People who have a NET can lead meaningful, active, and productive lives. Learn how you can make the most of every day.
Managing symptoms of NETs
There is no doubt that life changes the instant you learn you have a NET. For some, the news comes following years of persistent, unexplained ailments. Those who have no symptoms or whose tumor was discovered incidentally during routine medical care or while being treated for another condition may be shocked to learn they have cancer.
A person with neuroendocrine tumors can have symptoms for the following reasons:
Tell your doctor about any symptoms or side effects that you may be experiencing. To explain the frequency and seriousness of any side effects, keep a log of your symptoms and share it with your care team. This may help your doctor in recommending modifications or treatment options to alleviate any symptoms.
Diarrhea is a common and troublesome symptom in many people who have a NET. There are several reasons that could explain the diarrhea, from the disease itself to side effects from the treatment.
There are a few steps you can take to try to reduce the severity and frequency of diarrhea caused by NETs. In addition to limiting certain kinds of food and drinks (see Nutrition page), it is important to talk to your doctor about other ways to treat your diarrhea. For example, a medication called telotristat ethyl is approved to treat carcinoid syndrome diarrhea in combination with somatostatin analog therapy.
Fatigue is one of the most common issues faced by people living with NETs. Beyond physical exhaustion, fatigue may also cause emotional exhaustion. This makes fatigue tough to tackle.
There are a few things you can do to help manage your cancer-related fatigue, including:
Additionally, talk to your care team about your cancer-related fatigue. There may be other tests or treatments that can help resolve the issue.
Integrative care for people who have cancer includes mind-body practices, natural products, and lifestyle modifications in conjunction with conventional cancer treatment. Upwards of 90% of patients who have cancer use integrative medicine approaches like acupuncture, yoga, massage, mindfulness, meditation, hypnosis, and massage for pain management and enhanced quality of life.
Some complementary and alternative medicine approaches like acupuncture, yoga and meditation have been studied and are considered to be safe and effective. Other approaches, however, may not be beneficial and may actually be harmful, depending on the treatment you are receiving.
Be sure to talk to your care team about any integrative, complementary, or alternative medicine therapies you are considering to ensure those therapies are safe and will not negatively interfere with your cancer treatment.
People face many emotions when living with a NET, with 60% of patients saying their disease had an impact on their emotional health. It is challenging to live with the uncertainty of the diagnosis. The upheaval may seem never-ending. It can be a marathon of tests, treatments, symptoms, and syndromes.
Some patients may experience symptoms daily. Emotions can change from day to day and week to week, which is true for both newly diagnosed patients and those who have been living with a NET for many years. Those who have cancer may experience:
Share what you are feeling with those you trust. Talk to your family and friends about your feelings. If you have a faith community, consider reaching out to a faith leader for support. One in five NET patients seeks counseling for the emotional aspects of the illness. Your care team may be able to suggest names of counselors with experience in treating cancer survivors.
Many patients living with a NET benefit from attending patient support groups where they can share concerns and solutions with others who are facing the same cancer. If you are not yet ready to talk, consider other ways to express yourself. Some people keep a journal of their thoughts and feelings. Engaging in any creative art form – like painting, woodworking, music, film, poetry, or photography – may help you identify and understand your feelings.
Fear and worry can sometimes take over. In these situations, it helps to be informed. Most people feel better when they learn the facts, as they feel less afraid and are aware of what to expect. Play an active part in your care by learning as much as you can about NETs.
Many patients living with a NET benefit from attending patient support groups where they can share concerns and solutions with others who are facing the same cancer. If you are not yet ready to talk, consider other ways to express yourself. Some people keep a journal of their thoughts and feelings. Engaging in any creative art form – like painting, woodworking, music, film, poetry, or photography – may help you identify and understand your feelings.
Anxiety, fear, and worry can tighten muscles and make your mind race. It helps to find ways to let go of the tension. Meditation, guided imagery, and relaxation exercises may help you.
Many patients living with a NET benefit from attending patient support groups where they can share concerns and solutions with others who are facing the same cancer. If you are not yet ready to talk, consider other ways to express yourself. Some people keep a journal of their thoughts and feelings. Engaging in any creative art form – like painting, woodworking, music, film, poetry, or photography – may help you identify and understand your feelings.
Getting out of the house to do something can help you focus on things besides cancer and the worries it brings. Exercise, gentle yoga, and stretching can help, too.
Some people living with NETs find fulfillment by volunteering for a worthy cause. Community involvement can offer social, professional, and emotional benefits. Whether you volunteer for a NET-related organization like NETRF or causes that are not related to NETs, helping others can be emotionally uplifting.
Sometimes, looking for the positive in a situation means looking for the good even in a bad time or trying to be hopeful instead of imagining the worst. Try to use your energy to focus on wellness and what you can do presently to stay as healthy as possible.
Being diagnosed with neuroendocrine cancer may change all that you have come to know as normal. Instead, you may need to discover a “new normal.” As part of the new normal, many patients undergo the stress of routine scans to check for the growth or recurrence of tumors. You may take medication for years to manage symptoms or reduce the risk of your cancer progressing.
In between injections, infusions, and CT scans, you can still lead an active and meaningful life. Each person finds his or her way forward. Yes, your life will be different – your work and relationships may change, sometimes for the better.
We want you to know there is a tight-knit and supportive NET community. Even though you may have never met another person with neuroendocrine cancer, you can easily find a robust community of NET patients who are experiencing the same symptoms, challenges, and fears. While NETs are uncommon, people touched by this disease have found many ways they can
come together to help one another.
GI Troubles, Diarrhea and Diet, by David Richards, MD
More Than an Upset Stomach: Managing GI Symptoms, by Carol Semrad, MD
Integrative Oncology in Neuroendocrine Tumors, by Kathleen Cavanaugh, RN, MS, ANP