Neuroendocrine Tumors: Survivorship

Approved by the Cancer.Net Editorial Board, 01/2021

ON THIS PAGE: You will read about how to cope with challenges in everyday life after being diagnosed with a NET. Use the menu to see other pages.

What is survivorship?

The word “survivorship” means different things to different people. Common definitions include:

  • Having no signs of tumor after finishing treatment.

  • Living with, through, and beyond this diagnosis. According to this definition, survivorship begins at diagnosis and continues during treatment and through the rest of a person’s life.

Survivorship can be a complicated part of having a tumor. This is because it is different for everyone.

For some, even the term "survivorship" does not feel right, and they prefer to use different language to describe and define their experience. Sometimes extended treatment will be used for months or years to manage or control a tumor. Living with a NET indefinitely is not easy, and the health care team can help you manage the challenges that come with it. Everyone has to find their own path to name and navigate the changes and challenges that are the results of their diagnosis and treatment.

Survivors may experience a mixture of feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a tumor diagnosis and have gained a greater acceptance of themselves. Others become very anxious about their health and uncertain about coping with everyday life. Feelings of fear and anxiety will still occur as time passes, but these emotions should not be a constant part of your daily life. If they persist, be sure to talk with a member of your health care team.

Survivors may feel some stress when their frequent visits to the health care team end after completing treatment. Often, relationships built with the medical care team provide a sense of security during treatment, and people miss this source of support. This may be especially true when new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexual health and fertility concerns, and financial and workplace issues.

Every survivor has individual concerns and challenges. With any challenge, a good first step is being able to recognize your fears and talk about them. Effective coping requires:

  • Understanding the challenge you are facing

  • Thinking through solutions

  • Asking for and allowing the support of others

  • Feeling comfortable with the course of action you choose

Many survivors find it helpful to join an in-person support group or an online community of survivors. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the place where you received treatment.

Changing role of caregivers

Family members and friends may also go through periods of transition. A caregiver plays a very important role in supporting a person diagnosed with a tumor, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to the diagnosis will become much less or come to an end. Caregivers can learn more about adjusting to life after caregiving.

A new perspective on your health

For many people, survivorship serves as a strong motivator to make lifestyle changes.

People recovering from a NET are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, exercising regularly, and managing stress. Regular physical activity can help rebuild your strength and energy level. Your health care team can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about making healthy lifestyle choices.

It is important to have recommended medical checkups and tests (see Follow-up Care) to take care of your health. 

Talk with your health care team to develop a survivorship care plan that is best for your needs.

Looking for More Survivorship Resources?

For more information about cancer survivorship, explore these related items. Please note that these links will take you to other sections of Cancer.Net:

  • ASCO Answers Cancer Survivorship Guide: Get this 48-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print.

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about what comes after finishing treatment.

  • Survivorship Resources: Cancer.Net offers information and resources to help survivors cope, including specific sections for children, teens and young adults, and people over age 65. There is also a main section on survivorship for people of all ages.

The next section offers Questions to Ask the Health Care Team to help start conversations with your health care team. Use the menu to choose a different section to read in this guide.