Coping With Carcinoid Syndrome

Suffering from carcinoid syndrome is understandably difficult, especially if it affects how you function in everyday life. While it is normal to struggle with the condition’s wide range of symptoms, there are ways to manage and cope with them. Learning to live with carcinoid syndrome is an important part of your cancer journey and can help alleviate some of the stress and anxiety you may feel about your illness.

Neuroendocrine tumors (NETs) are rare cancers that start in specialized cells called neuroendocrine cells. Some NETs release abnormally high levels of bioactive substances, like hormones, into your bloodstream. These tumors are called functional NETs.

In normal circumstances, bioactive substances secreted by functional NETs are inactivated by enzymes in the liver. However, when the cancer has spread (metastasized) to your liver or other areas this may affect serotonin metabolism. This means that the liver may not be able to break down the bioactive substances to their inactive form. These substances can then circulate throughout your body and cause a wide range of symptoms collectively known as carcinoid syndrome.

Carcinoid syndrome occurs in up to 20% of people with metastatic NETs. It is more common in NETs that originate from the midgut (small intestine, appendix and proximal colon) and have spread to the liver. However, metastatic NETs arising from the foregut (lung, stomach and duodenum) and hindgut (distal colon and rectum) can also cause carcinoid syndrome in rare instances.

Medical treatment, such as hormone therapy, can help to relieve the symptoms of carcinoid syndrome. However, you can also make lifestyle changes to manage these symptoms on your own.

Avoiding certain foods and beverages

Eating and drinking certain foods and beverages can escalate or aggravate flushing in people with carcinoid syndrome. Therefore, to avoid worsening your symptoms and help you feel better, you should stay away from such foods and drinks as much as possible.

These include alcoholic and caffeinated drinks and foods high in amines (e.g., aged cheese, smoked fish, and meats) and serotonin (e.g., nuts, bananas and raw tomatoes). You should also steer clear of having the typical three large meals every day. Instead, try consuming four to six smaller but nutritious meals daily.

If you’re suffering from diarrhea, keeping yourself hydrated is important to avoid dehydration. To do this, make sure you are drinking fluids a little bit at a time frequently throughout the day. It is also recommended to avoid foods that can exacerbate your diarrhea, such as wheat bran and prunes.

If you’re unsure how to adjust your diet, speak to your doctors and cancer care team. They can refer you to a nutritionist or dietitian who can help you develop a healthy and balanced dietary plan that works for you.

Steer clear of strenuous activity

Another factor that can trigger carcinoid syndrome is strenuous activity or physical exertion. While it is important to keep fit and stay active, consider lowering the intensity of your exercise. You can engage in light physical activity, which includes short walks and jogs. If you need help with physically demanding tasks, seek assistance from your family and friends.

Lower your stress levels

If possible, cut any extra stress out of your life. High stress levels can cause severe episodes of flushing and itching, so taking care of your mind and emotions is crucial to avoid such symptoms. If you feel overly stressed, try breathing exercises or other relaxation techniques. These practices can potentially relieve stress and fatigue and improve your coping and well-being.

Join a support group

Support groups are a great way to meet other people with similar, first-hand experiences with carcinoid syndrome, especially considering the rarity of this condition. These groups provide a safe space to talk comfortably about your feelings and concerns. This can be useful in helping you feel more understood and less alone. Support groups are also a place to discuss practical information, such as managing your carcinoid syndrome. Talking about these topics could ease your feelings of helplessness as you undergo treatment.