Managing GEP-NETs With Lifestyle Habits

If you have gastroenteropancreatic neuroendocrine tumors (GEP-NETs), adopting healthy lifestyle habits such as eating right and exercising can help you stay well during treatment.

Unlike other cancers, GEP-NETs move slowly, with a longer life expectancy. “Oftentimes, this means that people can live with it for many years,” says Jennifer Eads, MD, an oncologist who specializes in gastrointestinal cancers at Penn Medicine’s Abramson Cancer Center in Philadelphia. “I sometimes refer to it almost as a chronic illness.”

The prognosis for GEP-NETs is often positive, with an average survival of 27 years after diagnosis, according to research. Worth noting: The prognosis varies significantly by stage of the disease, location of the tumors, and other disease characteristics.

Since you have to live with and treat GEP-NETs over time, taking charge of your lifestyle can be a powerful complement to your medical treatment. “I encourage people to not let the disease dictate their life, but rather try to live as functionally as possible with it,” says Dr. Eads. Here are some healthy lifestyle habits that can help you live well with GEP-NETs.

1. Consult Your Medical Team

Treatment for GEP-NETs is very individualized, so it’s important to surround yourself with the right care team. “It is a very multidisciplinary disease, so having a team of people who take care of you is encouraged,” Eads says.

Your care team may include:

• A medical oncologist for diagnosis and treatment
• Surgeons for any procedures that are needed
• Interventional radiologists, who perform minimally invasive procedures with guidance from imaging
• Nuclear medicine physicians, who perform testing or administer treatment using radioactive materials
• An endocrinologist
• A cardiologist
• A geneticist or genetic counselor

Eads also recommends working with:

• A dietitian for an individualized eating plan
• A pharmacist who is knowledgeable about GEP-NET drugs and can help you navigate hurdles that make the treatment difficult to get
• A palliative care team for symptom management
• A social worker or nurse navigator to help connect you with resources and information throughout your care

2. Eat a Mediterranean Diet

Eating healthy is important for anyone with GEP-NETs. Studies have found that a Mediterranean diet, in particular, is beneficial for the prevention and management of various endocrine disorders, including neuroendocrine tumors.

Do your best to consume fruits, healthy fats, lean proteins, vegetables, and whole grains. But Eads stresses that the most important thing is to eat what you can, when you can. “I don’t like to be too restrictive, because people who have cancer often lose weight, and we don’t want that,” she says.

If you’re struggling with eating, work with your healthcare team to create a personalized nutrition plan that aligns with your needs.

3. Stay Active

Research shows that a loss in normal-density muscle is associated with an increase in mortality from GEP-NETs. To prevent muscle loss, the researchers recommend working with your care team to create an exercise and nutrition program.

Start slowly with low-impact exercises, such as walking, stretching, and light biking. And the Neuroendocrine Tumor Research Foundation recommends clearing any new activities with your doctor, who will consider the medications you’re on and surgeries you’ve had.

4. Quit Smoking and Avoid Alcohol

Smoking is associated with neuroendocrine tumor development, including GEP-NETs, according to a review. While researchers didn’t find a link between alcohol and GEP-NETs, Eads says it can exacerbate symptoms, especially for people who have functional tumors — tumors that produce hormones — in their bowels. So it’s best to avoid both alcohol and cigarettes.

5. Stick to a Regular Sleep Schedule

Quality sleep contributes to better cognitive function, mood, and overall health. To improve your sleep, establish a relaxing bedtime routine and stick to a consistent sleep schedule. It’s also a good idea to avoid naps during the day, so you’re not up at night. And try to exercise regularly to improve your sleep quality, Eads recommends.

If your symptoms or treatments are disrupting your sleep, talk to your healthcare team.

6. Manage Your Stress

“Stress can increase your symptoms, so we try to help people with stress reduction,” Eads says. She recommends joining a support group or meeting with a cancer social worker if you’re feeling anxious about your condition or prognosis. The goal, she says, is to make sure you understand you are supported beyond your medical care.

On your own, you can explore relaxation techniques, such as meditation, deep breathing exercises, or yoga, to help lower stress.

These lifestyle changes can help you build an effective and holistic approach to managing GEP-NETs. “I try to help people understand they don’t have what people generally think of as a common cancer, that this is more often a chronic condition that we’re going to manage over the course of their life,” says Eads.

You may not be able to control your diagnosis, but you can take charge of your overall health and manage your GEP-NET journey.