Understanding your diagnosis
Your test results provide a lot of information about your cancer.
This may include:
- the cells it started in (cancer type)
- whether it has spread from where it started (cancer stage)
- whether it is likely to grow quickly or slowly (cancer grade).
Your specialist uses this information to explain how the cancer could affect you in the future (your prognosis), and what your treatment options are. Your specialist may arrange further tests if more information is required.
What you need to know
Types of neuroendocrine tumours (NETs)
Neuroendocrine tumours are less common cancers that start in neuroendocrine cells.
These cells are found in different organs throughout the body, but mostly in the gastrointestinal tract (gut), lungs and pancreas. Normal neuroendocrine cells can help to control body functions by releasing hormones into the bloodstream in response to signals from the nervous system.
There are many different types of NETs depending on:
- the body organ or location where they start
- whether or not they produce excessive amounts of hormones (functional versus non-functional NETs).
Location of NETs
NETs can start anywhere in the body, but some of the main sites are:
- Gastrointestinal NETs (GI NETs) start in the gastrointestinal tract (gut), including the stomach, oesophagus, duodenum, small bowel, large bowel, appendix and rectum.
- Pancreatic NETS (PNETs) start in the pancreas.
- Lung NETs start in the lungs.
- Merkel cell carcinomas start in Merkel cells in the skin.
- Neuroblastomas are childhood cancers which start in the adrenal glands.
Functional and non-functional NETs
Non-functional NETS
These NETs do not produce high levels of hormones. The symptoms they cause depend on the size and location of the NET.
Non-functional NETs are much more common than functional NETs.
Functional NETs
These produce large amounts of hormones which cause symptoms. The pattern of symptoms depends on the hormone produced.
Carcinoid syndrome is the most common group of symptoms caused by functional NETs. It occurs when the NET releases the hormone serotonin and other substances into the bloodstream. This can cause symptoms including facial flushing, diarrhoea, wheezing or fast heart rate.
Carcinoid syndrome is usually caused by functional NETs in the lower part of the small intestine or the upper part of the large intestine.
Other functional NETs often start in the pancreas, and are named based on the hormone they produce:
- insulinoma
- gastrinoma
- glucagonoma
- somatostatinoma
- VIPoma.
Ask your doctor to explain what type of NET you have and what you should know about it.
Cancer grade
The grade of a cancer is based on how abnormal the cells look under a microscope. Cancers with very abnormal cells are likely to grow and spread faster.
The cells in neuroendocrine tumours can be:
- Well-differentiated – the cells are abnormal but still look similar to normal neuroendocrine cells. These cancers usually grow and spread slowly. (G1, G2 & G3 NET)
- Poorly-differentiated – the cells are very abnormal and are growing and dividing quickly. These cancers usually grow and spread quickly. They can sometimes be called neuroendocrine carcinomas (NECs). (G3 NEC)
Cancer stage
The stage of a cancer is how large it is and how far it has spread when it is first diagnosed.
The stage is determined from the results of scans, biopsies and other tests in a process known as staging.
Knowing the stage of a cancer helps doctors to work out the best treatment options. It also means the person with cancer can fully understand their situation and discuss any concerns they have.
Different types of NETs can be staged in different ways, but the numbered staging system is often used:
- Stage 1 – the cancer is small and has not spread from where it started.
- Stage 2 – the cancer is larger and may have spread into nearby lymph nodes.
- Stage 3 – the cancer has spread to nearby tissues or lymph nodes.
- Stage 4 – the cancer has spread to other areas of the body. This is also called metastatic neuroendocrine cancer.
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What to ask or talk about
Talking about prognosis
Prognosis means what is likely to happen to you in the future because of your cancer. You may find it hard to talk about prognosis but it can help you make decisions about the treatment and care you want.
Everyone’s cancer is different, and everyone responds differently to treatment. Because of this, doctors can’t tell you exactly what will happen to you. Instead, they can give you the best information they have about what to expect.
Doctors work out prognosis based on statistics. These show what happens in large groups of people with cancer. They cannot predict what will happen to you or any other individual person.
Checklists
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Next steps
Treatment planning
Your specialist will share information about you and your cancer with a multidisciplinary team (MDT) to decide the best treatment options for you.
You may need more than one type of treatment or have a choice of treatments. You may also need to see other specialists during treatment planning.
Dealing with your diagnosis
Getting a cancer diagnosis is very distressing for the person with cancer, and their carers, family and friends. Different people react in different ways. They can be upset and angry or just in shock. Many people find it difficult to take in all the information and understand what it will mean for them.
The situation can be especially difficult for people who get a diagnosis of advanced cancer.
If you need to speak to someone about your diagnosis, you can call the Cancer Council on 13 11 20.
Other resources we recommend
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NeuroEndocrine Cancer Australia1399 287 363
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Cancer Council Mon-Fri 9am-5pm13 11 20
