Tips for Living with Gastrointestinal and Pancreatic Neuroendocrine Tumors
The journey for patients with gastrointestinal and pancreatic neuroendocrine tumors, also known as GEP-NETs or NETs, can be extremely challenging. By the time many people learn that they have the disease, they may have already experienced several frustrating years in search of a diagnosis. Once the diagnosis of NETs is made, it’s normal to feel afraid, frustrated, overwhelmed – or all of the above. Those feelings may be tempered by taking greater control over your health, your life and your disease.
It’s important that you get the emotional support that you need to help you manage your disease. A support group can be a good way to connect with others with NETs who may have similar experiences and concerns. If you aren’t sure where to turn, ask a member of your healthcare team or other patients about support groups in your area or you can get started by searching on the following websites:
- Association of Cancer Online Resources
- Caring for Carcinoid Foundation
- Government websites such as the National Cancer Institute
- Neuroendocrine Carcinoid Cancer Awareness Network
- NorCal Carcinet Community
- The Carcinoid Cancer Foundation
- The Healing Net Foundation
For Additional Information
Take charge of your own health by learning as much as you can about NETs. Talk to members of your healthcare team, as well as other patients and caregivers who have experience with NETs. National GEP-NETs organizations and advocacy groups can be great resources, too. You can find a listing of some such organizations under the “Finding Support” tab on this website. Be proactive in educating yourself about GEP-NETs.
Monitor Your Care Plan
No one knows how you are feeling better than you do. Be prepared to record and report any changes or new symptoms to your doctor. Make a point to regularly review your disease management plan with your caregiver and also with your physician during office visits.
Know Your Options
There are treatments that may help you take action against your cancer. It’s also important to understand the differences among treatments. Each patient is unique; therefore, treatment may vary among patients. Get informed about your treatment options, get empowered and talk to your doctor.
You are your own best advocate. Don’t be afraid to speak up if you need help from friends and family. If they ask you how they can help, give them specific things they can do, such as picking up a few groceries or being a sounding board when you need to talk.
Be Proactive During Doctor Visits
Always go to doctor visits with a list of questions at the ready, and let your doctor know when you don’t understand something. Click here for more guidance on having productive doctor visits.
Take Care of Yourself
Doctors’ appointments, medications, insurance claims – there’s a lot to keep track of, and taking care of yourself can get lost in the shuffle. It shouldn’t. Make time for exercise, enjoy social activities with family and friends, try to get enough sleep and maintain a healthy diet. If all that sounds like too much, take small steps, focusing on one goal at a time. And be mindful of your stress levels and emotional state. If you need guidance in any of these areas, don’t be afraid to ask a member of your healthcare team or someone in your support group, if you have one. They can make suggestions to help keep you on track.