Since neuroendocrine tumors (NETs) are rare, finding a care team with experience treating them is especially important. At MD Anderson, we have physicians who specialize in treating neuroendocrine tumors. This gives them incredible experience when designing treatment plans for patients diagnosed with a NET.
Many of these doctors also conduct research in NETs and are working to develop new treatments for these tumors. As a result, MD Anderson has a large number of clinical trials for NET patients. These offer new treatments that may not be available anywhere else.
NET treatment plans
Regardless of location, the preferred treatment for most NETs is surgery to remove the entire tumor. This may cure the patient.
Most surgeries meant to cure NETs are performed on patients whose disease has not metastasized, or spread. In some cases, though, patients whose disease has metastasized can be effectively cured by surgery that removes the primary tumor and the metastases.
For the vast majority of patients, it is not possible to remove the entire tumor through surgery. This may be because it is located in a spot that is hard to reach surgically or because it has spread in such a way that the metastases cannot be removed. In these cases, doctors may still perform surgery to remove part of the tumor. This can help relieve symptoms.
If all of the patient’s tumors cannot be removed through surgery, a complete cure is not possible. Instead, the disease is managed through treatments designed to slow or stop its progression.
The treatments and treatment plans for a NET depend on many factors. These include the location of the tumor, whether it is functional or non-functional, and how advanced the disease is.
Since NETs can be slow growing, doctors may recommend active surveillance. With this approach, the patient undergoes regular tests, including blood, urine and imaging exams, to see if the tumor is growing. No treatments are given unless and until the disease progresses. This is a popular approach for older patients who might find surgery or other therapies difficult to bear.
Many neuroendocrine tumors can be removed with surgery, especially if they are diagnosed before they have metastasized, or spread beyond the main tumor and nearby lymph nodes. If the surgeon cannot remove the entire tumor, only part of it may be removed in order to help treat a patient’s tumor-related symptoms.
The patient’s surgical options will depend on the tumor’s location. The procedures are essentially identical to surgeries for other types of tumors at that site. For example, if a patient has lung cancer, the surgery to treat that tumor is the same, regardless if it is a neuroendocrine tumor or not. To see the surgical options for neuroendocrine tumors at a particular site, learn more about that specific cancer.
Chemotherapy works by killing fast-growing cells, including cancer cells. Learn more about chemotherapy.
Traditional chemotherapy works by killing cells that multiply quickly, whether normal or cancerous. Targeted therapy, also called precision medicine, is different. It works by stopping or slowing the growth or spread of cancer.
This happens on a cellular level. Cancer cells need specific molecules (often in the form of proteins) to survive, multiply and spread. These molecules are usually made by the genes that cause cancer, as well as the cells themselves.
Targeted therapies are designed to interfere with, or target, these molecules or the cancer-causing genes that create them. Learn more about targeted therapy.
Radiation therapy uses focused beams of energy to destroy cancer cells. There are several ways doctors can deliver this radiation to the tumor. Learn more about radiation therapy.
Peptide radionuclide therapy
Peptide radionuclide therapy is a method of delivering cancer-killing radiation to a tumor. Instead of using a beam of energy, a radioactive chemical is combined with another chemical that attaches to cancer cells. The patient receives this combined liquid through an IV.
Somostatin analogs are drugs that slow tumor growth and help relieve cancer symptoms. While they were initially used only for functional NETs (NETs that produce hormones) more recent studies show they can work on non-functional NETs as well.
When NETs metastasize, or spread beyond their primary location, they often move to the liver. Liver directed therapies use a catheter sent through an artery to deliver treatments directly to the metastasis. Treatments include chemotherapy and the use of radioactive beads that can kill cancer cells. Doctors also can use the catheter to heat and kill blood vessels that feed the tumor.
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BY Devon Carter
From your growth to your digestion, your hormones regulate many basic functions within your body. These chemical messengers are produced and released into the blood by neuroendocrine cells. If the cells malfunction, they can develop into a neuroendocrine tumor. Because neuroendocrine cells can be found throughout the body, these tumors can, too. But they’re most commonly found in the gastrointestinal tract (GI) at the rectum, the small bowl and the pancreas.
How can surgery benefit a patient with a neuroendocrine tumor in the gastrointestinal tract?
20% of patients have what’s called a functional tumor. That means they experience symptoms linked to hormones. For example, a tumor may produce insulin and result in low blood sugar. Or, a tumor can produce glucagon, which can lead to diabetes or, if it produces gastrin, cause ulcers.
Removing even a portion of a functional tumor can improve quality of life by relieving some hormone-related symptoms. And in some cases where we can’t remove the entire tumor, surgery can extend a patient’s life.
Is surgery done before or after chemotherapy for patients with neuroendocrine tumors?
It depends. Most neuroendocrine tumors are slow-growing, so we have time to evaluate all treatment options. At MD Anderson, our multidisciplinary team works together to determine the best treatment plan, including which therapies are needed and when.
Because patients can live years after a neuroendocrine tumor diagnosis, we’re mindful about the order of treatments. One treatment’s effectiveness can make another more successful. And some treatment side effects can make other treatments more challenging. Keeping surgery as a treatment option for every patient is helpful, especially because chemotherapy isn’t effective for everyone. Don’t be surprised if surgery is our recommended first-line treatment.
What are the types of surgery for a pancreas neuroendocrine tumor?
There are three approaches, and the right one for you depends on your specific diagnosis, the location of the tumor and your overall health.
If the tumor is on the head of the pancreas, you’ll most likely receive a Whipple procedure. A surgeon removes the head of the pancreas, the distal bile duct, the gallbladder, regional lymph nodes, and the duodenum, which connects the small intestine to the stomach.
If the tumor is in the tail or body of the pancreas, we’ll remove that area of the organ with an approach called a distal pancreatectomy.
Other times, we’re able to remove only the tumor and a small amount of the surrounding healthy tissue through enucleation. This approach allows us to preserve the pancreas and limit long-term side effects. For example, losing a larger portion of your pancreas with a Whipple or distal pancreatectomy can cause or worsen diabetes, requiring you to take artificial insulin and possibly follow a low-sugar, low-carbohydrate diet.
All three procedures can be done either minimally invasively or in an open fashion. It’s dependent on if and where the cancer has spread, as well as if we see signs of the cancer cells invading the blood vessel.
How is a small bowel neuroendocrine tumor treated with surgery?
For a small bowel neuroendocrine tumor, we perform open surgery, which means we make a larger incision down your abdomen to allow for a full view of your organs. That’s because 30% to 45% of patients have tiny tumors throughout the small bowel that can’t be detected through the small incisions of a minimally invasive approach. We feel for the tumors through an exploration that only comes with an open surgery.
Unfortunately, we see patients who come to MD Anderson with a recurrence only a few years after their initial surgery elsewhere because something was missed with the minimally invasive approach. These tumors are rare, and many surgeons out in the community don’t have the experience with these complexities. That’s the benefit of coming to a cancer center like MD Anderson where we have surgeons who specialize in treating your specific type of cancer and see hundreds of cases a year and who work with medical oncologists and other experts who also specialize in treating your disease.
Is surgery an option if a neuroendocrine tumor has spread?
It’s important to understand that a neuroendocrine tumor in the pancreas isn’t the same as pancreatic cancer. Even though surgery isn’t usually an option for advanced pancreatic cancer, it can be beneficial for patients with advanced pancreas neuroendocrine tumors.
When they occur in the gastrointestinal tract, neuroendocrine tumors most commonly spread to the liver. Although the surgery becomes more complex, it can still be an option. We use a tissue-sparing approach to remove only the tumor and little surrounding tissue. This helps maintain the patient’s liver function for long as possible, which is important because you’re more likely to receive other treatments for the tumors in the liver. But with this tissue-sparing approach, you may need the same surgery in the future, if the cancer returns.
Does the surgery leave a scar?
You’ll have a scar on your stomach, but it will vary on which procedure you receive. Patients undergoing a minimally invasive approach will have five or six smaller incisions plus a slightly larger opening to allow the tumor to be removed. Patients undergoing an open surgery will have a longer vertical incision down the stomach. If the cancer has spread to the liver, we’ll make that vertical incision plus it’ll hook toward your right, in the shape of a J.
What is recovery like for patients who undergo surgery for a neuroendocrine tumor in the GI tract?
At MD Anderson, our patients typically recover in the hospital for few days to a week. How soon you get to leave the hospital depends on how quickly your bowel function comes back and how productive it is. There’s data that shows patients who walk after surgery can speed up that recovery. Our patients often receive prehabilitation to ease their recovery. Prior to going to the operating room, they receive guidance on nutrition and fitness so that when we ask them to take a walk a few hours after their surgery, they're prepared.
It’s hard work, but we need to all be on the same page and be ready to take this head on as a team. If we’re going to help you successfully overcome the cancer, you have to get yourself in that frame of mind rather than take it lying down – literally.
What’s your advice for someone newly diagnosed with a neuroendocrine tumor?
When deciding where to receive care for a neuroendocrine tumor, it’s important to know these tumors are rare. To ensure you get the best possible outcome, expertise matters. And the number of surgeries a doctor performs is just part of the picture. A specialized cancer center like MD Anderson will have the resources to support you throughout your cancer experience, from a pathologist specializing in your tumor type to cutting-edge clinical trials. Those resources allow us to personalize your care, so that you’re able to have the best possible results.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.