Today, physicians have many options for treating neuroendocrine tumors (NETs). Choosing the right therapies for you can be complex. There is no one-size-fits-all approach. To get the best possible outcome, we tailor your care to you.
Fred Hutchinson Cancer Center is a specialized center for providing care for people with NETs. We recognize that NETs are a long-term, chronic illness. Our NET specialists work closely with you, your family and each other throughout your journey to restore you to health. We provide all standard therapies for NETs and offer you access to the latest innovations through clinical trials.
NET treatment can vary widely from person to person. Often, we have many options to choose from. For you, options may include surgery, chemotherapy, targeted therapies, peptide receptor radionuclide therapy, medicines to control excess hormones, radiation therapy or special therapies for liver NETs. Not everyone needs all these. We select and combine treatments to fit your unique case.
As you go through treatment, your needs evolve, so your care at Fred Hutch evolves too. For instance, your care team helps to relieve any symptoms or side effects you have. We may suggest adding a new therapy. Even after your NET treatment is complete, we keep seeing you to protect your health over the long term.
NETs treatment at Fred Hutch is highly customized to meet each patient’s needs.
Your Fred Hutch medical oncologist works alongside an entire group of NET specialists. They include other medical oncologists, surgeons, radiation oncologists and nuclear medicine specialists. These physicians also get input from pathologists and interventional radiologists. They are joined by advanced practice providers, nurses, supportive care providers and researchers looking for better ways to treat this disease.
Every week, this team gathers in a meeting called a tumor board. Together, dozens of team members discuss patients’ treatment plans. This approach means each patient benefits from the experience of the whole group.
Your physician, supported by the larger team:
Your medical oncologist will walk you and your caregiver through the treatment plan that the tumor board recommends. You will have a chance to discuss your personal preferences and options, and you will decide together how to move forward.
The treatment plan we design for you depends on many factors, including:
NETs can arise in many different organs and affect people in different ways. There is no single way to treat everyone. Broadly speaking, however, patients have surgery to remove their tumors when possible. Treatment often includes chemotherapy, targeted therapy or both. If your NET makes excess hormones, we have medicines to help with this too. Some types of NETs respond to radiation therapy or peptide receptor radionuclide therapy. There are other treatments for NETs in the liver specifically.
Some people with NETs do not need any active treatment for years. But they should be carefully monitored over time. This is called watchful waiting.
At Fred Hutch, our standard always involves caring for you as a whole person. We help you get relief from symptoms and side effects. We also provide many other forms of support, like integrative medicine, nutrition counseling and emotional support.
Patients here have the option to receive promising, new NET therapies that you can get only through a clinical trial. Many people come to Fred Hutch for access to these studies. Your care team will tell you about studies that might be right for you so you can consider joining.
Certain diseases passed down in families can increase the risk for NETs. If you may have one of these diseases, your NET team can refer you to Fred Hutch’s Clinical Genetics and Genetic Counseling Service for help understanding what this means for you and your family.
This is also called observation or active surveillance. It means you and your physician closely monitor your health for any changes, like faster tumor growth or the start of symptoms. For some people, treatment may not be needed for a long time.
Watchful waiting can sound like an odd concept. But for NET patients who have slow-growing tumors and no symptoms, immediate treatment provides no benefit, according to research. Plus, delaying treatment can spare you from any difficult side effects of treatment that could occur.
During watchful waiting, you visit your physician for exams and have blood tests and imaging tests on a regular schedule. The schedule depends on your individual needs.
In between scheduled visits, you are not on your own. We are here. If you notice health changes, you can always call us. In fact, we encourage you to call so we can check whether you do need active treatment.
Some people do not need active treatment for many years. The main benefits of watchful waiting are:
Hormone-related symptoms can range from diarrhea to high or low blood sugar to skin rash to anxiety. Your care team works closely with you to identify and relieve any symptoms you have. We have options that can help. These include the medicines octreotide and lanreotide. Both are given as shots (injections).
Chemotherapy uses medicines to kill fast-growing cells (like cancer cells) or to keep them from dividing (which is how cancers grow).
Your medical oncologist prescribes your chemotherapy (and other medicine-based treatments) and sets your treatment schedule. For NETs, chemotherapy is often given in pill form but at times may be given by infusion (put into a vein through an intravenous line). Your oncologist will determine what is best based on the features of your disease and your preferences. They will explain your treatment schedule and any side effects in detail.
Who Needs Chemotherapy?
You might have chemotherapy if:
Targeted therapies work in one of these ways:
Targeted therapies are usually given as a pill that you take at home. Some are given by infusion in repeating cycles. Such treatments include everolimus and sunitinib.
Researchers at Fred Hutch are working to find more ways to target NETs and develop new therapies.
PPRT is a way to get radiation straight to your tumor cells.
Certain NETs respond to PRRT with lutetium-177 dotatate. The drug dotatate targets tumor cells in your body. It delivers the radioactive part, lutetium 177 (Lu-177), into these cells. There, the Lu-177 damages the cells, causing cell death.
Physicians use this treatment for some advanced gastrointestinal and pancreatic NETs and some lung carcinoids. It is sometimes used for other types of NETs, such as pheochromocytomas and paragangliomas.
Lu-177 dotatate is given by infusion. Liquid medicine is put into a vein through an intravenous (IV) line. It is done every eight weeks for four cycles.
The U.S. Food and Drug administration approved this treatment for NETs in 2018. We offer it at our South Lake Union clinic.
Radiation therapy uses high-energy rays to kill cancer cells. A radiation oncologist decides on the type, dose and schedule of your treatment.
Usually this means a machine aims rays precisely at your tumor. This is external-beam radiation therapy. You get this treatment daily, Monday through Friday, for several weeks.
If you have a NET that responds to radiation therapy, your team might recommend this form of treatment:
If NETs have spread to your liver, several options may help control tumors there.
For Fred Hutch patients, these are done at UW Medical Center - Montlake:
While you are in active treatment, your NET care team sees you regularly for exams and tests to check:
We refine your treatment plan based on the best scientific evidence as well as how your disease responds, how you feel and what you prefer.
Along with treating your NET, Fred Hutch provides a range of services to support you and your caregiver, before, during and after treatment. This is part of how we take care of you — not just your disease.
From dietitians to chaplains, we have experts who specialize in caring for people with cancer. We understand this may be one of the most intense and challenging experiences you and your family ever go through. We are here to provide the care you need.
Learn more about Supportive Care
If your loved one is receiving care for a NET, there are many ways you can help. Caregiving during active treatment for a NET often means doing tasks like these:
Even if you are not on active treatment, it is still important to get follow-up care on a regular basis. At follow-up visits, you will see the same Fred Hutch team who treated your NETs. They will check your overall health and look for signs that your cancer may be changing.
Your team will also help with any long-term side effects from prior treatment.