NETs: 3 strategies for coping with delayed diagnosis

Neuroendocrine tumors (NETs) are a type of cancer that begin in neuroendocrine cells. These cells enable communication between the body’s nervous system and endocrine (hormone-producing) system. A simple explanation is that neuroendocrine cells receive signals from the nervous system and produce hormones in response to those signals.

There are different types of neuroendocrine cells, which are found in many locations throughout the body, including the gastrointestinal tract, lungs, pancreas, skin, thyroid gland, pituitary gland, adrenal glands, urinary system, and reproductive system. NETs can form in any locations where there are neuroendocrine cells.

The GI tract is the most common location for NETs to begin, followed by the pancreas and lungs.

NETs are often misdiagnosed

NETs are often described as a rare condition, but data on the number of people diagnosed with NETs is incomplete. The incidence of NETs has increased in recent decades. This increasing incidence is partly due to improvements in screening, diagnosis, and overall knowledge of NETs—in other words, healthcare providers have gotten better at identifying these cancers.

While knowledge of NETs is improving, symptoms overlap with many other more common conditions, and misdiagnosis and delays in diagnosis are common. For many people with NETs, getting an accurate diagnosis takes several years, and involves multiple healthcare providers, diagnostic tests, and added healthcare costs.

Coping with misdiagnosis and delays in diagnosis

If you or a loved one is living with a neuroendocrine tumor and has experienced a misdiagnosis or a delay in diagnosis, the following strategies may help:

Continue with treatment

When you’ve been to multiple healthcare providers and spent several years just to receive a diagnosis, it’s normal to feel mistrust, resentment, even anger. It may be difficult to believe that things will be different, or that the time and money you are spending now will be worth it.

These feelings are normal—and it’s important to acknowledge them. It’s also important that these feelings do not prevent you from receiving treatment for NETs. Like other cancers, NETs grow and spread.

There are effective treatments for NETs. Often, the most important step in treating a condition like NETs is finding a healthcare team that understands the condition. If you are currently looking for a healthcare provider that specializes in NETs, there are resources to help you. One example is the Neuroendocrine Tumor Research Foundation, which has a searchable database of NET specialists.

Keep learning about NETs

People with any type of cancer are encouraged to be an active participant in treatment decisions. The term for this is shared decision making. Patient education—learning about the type of cancer you have, including how it is treated—is an essential part of this process.

Here are some strategies that may help:

• Block off a small amount of time each week for learning about NETs. Keep a list of articles or other materials that you’ve read or want to read. Bookmark sites that provide information and resources to people with NETs and caregivers. Stay up to date on what treatments are available. Ask your healthcare providers for materials to take with you.
• Write down any questions you have and anything you do not fully understand. Bring these up with your healthcare providers and ask for any explanations that you need—for example, why NETs cause a particular symptom, or how a treatment works.
• Try to connect and network with other people who are living with NETs, they can be a good source of information as well as emotional support.

Prioritize your mental health

Updates on your overall mental health should be a part of your conversations with your healthcare providers. NETs can be distressing conditions to live with. Many NETs cause changes in hormone levels, which can affect moods, thoughts, behavior, and sleep.

Here are some strategies to consider:

• Keep a journal, recording notes on how you feel each day, including mood, stress level, and anything that has been difficult. Also keep notes on things that are going well.
• Join a support group, either online or in person, where you can talk to other people who are living with NETs, or other people who are living with cancer, who may understand some of the challenges you are experiencing.
• Work with a healthcare provider who specializes in mental health, such as a therapist or counselor.
• Make time for yourself, time to dedicate to the things that are important to you, such as family, friends, personal goals, hobbies, and activities you enjoy. You may also want to try meditation or other relaxation exercises.