Talking about NET with family and friends
The diagnosis of a neuroendocrine tumor (NET) is life changing to everyone involved – be it the patient, family members or close friends.
Telling others you have cancer can be difficult. You may feel uncomfortable discussing personal matters, or may be unsure of their reaction, or simply want to protect them from the distressing news.1
However, talking about the disease and sharing your expectations and fears may help you feel less alone and ease the burden.2
The suggestions below may help you with these difficult conversations.
Telling others about my diagnosis
Some people prefer to tell their entire network of family and friends about their diagnosis, while others may carefully select only one or two of their closest relatives to confide in. Some people even choose to keep their diagnosis entirely private – not even telling their spouse/life partner or children.3
It is completely up to you who you decide to inform about your condition. However, engaging in an honest conversation with at least your inner social circle may provide a sense of relief.4
If you are wondering who you should tell your diagnosis, it could be helpful to start by creating a list of people you would like to talk to in person. A common approach for many people is to initially share their condition with their spouse or partner and their children (depending on their ages), followed by other family members. For individuals living alone, it might be more helpful to let close friends know about the situation.4
If talking about your disease is an emotional burden for you, and you would prefer to limit the number of times you have to have this stressful conversation, you could consider having a trusted friend or family member explain your condition to your broader circle of family and friends for you. Just be sure to let them know what information you are happy for them to share and what they should avoid sharing.4
People with NET who are still working may have mixed feelings about whether or not they should inform their colleagues/co-workers. Openness may lead to a greater understanding of the overall situation and any changes that may come with it. On the other hand, many people prefer to keep their private and professional lives separate so that they are not treated any differently than usual.3 If you want to share your diagnosis, consider communicating it in a well-prepared email or short statement during a meeting.4 For those who work outside the office, talking to colleagues individually or in small groups gives a more personal touch and the opportunity to address any immediate questions they may have.
How to start a conversation about NET
The following suggestions may help you start a conversation with family and friends:
Communicate your diagnosis when you feel ready – it is your decision when to talk to your loved ones.
Try to take your time and choose a quiet and appropriate setting to break the news in a mild and gradual manner.
If you are struggling to find the right words, it may be helpful to write down notes beforehand, so you do not forget the key points you want to share.5
Be prepared for questions. You may also want to consider answers to likely questions, but do not feel pressured to answer all of them.1
Sharing the news of your diagnosis in a factual manner, could be a good option.3
If it is clear that the NET is not life-threatening at the moment, you should share this information right at the beginning of the conversation. This will avoid creating unnecessary fear.3
Make sure the person you are talking to understands what you are explaining before you move on.2
It is OK to set boundaries. There is no need to disclose every detail of your illness or diagnosis to anyone.
Knowing that you are going to share difficult news with your family can make it hard to find the right words. Try to start the conversation in a way that is most natural to you. Consider something like, “This is not easy for me, but I have something to tell you.” Then build up the conversation slowly, one step at a time.3
Sometimes giving the news face-to-face can be exhausting. If you feel more comfortable keeping a little distance to those you want to inform, share your diagnosis over the phone, in a letter, by email or in a chat or text message.2,3
Deciding how much information to share
Before telling your loved ones about your NET diagnosis, it might help to think about how much information you want to share, keeping in mind that different relationships may require a different level of information.
It is up to you how much detail to share with each person, but a good starting point for a conversation about NET might be to explain what kind of cancer you have, which treatments you probably need, and what your long-term prognosis may be.1,4
When you talk with your children, it can feel overwhelming, especially if they are still young.1 However, children can quickly sense something is wrong and tend to worry more if they feel that important news is being kept from them. Experts advise to explain the illness to them as early as possible.1,3,6 When discussing your cancer diagnosis with children, try to use age-appropriate language. If you are talking to younger children, you may have to simplify the explanation. For older children or teenagers, a more detailed explanation can help to reduce fear and feelings of helplessness.6 In general, having an honest conversation about NET helps children to cope with the new situation.1
Handling the emotions and reactions of your loved ones
Hearing about your NET diagnosis may cause your loved ones to have many different reactions – ranging from supportive gestures, to crying, denial or anger. Some people let their emotions take over at first, feeling sad, uncomfortable or frightened about the possibility of losing a loved person. Some say nothing at all because they are afraid to say the wrong thing or they want to avoid this topic completely. However, others may respond constructively and immediately offer support.3
It is OK to set boundaries and clearly communicate which reactions you are willing to face and which are too much for you. Keep in mind, you should not end up acting as a comforter for your loved ones.3 If you are at a loss for words, do not worry about silences. Simply sitting together, hugging and holding hands is sometimes the best way to overcome fears and difficulties and may say more than any words.2
As you talk to your loved ones, they may have a variety of questions about your disease, which you may or may not be able to answer. You may want to write down the questions so you can discuss them with your NET care team or tell your loved ones to visit myNETjourney.com to find out more about NETs for themselves and learn how they can best support you on your journey ahead.
Once you have finally shared all that you wish to share about your diagnosis, it is OK to switch the topic of the conversation to something else.
Sharing your diagnosis can help you cope with the situation
Telling those close to you about your diagnosis may help you cope and feel less alone. By opening up, you can take control of what information to give, prevent misunderstandings and allow people to offer support and share their strength.1,4
Additionally, some people find that by talking to family and friends, they begin to solve problems and think about disease-related issues in a more constructive way since their loved ones may ask questions they had not thought about before.4
References
Telling friends and family - Cancer Council. Available at: https://www.cancer.org.au/cancer-information/after-a-diagnosis/telling-friends-and-family. Accessed April 26, 2024.
How to tell people you have cancer - Macmillan Cancer Support. Available at: https://www.macmillan.org.uk/cancer-information-and-support/diagnosis/talking-about-cancer/how-to-tell-people-you-have-cancer. Accessed April 26, 2024.
Mit der Familie über Krebs reden - Deutsche Krebsgesellschaft. Available at: https://www.krebsgesellschaft.de/onko-internetportal/basis-informationen-krebs/leben-mit-krebs/angehoerige-und-freunde/mit-angehoerigen-und-freunden-ueber-krebs-.html. Accessed April 26, 2024.
Telling Others About Your Cancer - American Cancer Society. Available at: https://www.cancer.org/cancer/diagnosis-staging/telling-others-about-your-cancer.html. Accessed April 26, 2024.
Talking With Your Spouse or Partner About Cancer - ASCOs Patient Information Website - Cancer.net 2012. Available at: https://www.cancer.net/coping-with-cancer/talking-with-family-and-friends/talking-about-cancer/talking-with-your-spouse-or-partner-about-cancer. Accessed April 26, 2024.
Talking With Children About Cancer - ASCOs Patient Information Website - Cancer.net 2012. Available at: https://www.cancer.net/coping-with-cancer/talking-with-family-and-friends/talking-about-cancer/talking-with-children-about-cancer. Accessed April 26, 2024.