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At our National Cancer Information Center trained Cancer Information Specialists can answer questions 24 hours a day, every day of the year to empower you with accurate, up-to-date information to help you make educated health decisions. We connect patients, caregivers, and family members with valuable services and resources.
Or ask us how you can get involved and support the fight against cancer. Some of the topics we can assist with include:
For medical questions, we encourage you to review our information with your doctor.
Gastrointestinal Neuroendocrine (Carcinoid) Tumors
For some people with gastrointestinal (GI) carcinoid tumor, treatment may remove or destroy the cancer. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about cancer coming back. This is a very common if you have had cancer.
For other people, the cancer may never go away completely. These people may stay on drug therapy or get regular treatments with chemotherapy, radiation therapy, or other therapies to try to help keep the cancer in check. Learning to live with cancer that does not go away can be difficult and very stressful.
When treatment ends, your doctors will still want to watch you closely. It is very important to go to all of your follow-up appointments. During these visits, your doctors will ask if you are having any problems and will examine you and may order lab tests or x-rays and scans to look for signs of cancer or treatment side effects. Almost any cancer treatment can have side effects. Some may last for a few weeks to months, but others might last a long time. Some side effects might not even show up until years after you have finished treatment. It’s important for all GI carcinoid tumor survivors, to let their health care team know about any new symptoms or problems, because they could be caused by the cancer coming back or by a new disease or a second cancer.
Standard recommendations for doctor visits and follow-up tests have not yet been defined for GI carcinoid tumors. Initial guidelines suggest that for most people who have had their GI carcinoid tumors completely removed:
For some rectal tumors, sigmoidoscopy is recommended 12 months after treatment and possibly annually thereafter. Your doctor may follow one of these schedules, but might have reasons to recommend a different schedule as well.
Follow-up visits and imaging tests may be slightly more frequent for those patients whose cancers could not be completely removed with surgery, who have cancer that has spread to other organs like the liver, or have cancers that are growing very quickly.
Talk with your doctor about developing a survivorship care plan for you. This plan might include:
Even after treatment, it’s very important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.
At some point after your cancer treatment, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records.
If you have (or have had) a GI carcinoid tumor, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements.
Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight is important. We know that these types of changes can have positive effects on your health that can extend beyond your risk of GI carcinoid tumors or other cancers.
If you smoke, quitting is important. Although most GI carcinoid tumors do not appear to be linked with smoking, more studies are needed. Of course, quitting smoking can have other health benefits such as improved healing, lowering your risk of some other cancers, as well as improving your outcome (prognosis) from the cancer. If you need help quitting, talk to your doctor or call the American Cancer Society at 1-800-227-2345.
So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of GI carcinoid tumors progressing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.
Dietary supplements are not regulated like medicines in the United States – they do not have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.
If cancer does come back at some point, your treatment options will depend on where the cancer is, what treatments you’ve had before, and your health.
For more information on how recurrent cancer is treated, see Treatment of Gastrointestinal Carcinoid Tumor, by Extent of Disease.
For more general information on recurrence, you may also want to see Understanding Recurrence.
People who’ve had a GI carcinoid tumor can still get other cancers. Learn more in Second Cancers After Gastrointestinal Carcinoid Tumor.
Some amount of feeling depressed, anxious, or worried is normal when GI carcinoid is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others. Learn more in Life After Cancer.
The American Cancer Society medical and editorial content team
Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.
Harms of Cigarette Smoking and Health Benefits of Quitting was originally published by the National Cancer Institute. NCI website. https://www.cancer.gov/about-cancer/causes-prevention/risk/tobacco/cessation-fact-sheet#q9. Reviewed December 19, 2017. Accessed July 11, 2018.
Kushi LH, Doyle C, McCullough M, Rock CL, Demark-Wahnefried W, Bandera EV, Gapstur S, Patel AV, Andrews K, Gansler T; American Cancer Society 2010 Nutrition and Physical Activity Guidelines Advisory Committee. American Cancer Society Guidelines on nutrition and physical activity for cancer prevention: reducing the risk of cancer with healthy food choices and physical activity. CA Cancer J Clin. 2012 Jan-Feb;62(1):30-67.
National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Neuroendocrine and Adrenal Tumors. V.2.2018. Accessed at https://www.nccn.org/professionals/physician_gls/pdf/neuroendocrine.pdf on August 5, 2018.
Singh S, Moody L, Chan DL, et al. Follow-up Recommendations for Completely Resected Gastroenteropancreatic Neuroendocrine Tumors. JAMA Oncol. 2018 Jul 26. doi: 10.1001/jamaoncol.2018.2428. [Epub ahead of print].
Last Revised: September 24, 2018
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