Neuroendocrine tumors (NETs) form in cells that interact with the nervous system or in glands that produce hormones. These cells, called neuroendocrine cells, can be found throughout the body, but NETs are most often found in the abdomen, especially in the gastrointestinal tract.
here are quite a few types of this disease, and it can show up in many places in your body.
Your symptoms may depend on where your tumor is growing and what kind it is. Learn as much as you can about your own type of NET, so you can be a confident partner with your doctor when you make decisions on a treatment plan.
While all this is going on, don’t neglect your emotional needs. Your doctor can tell you how to find a support group where you can talk to others who are going through the same things you are. And feel free to open up to your friends and family about how you’re doing. They know you best and can be a huge source of support.
The first thing you want to find out about your condition is where your tumor is located. NETs grow in cells that make hormones — chemicals that help control different actions in your body, like hair growth, your sex drive, and even your mood. A neuroendocrine tumor can grow in spots like your pancreas, a gland in your belly. It can also happen in your stomach, intestines, or lungs.
The tests and procedures you might undergo to diagnose a neuroendocrine tumor will depend on where your tumor is located in your body. In general, tests might include:
- Physical exam. Your doctor may examine your body to better understand your signs and symptoms. He or she may feel for swollen lymph nodes or look for signs that a tumor is producing excess hormones.
- Tests to look for excess hormones. Your doctor may recommend testing your blood or your urine for signs of excess hormones that are sometimes produced neuroendocrine tumors.
- Imaging tests. You might undergo imaging tests, such as ultrasound, CT and MRI, to create pictures of your tumor. For neuroendocrine tumors, pictures are sometimes created using positron emission tomography (PET) with a radioactive tracer that’s injected into a vein.
- Procedures to remove a sample of cells for testing (biopsy). To collect the cells, the doctor might insert a long, thin tube with a light and a camera on the end into your lungs (bronchoscopy), your esophagus (endoscopy) or your rectum (colonoscopy), depending on your situation. Sometimes, collecting a tissue sample requires surgery.
The treatment options for your neuroendocrine tumor will depend on the type of tumor, its location, and whether you’re experiencing signs and symptoms of excess hormones produced the tumor.
In general, neuroendocrine tumor treatment options might include:
- Surgery. Surgery is used to remove the tumor. When possible, surgeons work to remove the entire tumor and some of the healthy tissue that surrounds it. If the tumor can’t be removed completely, it might help to remove as much of it as possible.
- Chemotherapy. Chemotherapy uses strong drugs to kill tumor cells. It can be given through a vein in your arm or taken as a pill. Chemotherapy might be recommended if there’s a risk that your neuroendocrine tumor might recur after surgery. It might also be used for advanced tumors that can’t be removed with surgery.
- Targeted drug therapy. Targeted drug treatments focus on specific abnormalities present within tumor cells. By blocking these abnormalities, targeted drug treatments can cause tumor cells to die. Targeted drug therapy is usually combined with chemotherapy for advanced neuroendocrine tumors.
- Peptide receptor radionuclide therapy (PRRT). PRRT combines a drug that targets cancer cells with a small amount of a radioactive substance. It allows radiation to be delivered directly to the cancer cells. One PRRT drug, lutetium Lu 177 dotatate (Lutathera), is used to treat advanced neuroendocrine tumors.
- Medications to control excess hormones. If your neuroendocrine tumor releases excess hormones, your doctor might recommend medications to control your signs and symptoms.
- Radiation therapy. Radiation therapy uses powerful energy beams, such as X-rays and protons, to kill tumor cells. Some types of neuroendocrine tumors may respond to radiation therapy. It might be recommended if surgery isn’t an option.