Uncomplicating A Complicated Cancer: Neuroendocrine Tumors (NETs)
Complicated and unusual, neuroendocrine tumors (NETs) are one of the most misunderstood and often misdiagnosed of all cancer types.
At The Neuroendocrine Institute at Rocky Mountain Cancer Centers, our specialists have extensive knowledge in the diagnosis and treatment of neuroendocrine tumors and are able to provide patients with advanced treatment options to help them achieve better outcomes and enjoy a long, high quality of life. Leading the team is Dr. Eric Liu, an internationally recognized surgeon, specializing in diagnosing and treating neuroendocrine tumors (NETs), and medical oncologist Dr. Allen Cohn specializing in diagnosing and treating carcinoids, a type of neuroendocrine tumor.
A Basic Disease Description
So what is this disease better known as “the cancer that Steve Jobs had.”
Within the neuroendocrine system are cells that release hormones (endocrine) to help regulate most bodily functions. These neuroendocrine cells are found primarily in the lungs, gastrointestinal (digestive) tract (stomach and small and large intestines) and pancreas. Neuroendocrine tumors, also known as NETs, are the rare tumors that result from the abnormal growth of these cells. Unlike other cancers, NETs are usually small in nature and slow-growing. Neuroendocrine tumors that secrete hormones are considered “functional” and can cause varied symptoms based on the tumor’s location and the hormones being secreted. Recognizable hormones include serotonin, insulin, gastrin, glucagon, histamine, dopamine, vasoactive intestinal peptide, and somatostatin. Other lesser-known ones are also part of the vast hormonal repertoire of NETs, which is one reason why diagnosis and treatment is so complicated. NETs that grow without producing hormones are called “non-functioning” tumors and are considered non-symptomatic although they can still cause complications. In the small bowel, partial small bowel obstruction can cause abdominal pain and bleeding. In the lungs, airway obstruction can result in recurrent bronchitis/pneumonia.
The most common symptoms associated with functional tumors include abdominal pain, intense skin flushing, diarrhea, wheezing, heartburn, fatigue, and heart palpitations. Because of the rarity of the disease many physicians are not knowledgeable about or experienced with neuroendocrine cancer so the correlation between this disease and the persistence of these symptoms is often not made. According to The Carcinoid Cancer Foundation, more than 90% of all midgut carcinoid/NETs are incorrectly diagnosed as Irritable Bowel Syndrome (IBS) or Crohn’s disease and as a result, patients suffer for years without answers.
Even in advanced stages, neuroendocrine cancer is often misdiagnosed because patients may only present with a partial combination of symptoms while others are asymptomatic. Many gastrointestinal neuroendocrine tumors are actually discovered when the patient has imaging studies like an endoscopy or CT scan for other health issues.
Specializing In Answers
If you or someone you love has more questions than you have answers about the disease, and believe or know, you have the diagnosis, we’re here to help. At The Neuroendocrine Institute at Rocky Mountain Cancer Centers, we specialize in treating all types and stages of neuroendocrine tumors. Our multidisciplinary team of knowledgeable and experienced physicians are considered leaders in the diagnosis and treatment of this rare and complex cancer. Our team will take the time to listen and educate. We’ll share information with you and your referring doctor and coordinate care as needed.
Making A Neuroendocrine Tumor Diagnosis
The process of making a diagnosis, or confirming an existing one, starts with a physical exam and obtaining a complete personal and family medical history. To help determine tumor size, location and whether it has begun to spread, specialized imaging studies may be needed. These may include a high-resolution CT scan, MRI, nuclear imaging OctreoScan™, endoscopic ultrasound, or the Gallium 68 PET/CT, which is the most advanced testing.
Blood and urine tests may also be done to confirm elevated hormone levels. A needle biopsy, securing a sample of the tumor tissue, will then be done and examined by a highly skilled pathologist for the definitive diagnosis.
If a diagnosis is confirmed then the tumor sample is graded and the rate of tumor cell growth assessed. Most neuroendocrine tumors are classified as low-grade tumors because of how slowly they grow, although this is not always the case. The tumor grade and growth rate are important contributing factors to making a prognosis and determining a treatment plan. When diagnosed and treated appropriately most patients with neuroendocrine tumors can enjoy a high quality of life for many years.
Neuroendocrine Tumor Treatment Options
Our specialists have extensive knowledge and experience in the diagnosis and treatment of NET disorders. Treating NETs requires not only a personalized plan for treating the specific tumor type, but a long-term strategy for controlling the symptoms created by hormonal changes. The Neuroendocrine Institute at Rocky Mountain Cancer Centers offers patients the most advanced medical and surgical procedures, interventional radiologic procedures, and advanced medical treatments including clinical trials. The wide variety of treatment options now available makes the outlook for most patients, even those with the more aggressive NETs more hopeful than it used to be. Most importantly, we tailor the treatment plan to combine many types of therapy and cases are discussed in a multidisciplinary conference with radiologists, pathologists, and many other team members.
Surgical removal of the tumor is the preferred first treatment option whenever possible. Determining factors include the location and size of the tumor, the extent of its growth to other organs as well as the patient’s overall health.
Our internationally recognized surgeon has specialized expertise in minimally invasive procedures that allow patients faster recovery times. Frequently, when patients are told they are “Inoperable,” they may still benefit from surgical removal of as much tumor as is safely possible, something we call DEBULKING surgery. Removal of tumors may prevent future complications, hormone relapse, and slow the progression of the disease.
Additional Medical Treatment Options
Often times, when the tumor has spread to many organs and surgery, is not an option or only partially effective, additional medical treatment options can be used to slow tumor growth or control symptoms. Additional medical treatment options include:
- synthetic hormonal drug injections
- targeted therapies
- investigational agents
Liver Directed Neuroendocrine Tumor Treatment
A common site of tumor spread is to the liver. Unfortunately, when the disease is very severe, liver failure can be a cause of death. We work with leading interventional radiologists who use advanced techniques to treat the liver with radiation or embolization.
Neuroendocrine Tumors Clinical Trials
At The Neuroendocrine Institute at Rocky Mountain Cancer Centers, we are committed to finding new treatments and therapies for patients through clinical trials. Dr. Liu completed a fellowship under Dr. Kjell Oberg in Sweden, considered the pioneer of neuroendocrine research, and was responsible for establishing the first clinical trial in the United States for the Gallium 68 PET/CT, an important tool in diagnosing patients with NET. Dr. Cohn is the Rocky Mountain Cancer Center’s Medical Director of Research.
Neuroendocrine Tumors Educational Resources
At The Neuroendocrine Institute at Rocky Mountain Cancer Centers, our doctors are strong advocates of education for patients with neuroendocrine cancer and their families, as well as for physicians and other clinicians. Dr. Liu serves as Chief Medical Advisor of the Healing NET Foundation, and both he and Dr. Cohn are active in the North American Neuroendocrine Tumor Society and the Carcinoid Cancer Foundation.
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