Supporting the

Neuroendocrine Cancer Community

Being Prepared

Any type of cancer can cause your life to change in all kinds of ways, and Neuroendocrine Cancer is no different. So being prepared for those changes, and spending a little time thinking about how you want to respond, is usually a very good idea.

Whether you want to know every detail of what a Neuroendocrine Cancer can mean or would rather your care team just got on with it, theres a lot to be said for being prepared.

Everyone deals with illness differently. Some people want to know exactly what’s happening, others prefer doctors to keep things as general as possible -and it’s completely up to you how you approach your life with a Neuroendocrine Cancer.

However, trying to prepare for what is to come can help. This doesn’t mean you suddenly need to spend hours reading medical textbooks or scouring websites about the neuroendocrine system. But it does mean that getting your head around some of the facts and potential implications of a NET or NEC diagnosis can put you in a stronger and maybe less stressful position.

Being prepared for treatments, for instance, can help you know what to expect, what is usual and what’s not – for example, what side effects could happen and how to deal with them, if they occur. What are the aims of treatment? Are there alternatives?

Being prepared for appointments and conversations with your medical team can help you to get the best out of your consultation – think of the questions you may want to ask – that may help you to get the information you need, write them down to take with you.

And being aware of the effect your diagnosis may have on those around you may help you to prepare for those who might act or treat you differently: some may carry on as normal, others may offer help in a variety of ways, some may drift away or not know what to do.

This may be helpful, annoying, upsetting or up lifting. Whilst we may not be able to change how others react or behave, we can alter how we respond to them.

Any type of cancer can cause your life to change in all kinds of ways, and Neuroendocrine Cancer is no different. So being prepared for those changes, and spending a little time thinking about how you want to respond, is usually a very good idea.

Speaking With Your Doctor

Letting your care team know about your overall and long-term health, along with how you’re feeling now, is a vital part of getting the right diagnosis and care. It helps to ensure the right tests are done, and can guide decisions not only about which treatments are right for you, but also about whether you need treatment at a particular time.

It’s really important that you tell your doctors as much information as possible about your health – especially if anything changes.

Keeping a symptom diary or using a health tracker App or even using the blank notes pages at the end of this handbook, may be helpful for you, to write down or record any information you may find helpful for your appointment. It can be easy to forget things just before or during a consultation, so this may be useful – for example, a list of current medicines, current symptoms and/ or any questions you may have.