Prognosis and survival for neuroendocrine cancer

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A prognosis is the doctor’s best estimate of how cancer will affect you and how it will respond to treatment. Survival is the percentage of people with a disease who are alive at some point in time after their diagnosis. Prognosis and survival depend on many factors.

The doctor will look at certain aspects of the cancer as well as characteristics of the person (such as their sex). These are called prognostic factors. The doctor will also look at predictive factors, which influence how a cancer will respond to a certain treatment and how likely it is that the cancer will come back after treatment.

Prognostic and predictive factors are often discussed together. They both play a part in deciding on a prognosis and a treatment plan just for you. Only a doctor familiar with your medical history, the type and stage and other features of the cancer, the treatments chosen and the response to treatment can put all of this information together with survival statistics to arrive at a prognosis and chances of survival.

The following are prognostic and predictive factors for neuroendocrine cancer.

Stage

The stage of neuroendocrine cancer is an important factor in determining the outcome. Stage includes the size of the tumour and where the cancer is in the body. People with neuroendocrine cancer that is diagnosed at an early stage have the most favourable prognosis. People with cancer diagnosed in advanced stages (the cancer has spread into nearby lymph nodes or other organs) have a less favourable prognosis.

Grade

Grade is a description of how fast cancer cells are growing. The grade of neuroendocrine cancer may be determined by counting the number of cells that are dividing (called mitotic count) and the number of cells with Ki-67 antigen in the nucleus. Ki-67 antigen is a tumour marker that shows increased number of cells because of cell growth and division.

Neuroendocrine tumours (NETs) that are lower grade have a better prognosis than those that are higher grade. People with NETs of a low Ki-67 level have a more favourable prognosis and longer survival than those with NETs of a high Ki-67 level.

Type of tumour

The type of neuroendocrine cancer is an important factor in predicting prognosis. NETs have a better prognosis than neuroendocrine carcinomas (NECs).

NETs in the rectum have better prognosis than many types of NETs, including small intestine NETs and pancreatic NETs (pNETs).

Whether the cancer has spread

Neuroendocrine cancer that has spread into critical organs, such as the liver, has a less favourable prognosis than neuroendocrine cancer that has remained at the primary site where it started.

Levels of CgA and hormones

CgA (chromogranin A) and hormones are substances that can be measured to help diagnose neuroendocrine cancer and to monitor how treatment is working (the response to treatment). People with high levels of CgA in the blood or high levels of a hormone called 5-HIAA in the urine (pee) have a poorer prognosis compared to people with normal levels.

Even when any symptoms of neuroendocrine cancer are controlled, increased hormone levels mean that the cancer continues to grow (progress). For example, elevated 5-HIAA levels in the urine means that there is too much serotonin and this can cause heart problems (called carcinoid heart disease). People with carcinoid heart disease have a less favourable prognosis.

People with Cushing syndrome also tend to have a less favourable prognosis. Cushing syndrome is a group of symptoms caused by too much of the hormone cortisol in the body.

Sex

Women tend to have a better prognosis than men.

We need more research and can’t say at this time what the prognosis is for transgender, non-binary and gender-diverse people.

Expert review and references

  • Sylvia Asa, MD, PhD
  • Bergsland EK, Woltering EA, Rindi G, et al. Neuroendocrine tumors of the pancreas. Amin, MB (ed.). AJCC Cancer Staging Manual. 8th ed. Chicago, IL: American College of Surgeons; 2017: 34:407-419.
  • Canadian Neuroendocrine Tumour Society (CNETS). Neuroendocrine Tumours: Reference Guide for Patients and Families (Version 3). 2020. https://cnets.ca/.
  • Man D, Wu J, Shen Z, Zhu X. Prognosis of patients with neuroendocrine tumor: a SEER database analysis. Cancer Management and Research. 2018: 10:5629–5638.
  • National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Neuroendocrine and Adrenal Tumors Version 2.2024. 2024.
  • Pavel M, Öberg k, Falconi M, et al. Gastroenteropancreatic neuroendocrine neoplasms: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Annals of Oncology. 2020: 31(7):844–860.
  • PDQ Adult Treatment Editorial Board. Gastrointestinal Neuroendocrine Tumors Treatment (PDQ®) – Health Professional Version . Bethesda, MD: National Cancer Institute; 2024. https://www.cancer.gov/.
  • PDQ Adult Treatment Editorial Board. Pancreatic Neuroendocrine Tumors (Islet Cell Tumors) Treatment (PDQ®) – Health Professional Version. Bethesda, MD: National Cancer Institute; 2024. https://www.cancer.gov/.
  • Sultana Q, Kar J, Verma A, et al. A comprehensive review on neuroendocrine neoplasms: presentation, pathophysiology and management. Journal of Clinical Medicine. 2023: 12(15):5138.

Survival statistics for neuroendocrine cancer

Survival statistics for neuroendocrine cancer are very general estimates. Survival is different for each stage and type of neuroendocrine cancer.

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