This website is intended for an international audience, excluding the UK, United States, Canada and France
This website is intended for an international audience, excluding the UK, United States, Canada and France
Information about the emotional, physical and social challenges of living with NETs.
Steve
If you’re living with neuroendocrine tumours (NETs) and you’re looking for clinics in your region and patient support services, then you’ve come to the right place. Search through the Get Support resources listed here to see if any of these can help you.
After being diagnosed with neuroendocrine tumours (NETs) or neuroendocrine neoplasms (NENs) you may find it easy to express your thoughts. Or you may find it hard to describe how you’re feeling and why.
It can be difficult to take in this life-changing news – you might hear the words but not believe them. So you may want to wait until you feel ready to discuss your thoughts.
Talking to your doctor or other members of your NET team can be a daunting at times, but don’t be afraid to ask as many questions as you need. They are they to help you through your journey with NETs and provide you with the best care. They will not mind if you ask the same question again or need to have information repeated to help you understand.
Below are some tips that might help you get the most out of consultations with your NET team. See also the questions to ask your doctor page of this website.
Write down anything you would like to mention or questions you would like to ask in advance.
Consider taking a pen and paper with you so that you can take notes during the conversation.
Try to book a long appointment if possible so that you will have enough time for a detailed discussion.
Ask if there is a list of frequently asked questions in a brochure if you feel awkward asking too many questions. Or refer to the questions to ask your doctor page of this website.
Consider asking a friend or family member to come with you to listen and help you remember what was said.
Ask if you can record the appointment on your smartphone or other device so you can listen again to what was said afterwards.
Ask for any unfamiliar terms or medical words to be explained. Do not be afraid to ask your doctor or specialist nurse to repeat something if you have not fully understood or ask them to explain something in a different way. Ask them to draw a diagram if that would help.
Everyone has a different need for information so let your NET team member know how much information you would like and when.
Do not be afraid to ask for a second opinion from another NET team member. Ask for time to consider if you have trouble making a decision for an examination or treatment.
Ask for the contact details of the person you should call after the appointment if you have any more questions. This is usually a specialist NET nurse if there is one in your area. He or she will be happy to clarify anything you did not understand during your consultation.
It is up to you to decide when to talk to your friends and family about your diagnosis. Sharing your hopes, fears and medical updates with people can bring you closer and ease your burden.
First, think about how much you want to share. You may want to briefly explain what type of NETs you have, which treatments you might need, and what your long-term outlook or your prognosis is.
People usually tell their spouse or partner first, then a few other family and close friends. It is also important to tell your children so they can understand.
As you talk with others, you may want to write down questions that come up so that you can discuss them with your doctor or your multidisciplinary NET team.
You may not feel comfortable or want to explain your condition to everyone. You could consider telling one or two close friends, either face-to-face, or over the telephone, who could then help you explain your condition to your wider circle of friends and family.
As we live in a modern age, and if you want to share your thoughts with a group of close family or friends who may not live near to you, you could try keeping in touch with them through social media by creating a private Facebook group or by using a chat app on your smart phone such as WhatsApp, or even a monthly email, letter or phone call to let them know how you are doing.
“It is difficult to give advice, but be open, talk about everything. For me it is important not to hide information.”
Opinions expressed in the videos are purely individual, personal opinions of the patient, and by no means constitute treatment advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
“After diagnosis, you have to tell people – you cannot bottle something like that up.”
Opinions expressed in the videos are purely individual, personal opinions of the patient, and by no means constitute treatment advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
“My first reaction when I read the word ‘carcinoid’ was to hide it from everybody, not to tell anybody, like it would go away.”
Opinions expressed in the videos are purely individual, personal opinions of the patient, and by no means constitute treatment advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
Your friends may also be looking for a comfortable way of talking to you about your diagnosis and living long term with your cancer. They may want direction on how to behave with you. Let them know how they can help you. This gives them a chance to understand your feelings and find out more about your needs.
Tell them about this website if they would like to learn more about NETs, for example, or direct them to other information they can read if they are interested.
Some people may not be able to cope or relate to what you’re saying about your NETs diagnosis. They may be uncomfortable about discussing your condition, and they may choose to avoid you so they don’t have to do this.
Don’t allow yourself to be discouraged by such reactions – not everyone is comfortable talking openly about cancer. Some are unable to listen because of their own experiences or their own emotions, not yours.
Don’t let this become your problem. In some cases, they may not the best ones to talk to at that point. So look for other friends and family who can handle your news better.
Sometimes, those people who did not want to hear about your diagnosis at first might feel ready to discuss this at a later date. So try to be open about talking about your NETs when they’re ready.
Talking in an open, sensitive manner about your condition to your children or grandchildren can be beneficial. Many young children can sense when there is a problem in the family. If they sense that something is not right but cannot grasp why, they may start imagining the worst.
So have an honest conversation with children and teenagers using language they can understand. With very young children, you may want to use dolls or pictures to do this. Let them know what any changes in your health could mean for them in their everyday life. Their reactions and needs will vary depending on their age.
“It was very hard for me to speak to my children, to say, ‘I have cancer’, because I didn’t know a lot about this type of cancer.”
Living with NETs
This section of the website gives you information about the emotional, physical and social challenges of living with neuroendocrine tumours.
Remember to speak to your doctor about your condition and ways of coping; this section should not replace their professional advice.
Read practical tips from others to help make your life with NETs easier.
Patient support groups for NETs can often provide social and emotional support.
Learn about the different types of NETs, symptoms of NETs, their diagnosis and treatment.
Loading ...
