The time between appointments to diagnose or monitor your condition may be days, weeks, or months, which can also be stressful.
Try not to worry too much, however, as NETs are often slow growing tumours and your cancer should not be getting any worse before your next visit. If you are worried, call your doctor or nurse, or talking to your friends and family may help.
The good news is that treatments and support for neuroendocrine cancers are improving all the time, and many people with NETs can lead active, healthy lives, both during and after treatment.
“It was overwhelming and very scary to be faced with a cancer diagnosis but it’s great to know that there are people with NETs out there with long survival rates.”
* Quote from patient who completed an anonymous survey conducted in five countries in 2015
You might experience any of the following emotions after being diagnosed with NETs and during treatment.
Even if you’ve been having tests to find out the cause of your symptoms, you may be shocked to learn these are due to a rare type of cancer. You may find it hard to believe you have cancer, especially if you’ve had no NETs symptoms or if your tumours were found after a routine medical check-up.
Some people with NETs may feel a sense of relief to finally know they have a correct diagnosis, after having gone through so many medical tests and doctors’ visits.
You may feel angry about your diagnosis of NETs and how this could affect your life. You might be frustrated that it took so long to get a proper diagnosis, or angry with doctors who may have dismissed your concerns, or who wrongly diagnosed you with another condition.
You’ll probably have several concerns following your diagnosis. You may be anxious about your NETs treatment, the side effects and how these could affect your life. A common fear among people after treatment for NETs is the fear that their cancer will come back (recur) after treatment.
Many people living with NETs are also worried about the impact on their family life and on their finances.
It’s natural to feel sad when you find out you have cancer. Give yourself permission to cry if you need to. Talk to someone. If your sadness continues for a while, and you lose interest in doing activities that you normally love or can’t see an end to the sadness, then you could have depression.
Please speak to your doctor if this is the case as he or she may be able to prescribe treatment to help you.
People who are diagnosed with a rare cancer such as NETs will often feel isolated from their family or friends who will probably be unfamiliar with the condition. But you don’t have to face this alone. Contact patient support groups in your country to talk to other people with NETs and carers.
Ask your doctor to refer you to a local counsellor who can understand what you’re going through.
Unlike other cancer patients or people with long-term illnesses, many people with NETs will not always look ill or have treatment-related side effects that affect their appearance.
So your friends or family may assume you’re OK and think you have recovered. They may also think you’re just ‘hanging on’, looking for attention. This may make you feel guilty that you don’t fit into society. You also may feel guilty that you could become a burden to your family, or guilty that your diagnosis of NETs could affect your job or finances.
Don’t be afraid to talk to someone about how you feel.
“…I learned that, with the right treatment, the right monitoring and the right surveillance, and being proactive, myself, that I could actually live for a long time, with a reasonably normal life, the same as people who don’t have this kind of illness.”
“…life changes when you’re told you have any form of cancer, you can’t expect it to be as it was yesterday, but you can cope with it today…”
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 carcinoid tumours, GI-NETs, pancreatic NETs and lung NETs, and the symptoms of NETs