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Where to get support

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Emotional health is often affected by serious diseases like cancer.1,2

The road to diagnosis can be long and frustrating, especially with NET,3 and many patients experience a mix of strong emotions when they realize they are dealing with a life-changing disease.1,2

If your thoughts and feelings become overwhelming, it is OK to ask for help and there are many resources available.

Reach out to family and friends for support

Asking for help is not always easy, but getting the support you need can bring relief and make a big difference.

Opening up to your family and friends and letting them know what you are going through in both times of joy and hardship can improve your mood and allow them to provide you with the support they otherwise might not realize you need. Your loved ones can help you through intense times of the disease and treatment by providing a safe space to share your feelings.

While it is not a replacement for professional therapy, finding the strength to share your struggles with those close to you can be a crucial step – they might help you see things from a different perspective and remind you that you are not alone.

Here are some things to consider before talking with family/friends:

  • Write down the thoughts and feelings you would like to express.

  • Think about who you would feel most comfortable sharing your feelings with and who would respond and support you best.

  • Choose a setting that is most comfortable for you to open up.

  • Try not to be hard on yourself. It is normal to feel uncertain or uneasy when talking openly about your feelings, even if it is with people close to you.

Join a patient support group

If you would like to share your feelings with others facing a similar situation, consider joining a patient support group.

In patient support groups, people get together on a regular basis to share their perspectives, knowledge and experience, and help each other with emotional and practical support.4

There are support groups for patients with any form of cancer, but there are also support groups for patients affected by a particular type of cancer, such as NET.

Receiving support from those who truly understand what you are going through is known as “peer support”, which can be a great help during challenging times at any stage of disease.

Participating in a support group may have several benefits, such as:5,6

  • Exchanging information: Gain knowledge about the disease, treatments and medical recommendations

  • Sharing experiences: Share personal experiences in a trusting environment

  • Learning from others: Get advice from other members of the group, like daily routines or setting realistic expectations

  • Helping others: By helping others and passing on your own experiences, you may develop a sense of usefulness

  • Cultivating humor: Humor as a coping strategy can relieve stress and help you discuss difficult issues

  • Building a sense of community: Getting together can decrease the feeling of isolation

  • Making new friends: Meeting people in a similar situation can spark friendships

To find a support group that meets your needs, take a look at the Patient Advocacy Groups (PAGs) page, which includes an overview and links to some of the better-known patient associations and support groups for NET. Many support groups have their own websites or social media accounts and can easily be found by searching online. It might also be a good idea to talk to your care team and ask them if there is a support group they can recommend.

Not every area has a face-to-face support group, but some organizations offer groups that are available by telephone or online. Other groups use a combination of in-person and online meetings.

Seek professional counseling or psychological support

It is completely normal to experience a range of emotions, like stress, anger, or sadness when you are diagnosed with NET or while living with NET. However, if those feelings persist or begin to affect your daily life, seeking psychological/psycho-oncological support or professional counseling might help you better understand your feelings and reactions and help you cope with the challenges you face.7

Studies have shown that counseling provided by psychologists, professionally trained therapists or social workers can effectively reduce anxiety, depression, and overall distress in patients with cancer.8 Moreover, connecting with a counselor can give you strategies to navigate the complexities of NET, allowing you to feel less overwhelmed and regain a sense of control over your situation.7 In addition, you may also have the opportunity to learn how to handle symptoms and side effects, as well as become familiar with tools to manage fears and uncertainties about the future.7

Psychologists and counselors are trained to help you deal with difficult situations, offering an objective perspective and a safe space to talk about your worries.7

Finding the right counselor to support you on your journey is important. To begin your search, you may want to explore the counseling services available at your hospital or cancer treatment center.7 You can also ask for referrals from your doctor, nurse or other members of your healthcare team, since they may be able to connect you with members of your healthcare team, since they may be able to connect you with counselors in your area who specialize in working with patients facing similar challenges.7 It is also worth checking with your health insurance provider to see if they have a list of counselors covered by your insurance plan.7 If you are in a support group, consider reaching out to fellow members and ask if they have any suggestions based on their own experiences.7 Cancer organizations sometimes provide referrals to counselors, and some may even offer limited free counseling via phone or online platforms.7,9,10

There is no “one size fits all” approach

Different approaches work for different people and there is no one type of support that suits everyone. If a specific type of support is not working for you, it is OK to stop and try something new. Try to find the support that feels right for you, and know you do not have to navigate this journey alone!

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Patient advocacy groups (PAGs)

References

  1. Song L., et al. Psychological distress and resilience in patients with gastroenteropancreatic neuroendocrine tumor. Front Endocrinol 2022;13:947998.

  2. Khan MS., et al. Patient Survey of the Physical, Emotional, and Informational Challenges for Patients Living with Neuroendocrine Tumors. Oncol Ther 2020;8:67–80.

  3. Singh S., et al. Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs. J Glob Oncol 2016;3:43–53.

  4. NET - Was nun? Netzwerk Neuroendokrine Tumoren (NeT) e.V. Available at: https://www.netzwerk-net.de/net-was-nun/. Accessed April 10, 2024.

  5. Jablotschkin M., et al. Benefits and challenges of cancer peer support groups: A systematic review of qualitative studies. Eur J Cancer Care (Engl) 2022;31:e13700.

  6. Cancer self-help and support groups. Available at: https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/local-support-groups. Accessed April 10, 2024.

  7. Counseling. ASCOs Patient Information Website – Cancer.net 2012. Available at: https://www.cancer.net/coping-with-cancer/finding-social-support-and-information/counseling. Accessed April 11, 2024.

  8. Blasco T., et al. Patients’ Desire for Psychological Support When Receiving a Cancer Diagnostic. Int J Environ Res Public Health 2022;19:14474.

  9. Psychosoziale Krebsberatungsstellen. Available at: https://www.krebshilfe.de/helfen/rat-hilfe/psychosoziale-krebsberatungsstellen/. Accessed April 11, 2024.

  10. Counselling - Neuroendocrine Cancer UK. 2019. Available at: https://www.neuroendocrinecancer.org.uk/supporting-you/counselling/. Accessed April 11, 2024.

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