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Where to get support

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Emotional health often suffers with serious diseases such as cancer.1,2

The road to diagnosis can be long and frustrating, especially with NET,3 and many people are left with fears, worries, uncertainties and a sense of being powerless when they realize that they will have to cope with a life-altering disease.1,2

If emotional stress becomes overwhelming, you should not be ashamed to admit that you cannot handle it all by yourself. It is ok to reach out for help and support to share feelings, needs, and concerns. There are many helpful resources available.

Reaching out for support from family and friends

Asking for help is not always easy, but heeding the advice “A problem shared is a problem solved,” and finally getting the support you need can bring relief and make a huge difference.

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

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

If you already know that a conversation with your loved ones might be challenging for you, it can be helpful to consider the following points beforehand:

  • Take a moment to write down your feelings, thoughts and what you would like to express.

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

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

  • Be gentle with yourself. It is okay to feel uncertain when you open up to family and friends, but take a moment to acknowledge and feel proud about this important step to improve your well-being.

Joining a patient support group

If you have the desire to share your feelings with others facing a similar situation, it could be worth a thought to join a patient support group.

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

While certain support groups may accommodate people with any form of cancer, others are specially tailored to those 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, whether it is shortly after your diagnosis or as the disease progresses.

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

  • Informational support: Transfer of knowledge about the disease, treatment methods or recommendations

  • Shared experience: Sharing personal experiences in an environment of trust and relating to the patient journey of others

  • Learning from others: Identification with other group members can help learn from their experiences, like handling the treatment or implementing new daily routines, develop realistic expectations and reduce feelings of uncertainty

  • Helping others: By helping others and passing on own experiences, the group members develop a sense of usefulness and meaningfulness

  • Cultivating humor: Humor as a coping strategy can relieve perceived distress and help discuss embarrassing issues

  • Sense of community: Getting together can decrease a sense of isolation

  • Making new friends: Meeting people in a similar situation promotes contact between those affected

To find a support group suitable for you, take a look at our subpage on Patient Advocacy Groups (PAGs), which includes a detailed overview and links to international patient associations and support groups. Apart from that, many support groups have their own websites or social media accounts and can easily be found by researching online. It might also be a good idea to talk to your medical team or hospital staff and ask them if there is an appropriate group they can recommend to you.

As there is not always a specific face to face support group in every area, some organizations offer groups that are available by telephone or as an online group whereas others use a combination of in person and online meetings. Another option is to volunteer and start a support group on your own to help others facing a similar situation in your area.

Receiving professional counseling or psychological support

It is completely normal to experience a range of emotions, like stress, anger, or sadness upon receiving a diagnosis or while living with a NET. However, if you recognize that these feelings persist or begin to affect your daily life, seeking psychological/psycho-oncological support or professional counseling might help you understand your feelings and reactions and 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, or overall distress in patients with cancer.8 Moreover, connecting with a counselor can support you gaining strategies to navigate the complexities of a NET diagnosis, allowing you to feel less overwhelmed and regain a sense of control over your situation.7 Apart from that, you may also have the opportunity to learn effective ways to handle symptoms and side effects, as well as 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, thanks to the principle of confidentiality.7 Depending on your situation and needs, you may begin to recognize the benefits of counseling after just a few sessions.7

Finding the right counselor to support you on your journey ahead is incredibly important. To begin your research, you may want to explore the counseling services available at your hospital or cancer treatment center.7 Another option is to ask for referrals from your doctor, nurse or other members of your healthcare team, as 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 Also, if you join a support group, consider reaching out to fellow members and ask if they may have suggestions based on their own experiences.7 Additionally, you could search online for cancer services organizations which often provide referrals to counselors, and some may even offer limited free counseling via phone or online platforms.7,9,10

No one size fits all approach

Always remember: Different approaches work for different people and there is no one type of support that suits everyone. If you recognize that a special type of support is not working for you, it is totally ok to stop it and try something new. Do not hesitate to reach out and find the support that feels right for you. 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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