Caring for someone diagnosed with NET

What does it mean to support someone diagnosed with neuroendocrine cancer?

The effects of cancer such as a neuroendocrine tumor (NET) typically extend beyond the patient and also affect spouses or partners, family members and friends who share the patient’s difficult journey ahead.¹

If someone close to you has been diagnosed with NET, accepting such a serious diagnosis and watching your loved one suffer could be incredibly difficult. You may feel like you are completely unprepared about how the disease will affect you and your loved one – both physically and emotionally.^2,3 However, informing yourself as much as you can about the disease and what to expect in the future may help reduce your uncertainty and feel more comfortable. The more you know, the better prepared you will be for the journey ahead.

Caring for someone with NET may require a large amount of your time and energy. You may have to juggle many different roles and tasks at the same time. This makes caring for someone with NET physically, emotionally, socially, and financially challenging.² There may be many unexpected challenges or situations you have never thought about before, which can cause you to feel like you are on an emotional rollercoaster. With all these new, intense and unpredictable feelings and responsibilities, it is common to be overwhelmed and stressed.² However, you are not alone: Other people looking after someone with a cancer share these feelings and it is completely normal to experience both the positive and negative emotions. Trying to acknowledge and accept these feeling

s may help you deal with the situation. Sharing your feelings with others who can support you and may also help.⁴

How can I help someone close to me who has been diagnosed with NET?

Support from family and friends can make a huge difference to the quality of life of someone with cancer.⁵ Support can take many forms – whether it be in helping with daily needs or providing emotional support.

Here are a few ways you can provide support along the journey with neuroendocrine cancer:

Remember, everyone is different and therefore the needs and level of support your loved one needs is up to them and may change throughout the course of the disease. Depending on disease stage, physical and emotional condition or before/during/after treatment, they may still be able to do many things on their own or they might need a lot of help right away.

Whenever possible, encourage your loved one to be independent for as long as possible. Furthermore, try to let your loved one feel as if they still have some control over their life – it is difficult to accept help when the feeling of independence is lost.

Where can I find the information I need to understand the disease?

To support your loved one the best way possible, it is important to learn as much as you can. There are many topics you can read up on, such as the disease itself, treatment options and the side effects of treatment, disease progression, and so on. Other important topics include the emotional impact of a NET diagnosis, psychological therapy options and community services/resources.

If your loved one is OK with you going to their medical appointments with them, it is a good way to gain knowledge on neuroendocrine cancer. In these appointments you can ask specific questions to the cancer care team.

Reading brochures and informational leaflets or doing online research can be helpful. However, when using the Internet, make sure to be cautious about the sources you rely on. Make use of the services of patient advocacy groups or take a closer look at myNETjourney.com to obtain trustworthy information.

Another way to get informed about NET is to join a support group for family and friends of someone with cancer. Seeking peer-to-peer support and talking to people in a similar situation can be a great source of reassurance and can help you feel less alone. Ask your HCP about local NET support or advocacy groups for family and friends in your area or visit myNETjourney.com for more information.

Overall, being informed can help you to better support your loved one, especially when they are feeling overwhelmed. However, keep in mind that it is important to regularly consult and speak to a knowledgeable healthcare provider to make sure the information you gather matches the specific diagnosis and treatment plan for your loved one.

What can I do if my loved one finds it difficult to accept help?

Some people do not want help, or find it difficult to accept help, because knowing they cannot do as much as before makes them feel helpless, frustrated or dependent on others.

Try to respect their decision and not take it personally, but make sure they know you are there if they change their mind.

Sometimes it can be helpful to give the person diagnosed some time to accept the diagnosis and adjust to the changes. You could offer to help again in the future or suggest different options for help and let your loved one decide what help is needed in their own time.

In general, introducing changes slowly, encouraging independence for as long as possible and reassuring your loved one that they will still play an active role in care decisions may make it easier for them to accept support.

How might my role change over time?

As the disease progresses, your loved one may no longer be able to do the things they were able to do before and may rely on you more and more as time goes on. As a result, your role and how you support that person may change and might take up more of your time, energy and emotional resources.

It’s natural to feel confused and overwhelmed in this situation, so try not to worry. Many people caring for someone with cancer say they adapted to the new situation and roles over time.

It’s important to be open and honest with your loved one to ensure their and your own needs are being met. Do not hesitate to ask for outside help to care for your loved one if you feel it is too much for you to do alone.

Check out the other resources for family and friends on myNETjourney.com

If you are looking for more information, take a look at the empowering webinar “When someone you care about has a diagnosis of neuroendocrine cancer” with Catherine Bouvier, a specialist nurse and CEO of Neuroendocrine Cancer UK (NCUK), or explore how other individuals manage their loved one’s NET diagnosis in our webinar for families and friends.

References

1. Akechi T., et al. Psychological distress experienced by families of cancer patients: preliminary findings from psychiatric consultation of a Cancer Center Hospital. Jpn J Clin Oncol 2006;36:329–332.

2. Sun V., et al. Caring for the informal cancer caregiver. Curr Opin Support Palliat Care 2019;13:238–242.

3. Berry LL., et al. Supporting the Supporters: What Family Caregivers Need to Care for a Loved One With Cancer. J Oncol Pract 2017;13:35–41.

4. Caring for the Caregiver. National Cancer Institute (NCI). 2019. Available at: https://www.cancer.gov/publications/patient-education/caring-for-the-caregiver. Accessed May 23, 2024.

5. Pasek M., et al. Model of Social Support for Patients Treated for Cancer. Cancers 2021;13:4786.