Gastroenteropancreatic Neuroendocrine Tumors (NET) (CP)
How We Can Help You
Neuroendocrine tumors (NETs) are abnormal cells that develop in the systems that control hormones, nerves, and other processes. NETs that arise in the digestive tract or pancreas are often grouped together and called gastroenteropancreatic neuroendocrine tumors (GEP-NETs). An older term, carcinoid tumors, refers to small intestine NETs.
Because NETs are rare, it is important to receive care from specialized teams familiar with the disease. In Stanford’s Endocrine Tumor Program — one of only a few of its kind in the U.S. — our nationally respected doctors work seamlessly together in one comprehensive clinic. You’ll have access to the most advanced diagnostic imaging, genetic testing, and treatments available, along with research to discover and prove new therapies.
What We Offer You For Neuroendocrine Tumors
- Nationally known leadership in neuroendocrine tumor (NET) research and care, including the nation’s first fellowship to train new NET physicians.
- Seamless care from experts in medical oncology, nuclear medicine, endocrinology, radiology, surgery, and cancer genetics, with a collaborative, NET-specific tumor board.
- Cutting-edge clinical research that has led to new treatments, now used worldwide, and improvements in imaging and care for diagnosing and treating NETs.
- Personalized treatment planning that incorporates genetic testing and specialized imaging equipment to detect tumor growth.
- Second opinions readily available for those diagnosed with neuroendocrine tumors who are evaluating their treatment options.
- Comprehensive support services, including a dietitian and survivorship professionals who specialize in NETs, to help you live well with this chronic disease.
Treatment for Neuroendocrine Tumors
Stanford has helped develop new therapies that dramatically boost people’s survival and symptom control while living with NETs. We helped confirm the efficacy of peptide receptor radiotherapy (PRRT), which received approval from the U.S. Food and Drug Administration (FDA) in 2018.
PRRT works like fitting a key into a lock. By delivering radiation (the key) to a special receptor (the lock) on the surface of the cell, this therapy destroys the cancer via an intravenous (IV) solution.
The right treatment for you depends on expert diagnosis and a customized treatment plan tailored to where the tumor started and the stage and grade of the disease. We’ll listen to your needs and provide the medical and support services that help you live your best quality of life with this chronic condition.
Leadership in Neuroendocrine Tumor Care:
Our team advances care for neuroendocrine tumors through our extensive research program.
Newly Diagnosed
Recurrent & Metastatic
Genetic Counseling
At Stanford, you’ll receive an integrated treatment plan that considers your medical history, genetic tests, and advanced imaging. Throughout your care, a collaborative group of neuroendocrine specialists will review your treatment plan, giving you peace of mind and a clear path forward.
We are also available to partner with the doctors in your community, so you have care that is conveniently close to home.
Surgery
Surgery is the main treatment for neuroendocrine tumors. If a tumor has not spread, surgery may remove it completely. In these cases, people often need no further treatment. We can sometimes perform surgery even for people who have large tumors or tumors in multiple parts of the body. This approach, called cytoreductive surgery if a tumor is not completely removed, is sometimes used for slower-growing tumors, like NETs.
Medical management to slow tumor growth
Today, doctors are quickly developing new treatments for neuroendocrine tumors and their symptoms. We use most of these treatments to slow tumor growth for patients with metastatic NETs (those that have spread to other parts of the body).
- Somatostatin analogues (octreotide and lanreotide) are often selected as a first choice to slow tumor growth. Somatostatin analogues are similar to a hormone. They are not chemotherapy.
- Targeted therapy blocks the spread of cancer by interfering with the molecules that help it grow. These therapies include medications like everolimus (Afinitor®) and sunitinib (Sutent®).
- Chemotherapy uses medications to destroy cancer cells and shrink existing tumors.
- Peptide receptor radiotherapy (Lu 177 dotatate, or Lutathera®) uses a protein that fits like a key in a lock to deliver small doses of radiation directly into cancer cells to destroy the tumor.
Medical management to treat symptoms from hormones
Some NETs can release hormones that cause symptoms such as facial flushing (heat and redness) or severe diarrhea. These NETs are termed “functional.” The classic example of a functional NET is called carcinoid syndrome, which occurs when a NET secretes serotonin. Using medications, we can minimize symptoms and slow down a tumor’s growth.
Somatostatin analogues (octreotide and lanreotide) are the main treatment for functional NETs. For people with severe diarrhea from carcinoid syndrome who need treatment in addition to somatostatin analogues, we can add telotristat. This new oral medication blocks the production of serotonin.
Survivorship program
For each person living with a NET, we develop a survivorship plan to support your emotional health, primary care needs, and medication side effects. Our dietitians have special expertise in gastrointestinal NETs. They also give courses on eating to relieve symptoms, such as tips on limiting serotonin-containing foods for people with carcinoid syndrome.
Active surveillance
For some slow-growing tumors, we may recommend active surveillance (watching the tumor but not yet treating it). Our team has the expertise to accurately estimate which tumors are unlikely to need treatment, thus avoiding unnecessary surgeries.
A recurrent neuroendocrine tumor is a tumor that reappears after previous treatment. NETs recur in about one-third of patients, but they tend to recur much later than other kinds of tumors. Some appear as long as 10 years or more after initial treatment. This is why your doctor may recommend monitoring for many years longer than with other types of cancer.
NETs can spread (metastasize) to other organs. The most common site for NET metastases is the liver, although tumors can also invade the lymph nodes, lungs, or bones. In addition to the therapies above, we deliver focused treatments to destroy tumor cells directly or block blood flow to certain tumors.
If a tumor recurs, your doctor will reassess your needs and develop a new treatment plan tailored to the tumor location, grade, and stage and your other medical conditions. Your treatment might include:
- Surgery to remove or debulk (reduce) tumors
- Somatostatin analogues (octreotide and lanreotide) to slow tumor growth with therapies that are similar to a hormone and are not chemotherapy
- Targeted therapy, such as everolimus (Afinitor®) and sunitinib (Sutent®), to block the spread of cancer by interfering with the molecules that help it grow
- Chemotherapy to destroy cancer cells and shrink existing tumors
- Peptide receptor radiotherapy (Lu 177 dotatate, or Lutathera®), using a protein that fits like a key in a lock to deliver small doses of radiation directly into cancer cells to destroy the tumor
- External beam radiation therapy:
- 3D conformal radiation therapy
- Intensity-modulated radiation therapy (IMRT)
- Stereotactic ablative radiotherapy (SABR/SBRT)
- 3D conformal radiation therapy
- Interventional radiology:
- Radiofrequency ablation
- Chemoembolization of the hepatic artery to inject anticancer medication and an artery-blocking drug into the liver’s main artery
- Radioembolization of the hepatic artery to inject small beads coated with radiation, which block the liver’s main artery and deliver radiation to the tumors
- Radiofrequency ablation
The cancer genetics team in Stanford’s Endocrine Tumor Program has special training in inherited conditions associated with NETs. Some NETs result from a hereditary syndromes such as multiple endocrine neoplasia type 1 (MEN1), multiple endocrine neoplasia type 2 (MEN2), von Hippel-Lindau (VHL), and neurofibromatosis (NF). Our counselors will review your family history to determine if genetic testing is appropriate for you or other family members.
At Stanford, you’ll receive an integrated treatment plan that considers your medical history, genetic tests, and advanced imaging. Throughout your care, a collaborative group of neuroendocrine specialists will review your treatment plan, giving you peace of mind and a clear path forward.
We are also available to partner with the doctors in your community, so you have care that is conveniently close to home.
Surgery
Surgery is the main treatment for neuroendocrine tumors. If a tumor has not spread, surgery may remove it completely. In these cases, people often need no further treatment. We can sometimes perform surgery even for people who have large tumors or tumors in multiple parts of the body. This approach, called cytoreductive surgery if a tumor is not completely removed, is sometimes used for slower-growing tumors, like NETs.
Medical management to slow tumor growth
Today, doctors are quickly developing new treatments for neuroendocrine tumors and their symptoms. We use most of these treatments to slow tumor growth for patients with metastatic NETs (those that have spread to other parts of the body).
- Somatostatin analogues (octreotide and lanreotide) are often selected as a first choice to slow tumor growth. Somatostatin analogues are similar to a hormone. They are not chemotherapy.
- Targeted therapy blocks the spread of cancer by interfering with the molecules that help it grow. These therapies include medications like everolimus (Afinitor®) and sunitinib (Sutent®).
- Chemotherapy uses medications to destroy cancer cells and shrink existing tumors.
- Peptide receptor radiotherapy (Lu 177 dotatate, or Lutathera®) uses a protein that fits like a key in a lock to deliver small doses of radiation directly into cancer cells to destroy the tumor.
Medical management to treat symptoms from hormones
Some NETs can release hormones that cause symptoms such as facial flushing (heat and redness) or severe diarrhea. These NETs are termed “functional.” The classic example of a functional NET is called carcinoid syndrome, which occurs when a NET secretes serotonin. Using medications, we can minimize symptoms and slow down a tumor’s growth.
Somatostatin analogues (octreotide and lanreotide) are the main treatment for functional NETs. For people with severe diarrhea from carcinoid syndrome who need treatment in addition to somatostatin analogues, we can add telotristat. This new oral medication blocks the production of serotonin.
Survivorship program
For each person living with a NET, we develop a survivorship plan to support your emotional health, primary care needs, and medication side effects. Our dietitians have special expertise in gastrointestinal NETs. They also give courses on eating to relieve symptoms, such as tips on limiting serotonin-containing foods for people with carcinoid syndrome.
Active surveillance
For some slow-growing tumors, we may recommend active surveillance (watching the tumor but not yet treating it). Our team has the expertise to accurately estimate which tumors are unlikely to need treatment, thus avoiding unnecessary surgeries.
close Newly Diagnosed
A recurrent neuroendocrine tumor is a tumor that reappears after previous treatment. NETs recur in about one-third of patients, but they tend to recur much later than other kinds of tumors. Some appear as long as 10 years or more after initial treatment. This is why your doctor may recommend monitoring for many years longer than with other types of cancer.
NETs can spread (metastasize) to other organs. The most common site for NET metastases is the liver, although tumors can also invade the lymph nodes, lungs, or bones. In addition to the therapies above, we deliver focused treatments to destroy tumor cells directly or block blood flow to certain tumors.
If a tumor recurs, your doctor will reassess your needs and develop a new treatment plan tailored to the tumor location, grade, and stage and your other medical conditions. Your treatment might include:
- Surgery to remove or debulk (reduce) tumors
- Somatostatin analogues (octreotide and lanreotide) to slow tumor growth with therapies that are similar to a hormone and are not chemotherapy
- Targeted therapy, such as everolimus (Afinitor®) and sunitinib (Sutent®), to block the spread of cancer by interfering with the molecules that help it grow
- Chemotherapy to destroy cancer cells and shrink existing tumors
- Peptide receptor radiotherapy (Lu 177 dotatate, or Lutathera®), using a protein that fits like a key in a lock to deliver small doses of radiation directly into cancer cells to destroy the tumor
- External beam radiation therapy:
- 3D conformal radiation therapy
- Intensity-modulated radiation therapy (IMRT)
- Stereotactic ablative radiotherapy (SABR/SBRT)
- 3D conformal radiation therapy
- Interventional radiology:
- Radiofrequency ablation
- Chemoembolization of the hepatic artery to inject anticancer medication and an artery-blocking drug into the liver’s main artery
- Radioembolization of the hepatic artery to inject small beads coated with radiation, which block the liver’s main artery and deliver radiation to the tumors
- Radiofrequency ablation
close Recurrent & Metastatic
The cancer genetics team in Stanford’s Endocrine Tumor Program has special training in inherited conditions associated with NETs. Some NETs result from a hereditary syndromes such as multiple endocrine neoplasia type 1 (MEN1), multiple endocrine neoplasia type 2 (MEN2), von Hippel-Lindau (VHL), and neurofibromatosis (NF). Our counselors will review your family history to determine if genetic testing is appropriate for you or other family members.
close Genetic Counseling
Clinical Trials for Neuroendocrine Tumors
Clinical trials are research studies that evaluate a new medical approach, device, drug, or other treatment. As a Stanford Health Care patient, you may be eligible to participate in open clinical trials. Open trials refer to studies that are currently recruiting participants or that may recruit participants in the near future. Closed trials are not currently enrolling, but similar studies may open in the future.
Stanford’s NET team runs an extensive clinical research program to test new therapies and new forms of imaging for people with tumors. We are investigating new antibodies, chemotherapies, and radiolabeled peptides that target specific cancer cells.
Our doctors sit on national committees that help determine priorities for clinical trials and may offer patient access to trials. Our extensive NET database contains clinical information on 2,000 people, linked to tissue samples. With this database, we can better predict the course of the disease and the best treatment options. Ask your doctor or clinical trials coordinator about available trials that may be additional options for your care.