Supporting the

Neuroendocrine Cancer Community




  • Do I have Neuroendocrine Cancer – is it a NET or NEC?
  • Which part of my body is affected?
  • Is it growing? What grade is it? What stage? What does this mean?
  • What can I expect from this diagnosis – what effect might my NET/NEC have on me?
  • Who is my main point of contact?
  • Who can I call with any questions?
  • Will I have a clinical nurse specialist to support me?
  • Is it likely that my cancer will spread?
  • Will I need to have any more tests?
  • Have you any written information I can take home with me?
  • Who will be involved and who will lead my care?
  • What other support is available to me / my family?

After treatment or monitoring

  • How is my NET/NEC? Has it changed?
  • What does this mean for me?
  • If on treatment – does this affect my treatment? How?
  • If not on treatment – do I need to start treatment? If so what? And when?
  • Will this mean a change in care team?
  • If so, do I still have access to my nurse specialist/point of contact?

Next Steps

What will happen next and when?

About Treatments

  • What treatments are most suitable for me and my cancer? Do I have to have treatment?
  • What is the aim of treatment?
  • What are the possible side effects?
  • How could the treatments affect my everyday life? – short-term and long-term
  • What do you hope the impact of treatment will be?
  • Will I be able to keep working during treatment? Or do I need to arrange time – off (e.g. for surgery and recovery)?
  • How will I be involved about decisions about my treatment?
  • Can I choose where I go for treatment?
  • Can I get a second opinion about my treatment?

Depending on where you are along the diagnostic or treatment route, one or two of several things could happen at your results appointment:


You might be told that your tests results have confirmed the diagnosis or that more tests are needed.

If confirmed you may then have a discussion about what treatment options there are. You will not be expected to decide that day and should be given some time and written information to help you make a decision on what option to take, if any.

After Treatment or Monitoring

You might be told that things are stable, which means there’s been no significant change in your condition. That’s not necessarily a bad thing, and in fact can be a very good thing if it means your treatment has helped to get your Neuroendocrine Cancer under control.

You might be told that things have improved, for instance if surgery has successfully removed all or part of your cancer or your treatment has caused the tumours to shrink or become less active. Or, unfortunately, you might hear news that isn’t what you’d hoped for – that your cancer has continued to grow or spread despite treatment. You may even be told that new tumours have been identified.

Just as with the diagnosis, you might feel like you just want to be on your own, that you can’t hear anymore at that time – it’s often hard to take in what you’re being told. Reactions like that are totally natural and, as we’ve said before, there’s no right or wrong way to react. Allow yourself time and even if you have left the consultation, don’t be afraid to come back to your team to re-discuss things, as and when you need to. It may be that a different treatment is possible, that may be more effective (it’s not always easy to predict response or tumour behaviour). It may be that available treatment is limited to helping alleviate symptoms only.