Newly Diagnosed

Facing a Neuroendocrine Tumor Diagnosis

You are not alone. The Neuroendocrine Tumor Research Foundation offers information and resources to those who have been diagnosed  with a neuroendocrine tumor. Our goal is to equip you with the knowledge you need to be an active participant in your care so you can feel confident in your care team and in your treatment choices.

Learning of your cancer diagnosis

It is earth shattering to hear about your neuroendocrine cancer diagnosis.  It can be hard to know what to do next. The news floods your mind with thoughts and emotions.  You may experience:

  • Being angry, afraid, or worried
  • Not really believing that you have cancer
  • Feeling  sad, guilty, or lonely
  • Having a strong sense of hope for the future

Any and all of these emotions are common following a neuroendocrine cancer diagnosis. It may help to share your emotions with a friend, family member, religious leader, or your care team. Many people with neuroendocrine tumors find support and encouragement by attending support groups.

Talking with your care team

When you meet with your doctor, you will hear a lot of information.  Before your appointment,  make a list of questions.  Organize your question list so you ask the most important ones first. These sample questions may help you learn more about your neuroendocrine cancer diagnosis.

Asking questions about a neuroendocrine tumor diagnosis

Ask as many questions as you need to

Your doctor needs to know your questions and concerns. Let your doctor know you have questions in advance. That way he or she can plan extra time to address them or schedule a follow-up appointment. 

Don’t second-guess your questions 

All your questions are important and deserve an answer. It’s okay to ask the same question more than once. It’s also okay to ask your doctor to use simpler words and explain terms that are new to you. To make sure you understand, use your own words to repeat back what you heard the doctor say.

Take someone with you when you see the doctor

Ask a family member or friend to go with you when you see your doctor. This person can help by listening, taking notes, and asking questions. 

Learning about neuroendocrine cancer

Browse this website to learn more about neuroendocrine tumors. Also, check out the NETRF YouTube channel, which offers a wide range of talks from NET specialists. Try to attend a NETRF patient and caregiver conference. These full-day, free educational programs offer information on the latest NET tests and treatments. Learning as much as you can help reduce some of the uncertainty that comes with a neuroendocrine cancer diagnosis and can help you get more involved in your care. 

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15-Year NET Survivor Shares His Best Advice

Brian Bowe has weathered many storms: changes in his career, his marriage, and a tragic mass shooting. Looking back, he says one step helped him most in his recovery from neuroendocrine cancer: attending a support group.

Miss Flora to the Rescue

Like a superhero to the rescue, Flora Whitmore’s virtual playground emerged on Facebook to help children and parents through a difficult time.

Understand your diagnosis.

Find a care team you trust.

Attend a patient conference.

Advice for starting your NET journey.

6.5x increase in incidence from 1973 to 20121
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passed on average from first symptom to diagnosis2
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of patients had metastases at diagnosis2
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1Dasari A, Shen C, Halperin D, et al. Trends in the incidence, prevalence, and survival outcomes in patients with neuroendocrine tumors in the United States. JAMA Oncol. 2017;3(10):1335-1342.

2Singh S, Granberg D, Wolin E, et al. Patient-reported burden of a neuroendocrine tumor (NET) diagnosis: results from the first global survey of patients with NETs. J Glob Oncol. 2016;2(1):43-53.