Do you often feel tired, have stomach aches, or have unexplained discomfort? We often dismiss these things as normal. But sometimes, behind these minor symptoms, there may be a rare but important condition that we should be aware of. One such, less common but important condition is neuroendocrine tumors, or as we say in English, `Neuroendocrine Tumors (NETs).` So today, let's talk about it in simple terms.
What are these neuroendocrine tumors (NETs)?
Simply put, this is a rare type of tumor that forms in our bodies. These start from our 'neuroendocrine cells'. Now you're probably wondering what kind of cells these are. What's so amazing is that these cells have both the properties of nerve cells and the properties of endocrine cells, which produce hormones. This means that these cells can receive messages from the nervous system and release hormones into the bloodstream in response.
These neuroendocrine cells are found in many places in our body. They are most commonly found in places like the lungs, stomach, pancreas, and intestines. So, when for some reason these cells start dividing and multiplying uncontrollably, a tumor forms. Many of these tumors are malignant, meaning they can become cancerous.
These tumors are very different from each other. Some grow very slowly, while others grow rapidly. Also, their symptoms and treatments vary greatly depending on the location and nature of the tumor.
What are the main types of these nuts?
Doctors classify these tumors in two main ways. One is based on whether they produce hormones or not.
- Functional NETs: These types of NETs produce hormones. So, when the hormone in question increases in the body, these people may experience symptoms such as sudden flushing, sweating, and bloating.
- Non-functional NETs: These types of NETs do not produce hormones. So, they may not have any symptoms in the early stages. Symptoms only appear when the NETs grow, put pressure on the organ they are located in, or interfere with its function.
In addition, these tumors are also classified according to where they form on the body. These are the most common types.
| Nut Type (NET Type) | Simple explanation |
|---|---|
| Gastrointestinal NETs (GI-NETs) | These are the most common type. They form in our digestive system, such as the intestines, rectum, or appendix. They were previously called 'carcinoid tumors'. |
| Lung NETs (Lung NETs) | These are the second most common type. They occur in the lungs or bronchi. They were also previously called 'carcinoid tumors'. |
| Pancreatic NETs (Pancreatic NETs - P-NETs) | These tumors that form in our pancreas are considered a type of pancreatic cancer. They are the third most common type. |
In addition to these three main locations, these tumors can also rarely develop in places like the thyroid gland, parathyroid glands, pituitary gland, and adrenal glands.
How common is this disease?
Worldwide, this disease affects about 6 out of 100,000 people . This means that it is a very rare disease. However, the number of people diagnosed with this disease has increased slightly in recent years. This may be because advanced diagnostic tests now allow these tumors to be detected earlier and more easily.
Although this disease can affect people of any age, it is very rare in children and young adults. It is usually most common in people between the ages of 50 and 60 .
What are the symptoms of this disease?
This is the biggest challenge. Often, these tumors do not cause any symptoms until they grow large enough to affect nearby organs. Even when symptoms do occur, they vary depending on the location of the tumor. Also, these symptoms are so similar to those of other common diseases that they can be easily mistaken for other conditions.
These are some of the symptoms that can commonly be seen:
- Fatigue
- Stomach ache
- Diarrhea
- Nausea and vomiting
- Difficulty breathing
- Cough (sometimes with blood)
The most important thing is, don't be afraid that you have this type of cancer just because you have these symptoms. These can be symptoms of many other common diseases. However, if these symptoms persist or do not improve, be sure to see your doctor for advice.
Why do these tumors form? What are the risk factors?
Doctors still don't know exactly why these neuroendocrine cells suddenly start dividing uncontrollably. That means they don't know the exact cause yet.
However, it has been found that people with certain rare, inherited genetic conditions (syndromes) are at increased risk of developing these tumors. This means that the condition can be caused by changes (mutations) in certain genes.
- Multiple Endocrine Neoplasia (MEN): This condition causes tumors to form in various glands and organs. People with the condition, called MEN type 1 (MEN1), are particularly at risk of developing pancreatic tumors (P-NETs).
- Von Hippel-Lindau syndrome: This condition increases the risk of developing cancer and common tumors in various parts of the body.
- Neurofibromatosis type 1: In this condition, tumors form on the skin and nerves.
- Tuberous sclerosis complex: This can cause tumors to form anywhere in the body, especially in the brain.
- Cowden syndrome: This condition also increases the risk of developing tumors and some types of cancer.
How to diagnose the disease? (Diagnosis)
As we discussed earlier, the symptoms of this condition are so general, it can take a while to diagnose. If your doctor suspects this, they will order various tests depending on where they think the tumor may be.
| Test method | What is being done |
|---|---|
| Biochemical tests | Your blood or urine sample will be tested to look for levels of a certain hormone or protein. If you have a functional NET, these tests can detect its signs. |
| Imaging tests | Tests such as CT scans, MRI scans, and X-rays can see tumors inside the body. A PET scan can also see if the cancer has spread. |
| Endoscopy | A tube with a camera attached is passed into the body to check for tumors. If necessary, a small piece of tissue can be taken at the same time. Depending on the location of the tumor, this can be done in the stomach (esophagogastroduodenoscopy) or the large intestine (colonoscopy). |
| Biopsy | This is the main test that confirms the diagnosis. A small piece of tissue is taken from the tumor and examined under a microscope to see if there are cancer cells. This can also tell the type of tumor and how fast it is growing. |
What is the stage and grade of a tumor?
Once it is confirmed that you have this disease, the doctor will discuss its stage and grade.
- Stage: This refers to how far the cancer has spread. It is usually graded from stage 1 to 4. The lower the number, the smaller the tumor and the less it has spread. Stage 4 usually means the cancer has spread to distant parts of the body (metastatic).
- Grade: This refers to how abnormal the cells look under a microscope and how quickly they divide. Grades 1 and 2 (Well-differentiated) tumors grow slowly, while grade 3 (Poorly differentiated) tumors grow rapidly.
Talk to your doctor to find out how this stage and grade affect your condition.
What are the treatments?
The treatment method depends on many factors, such as the type of tumor you have, its size, whether it has spread, and your overall health.
Surgery is the main and most commonly used treatment for this. If the tumor can be completely removed surgically, the chances of cure are high.
However, if the tumors are large or have spread to other areas, other treatment methods may be required.
- Somatostatin analogs: These are a type of medication that stops the body from producing too much of the hormone. They can reduce symptoms and control tumor growth.
- Chemotherapy:Powerful drugs that kill cancer cells.
- Targeted therapy: These drugs target specific genes or proteins found only in cancer cells and attack them, thus causing less damage to healthy cells.
- Radiation therapy: Specific radiation treatments are used for this. For example, a method called `peptide receptor radionuclide therapy (PRRT)` uses a radioactive substance to target hormone-producing tumors and destroy them.
How to live with this disease?
When you find out you have NETs, you may have many questions. Can this be cured? What will my future be like?
The prognosis for this disease depends on several factors. These include the type of tumor, whether it has spread, and how well it responds to treatment. On average, the five-year survival rate after diagnosis is about 39%.
But don't be alarmed by these statistics. These are just averages. If the tumor is detected before it has spread, the survival time can be as high as 30 years. Therefore, the best person to know exactly about your situation is your doctor.
Finishing treatment doesn't mean everything is over. Because these tumors grow very quickly and can recur after treatment, your doctor will monitor you for years.
How can you take care of yourself?
This disease and its treatments can have a profound impact on your body and mind.
- Join support groups: Fighting cancer alone is hard. Especially when you have a rare disease like this, it can be hard to find people who understand your pain. Ask your medical team about support groups for people with this condition.
- Eat a nutritious diet: Side effects of treatment can cause loss of appetite. Consult a dietitian for advice on foods that will help maintain your energy levels.
- Get mental support: This journey is not as easy as you think. If you are feeling emotionally overwhelmed, don't be ashamed to seek help from a mental health professional.
- Be careful with alcohol consumption: Alcohol can worsen some symptoms, so consult your doctor about alcohol consumption.
When should I see the doctor?
If you have NET, be aware of any changes in your body. In particular, if you experience sudden flushing, abdominal distension, or wheezing, these could be signs of a condition called carcinoid syndrome. In such cases, inform your doctor immediately.
Also, if your symptoms worsen, or if the side effects of treatment are difficult to tolerate, seek medical advice.
When should you go to the Emergency Treatment Unit (ETU)?
There are cases where NETs can affect the heart. If you experience unusual swelling in your legs or ankles, and you suddenly feel short of breath, go to the nearest hospital's Emergency Department (ETU) immediately.
Finally, it's normal to have a lot of questions when you learn about a rare disease like this. Talking openly with your doctor and asking all your questions can go a long way in helping you take control of your health.
Take-Home Message
- Neuroendocrine tumors (NETs) are a rare type of tumor that starts in cells related to both our nervous and hormonal systems.
- Because common symptoms such as stomach ache, fatigue, and bloating can occur, it can take time to diagnose the disease.
- Although many of these tumors grow naturally, many of them are cancerous.
- Treatment options depend on the type of tumor, its size, and how far it has spread, with surgery being the main treatment.
- If symptoms persist or you notice any unusual changes, never ignore it and see your doctor immediately.
💬 Comments (0)
No comments have been posted yet. Add your comment here for the first time.
Add your comment