Diagnosing and Treating Patients with Neuroendocrine Tumors and Carcinoid Syndrome


Neuroendocrine tumors (NETs) are rare and often misdiagnosed. These tips can help with the diagnosing and treatment of patients with NETs, and carcinoid syndrome.

Pam Gaytan, RN, BSN

Pam Gaytan, RN, BSN

Pam Gaytan, RN, BSN

Five years ago, I made the decision to leave my senior-level job in marketing to become an oncology nurse. After standing by my best friend as she battled a rare, aggressive cancer, I realized I wanted to reprioritize my life to help make a difference in other peoples’ lives. She is the reason I now dedicate my life to listening, understanding, and treating cancer patients.

Since joining the Rocky Mountain Cancer Centers team, I have immersed myself in the world of neuroendocrine tumors (NETs), a rare cancer that develops in cells that secrete hormones. I have sat in many patient visits at the clinic and attended surgeries to better understand this disease, and I’ve learned that every NET patient story is different. There are more than 60 different types of NETs, and they cause different symptoms, depending on the location of the tumor, and whether the NET is functional or nonfunctional.

Some people with NETs develop carcinoid syndrome, which is most often marked by debilitating diarrhea and facial flushing. Other symptoms can include shortness of breath, high blood pressure, fatigue, abdominal pain, cramping, unexplained weight loss, and even heart failure. Unfortunately, many of these symptoms are also associated with more common diseases, and on average, it takes 7 years for a NET patient to be appropriately diagnosed.

I appreciate my team’s philosophy of treating the patient, not just the disease, and the high value put on quality of life. I believe it’s important for oncology nurses to encourage our patients to accurately describe their life-disrupting symptoms. Many of my patients with carcinoid syndrome are having diarrhea 10 times a day, or their face is so flushed it is like red leather, so I work closely with them to provide solutions to help improve their quality of life. The good news is that with proper diagnosis and treatment, these symptoms can be successfully managed and our patients’ lives can be significantly prolonged.

Following are 3 tips as you help diagnose and treat patients with NETs, including those with carcinoid syndrome:

1. Partner with NET experts and take a multidisciplinary approach.

Because NETs and carcinoid syndrome can often be challenging to diagnose, as nurses, we need to encourage our patients to share all of their disease symptoms, whether they believe it’s related to cancer or not. We also need to push them to discuss symptoms for which they might be seeing another type of specialist, such as a gastroenterologist. Postdiagnosis, it is often the nurse, or nurse practitioner, who will support the patient and doctor to ensure that all information is shared across the integrated treatment team.

From my experience, once a patient receives a NET diagnosis, they are often relieved and thankful to finally know what disease they need to battle. But listening and communicating are still critical, as patients will have many questions, and this disease can be difficult to understand and explain to loved ones.

Although rare, the prevalence of NETs has been increasing over the last 30 years, partly due to better diagnostic tools. At our clinic, we see 10 to 14 new NET patients each week. I then work closely with their local clinicians and stay in regular contact throughout the diagnosis and treatment process.

NETs are a complicated malignancy because they can come from all over the body. Therefore, they require specialists who understand the different types to determine the best treatment strategy, and a multidisciplinary approach because the disease crosses into so many different medical subspecialties.

2. Listen to your patients and ask them to record their symptoms.

Carcinoid syndrome is real. Sadly, many patients are referred to psychiatrists because their healthcare provider does not believe their symptoms are occurring. I always ask every patient whether they are experiencing any GI or flushing symptoms and whether their symptoms have persisted with no explanation.

Listen to your patients and ask them to keep a daily diary inclusive of their symptoms, what they ate, where they went, and how they felt. There can be food and environmental triggers, so it is important to go through the diary after 7 days to assess how well treatment is working.

When my patients have a severe diarrhea flare-up, I talk to them every day if needed to ensure we are caring for them properly. Although NETs are usually slow-growing, patients more often succumb to electrolyte imbalance due to severe diarrhea or bowel obstruction as opposed to the cancer itself.

3. Formulate an individualized treatment plan.

Despite the reputation as an indolent disease, NETs are highly malignant and nearly all disease recurs. In some settings of local disease and complete resection, the patient may be cured; however, the more frequent situation is a disease-free period and ultimate distant recurrence which is why close follow-up is imperative for early detection.

No fixed protocol exists for follow-up in surveillance or restaging, but at my center, we scan all of our patients regularly. By the time NET symptoms appear, the cancer has often metastasized; however, there are effective treatments to manage this lifelong disease.

Quality of life can be dramatically improved for NET and carcinoid syndrome patients. For instance, a patient’s debilitating diarrhea can be reduced from 10 times a day to 5 times a day, which allows the individual to attend social functions or work again.

Nevertheless, many of the treatments for NETs are administered differently than what the typical oncology nurse is accustomed to, so again, it’s important to consult with a specialist and review all administration instructions carefully before beginning new treatments.

It’s also important to tailor a treatment plan based on the patient’s specific symptoms and then work collaboratively with all relevant care team members to treat the whole patient. A variety of new treatments are being researched right now, and I expect targeted treatments for carcinoid syndrome to be available to patients soon.

For more information and resources about NETs and carcinoid syndrome, I encourage oncology nurses to visit the Healing NET Foundation website at www.thehealingnet.org.

Pamela A. Gaytan, RN, BSN is a registered nurse clinician and neuroendocrine specialist at The Neuroendocrine Institute at The Rocky Mountain Cancer Centers in Denver, Colorado, a practice in the US Oncology Network. Gaytan serves as the primary neuroendocrine nurse engaged in patient and family education pertaining to diagnoses and treatments, delivers continual psychosocial support and advocacy, and coordinates and provides direct patient care.

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