From diet to exercise to tapping into a good support network, you can do several things to help yourself feel better when you have a neuroendocrine tumors (NET).
A lot depends on where your tumor is and the kind of symptoms it causes. For some folks, a rash and a headache are big issues. Others might have stomach trouble or gain or lose weight. And for just about everyone, finding a way to cut stress while you manage your health is a top concern.
No matter your priority, lifestyle changes can go a long way to keep your mind and body healthy.
Skip the Wine and Cheese
Some people with NETs have a group of symptoms called carcinoid syndrome. You may find that some kinds of foods and drinks trigger problems like flushing skin, painful gas and bloating, or severe diarrhea.
If that happens to you, pass up treats like aged or blue cheeses, chocolate, red wine, and beer, says Vijay Shivaswamy, MBBS, associate professor of internal medicine at the University of Nebraska Medical Center in Omaha.
All those things are high in amines, compounds that affect your blood pressure or body temperature.
"For these patients, changing the diet could lessen symptoms or even not trigger the symptoms to begin with," he says. "Amines can trigger carcinoid syndrome symptoms, so if you cut down on these foods, you may lessen attacks."
Other foods high in amines include smoked meats like salami or sausage, pickled fish like herring, or fermented foods like miso or sauerkraut.
If you cut back on wine or other alcoholic drinks, you can get some relief from skin flushing in particular, says Diane Reidy-Lagunes, MD, a medical oncologist at Memorial Sloan Kettering Cancer Center in New York City. "Also, this disease tends to go to the liver too, so we ask our patients to restrain their alcohol use -- refrain or have very little."
Some other diet tips that may help you ease your symptoms or feel better while you treat your disease:
- Eat smaller, frequent meals.
- Avoid fatty, greasy, or highly spicy foods.
- Go for whole, natural foods over processed ones high in salt.
A healthy diet can keep your strength and energy up while you get treatment for your tumor, Shivaswamy says. If you're going into chemotherapy, make sure to get enough calories and protein.
While no diet or vitamin can treat your disease, a healthy lifestyle can help you feel better in general, Reidy-Lagunes says. She suggests you keep up with exercise, such as taking a half-hour walk, three times a week or more. And if you smoke, quit.
She says you can take a multivitamin, if you want. Some people with NETs don't have enough of a nutrient called niacin. This could cause you to have dry, cracking skin around your mouth. A healthy, balanced diet or a vitamin supplement may help.
Get More Support
It's natural to feel anxious, stressed out, and sometimes depressed when you find out you've got a NET. If you don't take care of your emotional needs, it can make it harder to treat your tumor.
"More research shows that patients with a lot of stress tend not to do as well as patients who have strong, family support and less stress," Reidy-Lagunes says.
Go to support groups for people who have NETs. "Just talking with other people, or trying things like meditation, can help you feel more relaxed," she says.
Talk to your doctor to find ways to manage your stress. "My job is to be on this journey with my patients," she says.
"Medications, procedures, tests. There's a lot of stress that these patients go through," Shivaswamy says. It can help a lot to set up a support network you rely on.