Neuroendocrine Tumor (NET) Survivorship

About Neuroendocrine Tumors (NETs)

At Penn Medicine, patients with neuroendocrine tumors receive their care from a multidisciplinary team of nationally recognized experts in the diagnosis, treatment and research of cancer.

Penn's Neuroendocrine Tumor Program treats the following:

  • Gastroenteropancreatic neuroendocrine tumors (GEP-NETs)
    • Alimentary tract (carcinoid tumors)
    • Pancreatic endocrine tumors (PETs)
  • Pheochromocytomas/paragangliomas (PHEOs)
  • Other neuroendocrine tumors (NETs)

Penn Medicine offers one of the only dedicated NET programs in the country with the combined expertise to treat both GEP-NETs and PHEOs. In addition, Penn's program is the first and only one of its kind in the mid-Atlantic region.

Penn Medicine's multidisciplinary approach to cancer diagnosis and treatment provides better outcomes and gives patients access to the most advanced treatment, surgical techniques and clinical trials.

Because navigating a cancer diagnosis and treatment options can be difficult, patients who wish to connect with a cancer specialist at Penn Medicine can speak with a cancer nurse, who can help them make an appointment with the right physician.

To connect with a cancer nurse at Penn Medicine, patients should call 800-789-PENN (7366).

About Neuroendocrine Tumors

Neuroendocrine tumors (NETs) form from cells that release hormones in response to a signal from the nervous system. Some examples of neuroendocrine tumors are carcinoid tumors, islet cell tumors, phechromocytomas and Merkel cell cancers.

Neuroendocrine tumors are often small and can be malignant (cancerous) or benign (non-cancerous). Carcinoid tumors most commonly develop in the gastrointestinal tract including the esophagus, stomach, small intestine, appendix and colon. Rarely, carcinoid tumors occur in the lungs and bronchial tissue. Pancreatic neuroendocrine tumors (PETs) typically develop in the pancreas and duodenum.

Not all NETs cause symptoms. However, because they originate from hormone producing tissues, the symptoms they cause can be linked to the release of various hormones into the blood stream causing:

  • Facial flushing
  • Diarrhea
  • Shortness of breath
  • Abdominal pain
  • Low blood sugar
  • Wheezing
  • A feeling of abdominal fullness

Read more About Neuroendocrine Tumors (NETs)

Diagnosing Neuroendocrine Tumors (NETs)

An accurate diagnosis from trusted tumor specialists is the first step in getting personalized treatment options to treat neuroendocrine tumors.

Patients who choose Penn Medicine, benefit from a multidisciplinary team of cancer and tumor specialists including gastroenterologists, radiologists, pathologists and surgeons who work together to provide a diagnosis and treatment plan designed specifically for each patient with neuroendocrine tumors.

Cancer specialists at Penn Medicine are highly experienced in using the most advanced techniques for diagnosing cancer and are actively researching better and more precise ways to detect neuroendocrine tumors.

Navigating a cancer diagnosis and treatment options can be difficult, patients who wish to connect with a cancer specialist at Penn Medicine can speak with a cancer nurse, who can help them make an appointment with the right person. Penn Medicine’s contact center has experienced cancer nurses available and ready to guide patients in finding the cancer specialist right for them.

To connect with a cancer nurse at Penn Medicine, patients should call 800-789-PENN (7366).

Read more Diagnosing Neuroendocrine Tumors (NETs)

Neuroendocrine Tumor (NET) Treatment

Penn Medicine offers one of the only dedicated neuroendocrine tumor (NET) programs in the country with the combined expertise to treat both gastroenteropancreatic neuroendocrine tumors (GEP-NETs) and pheochromocytomas and paragangliomas (PHEOs). In addition, Penn Medicine’s program is the first and only one of its kind in the region.

Following the diagnosis and staging of neuroendocrine tumors, cancer specialists at Penn’s Abramson Cancer Center develop a personalized treatment plan. Penn’s treatment options for neuroendocrine tumors include:

  • Surgery
    • Local and local-regional excision
    • Debulking surgery, including liver resection
    • Radiofrequency ablation
    • Liver transplantation
  • Chemotherapy and biologic therapies
    • Hormone therapy
      • Octreotide
      • Proton pump inhibitors (PPIs)
    • Liver-directed therapies
      • Ethanol injection
      • Chemoembolization of the hepatic artery
    • Chemotherapy
    • Targeted therapy
  • External-beam radiation therapy
  • Clinical trials
  • Other treatments
    • Integrative medicine and wellness
    • Palliative care
    • Penn Home Care and Hospice

Because navigating a cancer diagnosis and its treatment options can be difficult, patients who wish to connect with a cancer specialist at Penn Medicine can speak with a cancer nurse, who can assist in making an appointment with the right physician.

To connect with a cancer nurse at Penn Medicine, patients should call 800-789-PENN.

Read more Neuroendocrine Tumor (NET) Treatment

Neuroendocrine Tumor Survivorship

Patients with neuroendocrine tumors may require more follow-up care than other patients.

Some neuroendocrine tumor patients may require follow-up treatment using biotherapies, or other medications. Others may require more frequent imaging tests. Patients at Penn Medicine receive a personalized survivorship care plan that addresses all issues from follow-up care to the physical, emotional and financial complications that can occur long after their therapy is complete.

Survivorship programs at Penn Medicine are a distinct phase of neuroendocrine tumor care and are designed to help patients' transition from treatment to a post-treatment lifestyle.


Personalized Survivorship Care

At the end of treatment, neuroendocrine tumor patients should schedule a survivorship visit with their nurse navigator. At this time, patients are provided with a summary of the treatment received as well as a plan for follow-up care.

The survivorship care plan includes information on:

  • Potential long-term or late side effects of cancer treatment, the symptoms and treatment.
  • Recommendations for cancer screening for disease recurrence or a new cancer.
  • Psychosocial effects, including relationships and sexuality.
  • Planning follow-up visits.
  • Genetic screening for other family members.

A survivorship care plan encourages patients to review the information with their health care team and become active participants in their follow-up care.

Penn also offers neuroendocrine tumor patients a number of support programs and groups to enhance their survivorship care plans.

Oncology Navigation Specialists

Every step of cancer treatment; from a cancer diagnosis, through treatment, to forming a survivorship plan; comes with different needs and issues that should be addressed.

Oncology Navigation Specialists at the Abramson Cancer Center are available to make the patient experience as seamless as possible. As experts in navigating complex health care situations, patient support specialists serve as a consistent point of contact and a reliable source for advice, support and direction for patients and families. They can help in a variety of ways including; provide emotional support, identify resources, and ensure access to information, support services, educational programs and community resources.

Learn more about patient navigation specialists at the Abramson Cancer Center.

Survivorship Programs at Penn Medicine

Penn Medicine’s Living Well After CancerTM Program is a nationally recognized program that focuses on issues facing cancer survivors. In 2007, the Abramson Cancer Center was designated a LIVESTRONG ™ Survivorship Center of Excellence Network.  The Abramson Cancer Center is only one of eight LIVESTRONG centers in the United States, and is the only LIVESTRONG Survivorship Center of Excellence in the Philadelphia region. The program focuses on survivorship, a distinct phase of care.

Prescription for Living: The Cancer Survivorship Program at the Abramson Cancer Center at Pennsylvania Hospital at Pennsylvania Hospital, provides patients with a summary of important information about specific cancer diagnoses and treatments, as well as follow-up information and steps to take towards recovery, supportive care and education to help patients adjust to their lives as cancer survivors.

Continued Support

Penn offers cancer patients support programs and groups to enhance their survivorship care plans.

The Abramson Cancer Center and Abramson Cancer Center at Pennsylvania Hospital at Pennsylvania Hospital provide materials and host a wide range of activities for education and support to address key areas of concern including survivorship for cancer patients and their loved ones.

Focus On: Gastrointestinal Cancers and Focus On: Neuroendocrine Tumors are day-long conferences that addresses issues for patients with neuroendocrine tumors, as well as their loved ones.


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