In the medical field, some patients can wander for years before finding a diagnosis that matches their ailments. Despite certain symptoms and appointments made with various specialists, they sometimes remain with their questions for a long time, without finding answers.
This reality particularly affects patients with so-called “invisible” cancers, explain experts from the organization Neuroendocrine Cancer UK (NCUK). For this non-profit organization dedicated to supporting patients and their families, it is urgent to accelerate the diagnosis of neuroendocrine cancer, which refers to a group of cancers developing in nerve and glandular cells. The Independent returns to this phenomenon.
According to the NCUK, this disease, which affects more than 6,000 people per year in England, increased by 371% between 1995 and 2018, compared to 116% for other cancers during the same period – with the exception of non-melanoma skin cancer.
According to the charity, diagnosis takes on average four and a half years, with almost half of patients not diagnosed at first consultation and 16% having to visit the doctor more than ten times before getting a diagnosis. More than half of cases are detected at an advanced stage.
“It doesn’t look like the more well-known cancers”
There are two main types of neuroendocrine cancer: neuroendocrine tumors (NETs) and neuroendocrine carcinomas (NECs), which grow rapidly. The disease can develop in different parts of the body, such as the stomach, intestines, pancreas and lungs.
Symptoms include unexplained weight loss, fatigue, pain, diarrhea, bloating, gas, heartburn, asthma-like symptoms, skin rash, and persistent cough. According to experts, common misdiagnoses include irritable bowel syndrome, asthma or menopause.
“One of the main difficulties associated with neuroendocrine cancer is that it does not correspond to the image that many people have of cancer, explains Lisa Walker, chief executive of NCUK. It does not behave or resemble more well-known cancers and, unlike others, it does not always recover or decline, often requiring people to live with it for many years.»
This period of uncertainty is often marked by a feeling of incomprehension, as patients struggle to reconcile their disabling symptoms with normal test results. According to the specialist, these errors and diagnostic delays can “cause serious and lasting damage» and make you lose “precious time» to patients, allowing the cancer to spread without adequate treatment being prescribed.
