms of the disease. However, in 2014, the results of the CLARINET study were published in the prestigious New England Journal of Medicine, which showed that the somatostatin analogue by 53 percent. it also reduces the risk of disease progression or death in patients with a neuroendocrine tumor of the pancreas or intestine. Patients using this treatment live for many years without symptoms and can lead an active life. – This drug has practically no toxicity and side effects, it allows the tumor to be kept in the reins, and the patients are active in life and work – emphasizes prof. Beetroots.
A disease with many faces
The most common neuroendocrine tumors are carcinoids – gastrointestinal-pancreatic tumors. Clinical symptoms appear when it is an advanced form of metastatic neoplasm. Carcinoid tumors cause reddening of the skin, diarrhea, difficulty breathing, asthma or wheezing, palpitations, abdominal pain, and swelling.
Insulinoma is the second most common neuroendocrine tumor. It produces insulin in an uncontrolled manner, which can lead to severe reductions in blood glucose levels. The most common symptoms are headache and dizziness, disturbance in concentration, vision, speech, drowsiness, severe hunger, increased sweating, restlessness and irritability. In about 30 percent. people experience significant weight gain. Due to the non-specific and often periodic occurrence of symptoms, it is detected after several or even several years.
5 percent of neuroendocrine tumors is a gastrinoma that resembles a persistent peptic ulcer. Most often it appears as multiple nodules in the duodenal wall or as a single tumor in the pancreas. In most cases, it is a malignant tumor. It manifests as persistent diarrhea, ulceration in unusual locations (esophagus, intestine).
Another type of neuroendocrine tumor, glucagonoma, develops in the pancreas. It has the form of a single, solid lesion of large size – up to 25 cm. The first symptom may be hyperglycaemia. In addition, skin necrosis erythema, abdominal pain, nausea, diarrhea, rapid weight loss, anemia, deep vein thrombophlebitis and pulmonary embolism.
One of the rarest neuroendocrine tumors is VIP-ooma. Most commonly located in the pancreas or retroperitoneal tissue, it is characterized by diarrhea with a significant loss of potassium and bicarbonate.
Somatostatinoma is also rare. It is a single tumor located in the pancreas. It secretes a hormone that inhibits the secretion of digestive enzymes. The symptoms of the disease often include diarrhea, gallbladder enlargement, and calcium malabsorption disorders.
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