Expert Neuroendocrine Tumor Care

What is neuroendocrine tumor?

Neuroendocrine tumors, at times referred to carcinoid tumors, form in specialized cells within the body’s neuroendocrine system. These cells share some characteristics with nerve cells, but they can also produce certain hormones. While neuroendocrine tumors can be found anywhere in the body, many form in the gastrointestinal tract or lungs. In many cases, the exact cause is unknown. They are rarely due to hereditary conditions.

There are two main types of neuroendocrine tumors: “functional” and “nonfunctional”. What makes a tumor functional is whether it releases certain chemicals into the bloodstream that result in a unique condition. The most well-known condition is the carcinoid syndrome. Carcinoid syndrome occurs when a carcinoid tumor secretes chemicals into your bloodstream, causing a variety of signs and symptoms (insert hyperlink to anchor link to below content on symptoms). A carcinoid tumor, which is a type of neuroendocrine tumor, occurs most often in the gastrointestinal tract or the lungs. In addition, doctors define neuroendocrine tumors using two other factors, the “stage” (extent of growth or spread) and “grade” (how fast the tumor is growing and spreading).

Leading neuroendocrine tumor care

As a rare and complex condition, where you go for treatment matters. The level of a program’s neuroendocrine tumor expertise, as well as having access to the latest therapies, are both key to getting the most effective and safest treatment. At our clinic, we perform a comprehensive assessment and provide personalized care for this challenging condition. We offer:

Neuroendocrine cancer symptoms

The specific symptoms of a neuroendocrine tumor depend on its location in the body, its stage, and its grade. In some cases, there are no symptoms until the tumor has advanced. This is especially true for nonfunctional tumors. Adding to the complexity, when there are symptoms from either a functional or nonfunctional tumor, they may be mistaken for another condition. When there are symptoms, these can include:

• Pain from the tumor expanding and growing, which causes a “space-occupying” pressure
• Diarrhea
• Flushing
• Wheezing
• Hot flashes
• Rapid heartbeat
• Fatigue
• Dizziness

Pancreatic neuroendocrine tumors

Fewer than 5% of tumors arising in the pancreas are neuroendocrine tumors. Fortunately, most of these neuroendocrine tumors are slow growing and significantly less aggressive than the common variety pancreatic cancers that are called adenocarcinomas.

Neuroendocrine cancer diagnosis

If your neuroendocrine tumor doesn’t produce symptoms, it might be detected during a routine screening for another condition. If you do have symptoms, depending on the type of tumor, where it’s located and your specific symptoms, you may first see your primary care doctor before being referred to a neuroendocrine specialist. While a neuroendocrine tumor can be diagnosed in other ways, a diagnosis is most often made after a CT scan reveals the presence of a tumor.

What to expect at your first neuroendocrine appointment?

Once you are referred to the neuroendocrine tumor team at Henry Ford Health, your first visit will focus on confirming your diagnosis, reviewing the results of all of tests you’ve had, determining the need for further testing, and planning the next steps in your treatment. This includes:

• A thorough evaluation of your symptoms
• Having a medical exam and examining your medical history
• Having initial testing done, such as bloodwork, imaging scans or a biopsy of the tumor if one has already been found
• Depending on your neuroendocrine tumor and treatment needs, you may also meet with other specialists, such as a surgeon or nutritionist

After your first visit, your case will be discussed in our dedicated neuroendocrine tumor board, and we’ll develop your personalized treatment plan that will be communicated to you and your doctor.