Neuroendocrine tumors (NETs)

From the moment you arrive, you’ll notice the difference with the Penn Neuroendocrine Tumors (NET) Program. We immediately talk about your future and we don’t rule out any options.

Some NETs can be cured with surgery. But others require a series of therapies, often spread over years with breaks in between. We help you continue to work, enjoy hobbies and spend time with family. We value the close relationships that form as we provide long-term care. As we like to say, it’s not uncommon to grow old together.

What is a neuroendocrine tumor?

All NETs start in neuroendocrine cells. Like nerve cells, these cells receive messages, and like endocrine cells, they can release hormones. While neuroendocrine cells are found throughout the body, they’re concentrated in some spots.

The types of neuroendocrine tumors vary widely in location, background and behavior. Some NETs run in families, but most don’t. NETs don’t always turn cancerous, but they can. When they do, they still tend to spread more slowly than other cancers. That pace allows doctors to turn to a range of helpful options.

Given their unique features, NETs require a particular approach within a cancer center. These tumors are best treated in a specialized program, with options and strategies just for NETs.

Neuroendocrine tumor symptoms

Symptoms from neuroendocrine tumors depend on their type, the extent of the disease and how they act.

Neuroendocrine tumors may not cause noticeable signs right away. When they do, they may have grown larger or turned cancerous and spread. They may block the GI tract, interfere with the liver or push on sensitive structures.

At other times, symptoms come from NETs releasing hormones. These effects may draw attention to the tumor. But like symptoms from tumor growth or spread, they can overlap with many other conditions. It’s not uncommon for people to come to us having spent several years seeking an accurate diagnosis.

Neuroendocrine tumor causes

Doctors don’t typically know what causes a NET to form. An exception lies with genetic changes, or variants, you can inherit from parents. Occasionally these can raise the risk for a NET, sometimes significantly. This risk happens most often with pheochromocytomas and paragangliomas.

We offer the latest NET imaging and treatment tools, as well as much more:

• Expertise: NET care is complex and evolving, with no two cases the same. Our specialists are well-versed in all the available evidence. They sit on influential medical groups such as the North American Neuroendocrine Tumor Society (NANETS) and the National Comprehensive Cancer Network (NCCN). They’ve also earned a Center of Excellence designation from the Pheo Para Alliance.
• Approach to treatment: Our team has the expertise to take on the most challenging cases. We offer a wide range of treatments, including the latest approaches and some not widely available. And we pace and sequence treatments for the best outcomes.
• Innovation: We were among the first to offer NET genetic testing. We have also led national clinical trials for major treatment advances. We continue to devise more effective therapies and create new options. We also conduct leading research that takes discoveries from the lab to the clinic.
• Partnerships: Most NETs get diagnosed in adulthood. But sometimes tumors form in children or children carrying a genetic change, placing them at risk. We work with the Children’s Hospital of Philadelphia (CHOP) to provide support and help teens move to adult care. We also partner with programs around the world in NET research.
• Support: Our dedicated nurse coordinator and nurse navigator lend help throughout the journey. We also provide a range of support for you and your family, focused on quality of life. And we offer ways to get involved and give back.

Why choose the Neuroendocrine Tumor Program at Penn Medicine?

NETs are uncommon, but not at Penn Medicine. We have deep experience with these types of tumors, and care for more people with NETs than most centers in the nation. It’s not unusual for people to travel from across the country for our specialized care.

Our unique Neuroendocrine Tumor Board

Every Friday at 7 am, nearly two dozen neuroendocrine tumor specialists from Penn meet to discuss cases. No other NET tumor board meets so frequently, with such a range of experts — an advantage that ensures truly personalized care recommendations.

Together, the team looks at the big picture for your care — both the challenge in front of them and future needs. They prioritize what is most pressing, weigh the potential risks and benefits of treatments, and support your quality of life while preserving future options. If there’s a therapy out there, they discuss it, including clinical trials.

Specialties represented on our tumor board include:

• Endocrinology
• Gastroenterology
• Genetics
• Hypertension
• Interventional radiology
• Medical oncology (with separate specialists for each group of NETs)
• Otorhinolaryngology
• Pathology
• Pediatrics
• Nuclear medicine
• Radiation oncology
• Surgery (endocrine, oncologic and thoracic specialists)

Second opinions for neuroendocrine tumors

You may have questions about your diagnosis. You may have been told you have limited options. Or you may keep hearing the same suggestions during treatment without getting better.

If so, consider reaching out to our program. It’s not unusual to seek other opinions with NETs — it’s expected, actually. We’re happy to provide a second opinion, or even a third or fourth. We can help at any point, whether you’re seeking to clarify a diagnosis or looking for other options after starting treatment.

We try to see you within 10 days (and sooner when high blood pressure poses a danger). Our team thoroughly reviews all records you provide. We may also recommend new testing — we don’t want to miss anything that could help.

After your consultation, we remain flexible. We’re able to provide all your care here. We’re also happy to partner with providers closer to your home.