Navigating GEP-NETs: Build Your Support Network

If you’ve been diagnosed with a gastroenteropancreatic neuroendocrine tumor (GEP-NET), you might be feeling confused and alone. Since a GEP-NET is a rare form of cancer, you may assume there aren’t a lot of resources to help you cope.

But, in fact, “There are a lot of resources out there. You just have to know who to ask about them,” says Jennifer Eads, MD, an oncologist who specializes in gastrointestinal cancers at Penn Medicine’s Abramson Cancer Center in Philadelphia. “There are a lot of people with GEP-NET, so you don’t need to feel alone.”

GEP-NETs tend to grow slowly, which is why Dr. Eads approaches them like a chronic condition that patients need to manage over time. “It can be challenging, because you may be on some form of active therapy for years,” she says.

When you’re juggling doctor’s appointments and your medical needs, it’s easy for your mental health to become an afterthought, says Sigall Cahn, LCSW, associate director of clinical services and lead of multiple clinical programs at Cancer Support Community Los Angeles. “But it’s important to make sure your emotional needs are also being addressed.”

The right support network can help you do just that. Follow these steps to get the support you need.

1. Build the Right Care Team

Because GEP-NETs require consistent care, you’ll need a medical care team to monitor your disease progression, mental health, and treatment. Eads stresses that it’s a multidisciplinary disease, meaning you’ll need to work with several doctors and medical professionals to get holistic care. These may include:

• Medical oncologists, for diagnosis and treatment
• Surgeons, in case you need a procedure as part of your treatment
• Interventional radiologists — specialists who perform minimally invasive procedures using imaging for guidance
• Nuclear medicine physicians — specialists who perform testing or administer treatment using radioactive materials

Aside from physicians, Eads also recommends working with a:

• Dietitian to help you develop an individualized eating plan
• Pharmacist who has experience in GEP-NET medication and can help you through any hurdles that may make treatment difficult to obtain
• Palliative care specialist to help with managing symptoms
• Nurse navigator, who can connect you with these and other resources

2. Speak to a Mental Health Professional

A cancer diagnosis is a heavy burden to bear that can affect your mental health. A study of 200 people with GEP-NETs found that 31 percent experienced anxiety and approximately 18 percent experienced depression.

That’s why it’s important to have a mental health professional who can help you process your emotions. “Receiving a cancer diagnosis is a unique experience, and you need to be able to talk to someone who understands the depth of what you’re going through,” Cahn says.

Work with your oncologist to be connected with a licensed therapist, social worker, or psychologist who has experience counseling people living with cancer.

3. Lean On Loved Ones

Ask friends and family members to drive you to appointments, sit with you during treatments, assist you after surgery, and just check in regularly to make sure you’re okay. It might feel hard to reach out and ask for support, but, “It’s essential to ask for help and feel like you’re not alone in this,” Cahn says.

4. Join a Support Group

Finding a community of people who understand what you’re going through provides a platform to share experiences, exchange valuable information, and offer emotional support, says Cahn.

Plus, being a support for other people who have GEP-NETs can be its own form of therapy, says Eads. “Some people feel empowered by providing knowledge and emotional support to others, fundraising, and just being an active participant in furthering research or knowledge about their disease,” she explains.

Check out organizations such as the Neuroendocrine Cancer Awareness Network (NCAN) and Neuroendocrine Tumor Research Foundation (NETRF), which have in-person and online support groups, events, and meetups.

5. Engage in Activities With Your Loved Ones

Caregivers need support, too. Invite them to attend support group meetings and informational sessions with you.

Centers that offer yoga and tai chi for cancer patients often encourage caregivers to join in. Your loved ones are also feeling the anxiety and weight of your diagnosis, and being around other caregivers who understand can be therapeutic.

“The goal is for all parties involved — the patients and the caregivers — to be taking care of their mind and body throughout the experience,” Cahn says.

6. Take Advantage of Resources From Advocacy Organizations

Many organizations offer resources online and in person to help you learn more about your disease, the latest treatments, trials, research, and more.

In addition to NCAN and NETRF, organizations such as the North American Neuroendocrine Tumor Society, the Healing NET Foundation, and the Carcinoid Cancer Foundation offer educational materials, ways to connect with experts in the field, and guidance on managing the various aspects of life with a GEP-NET.