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
Bile duct cancer type
There are 3 main types of bile duct cancers or cholangiocarcinomas:
- intrahepatic – These start in the bile ducts inside the liver.
- hilar or perihilar – These start just outside the liver where the right and left bile ducts join. They are also known as Klatskin tumours, and make up about 60% of bile duct cancers.
- distal – These start in the lower part of the bile duct, which passes through the pancreas and connects to the small intestine.
Hilar and distal bile duct cancers are located outside the liver and are sometimes described as extrahepatic bile duct cancers.
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.
There are different staging systems for different cancers. The most common ones are the TNM and numbered staging systems. Blood cancers have their own staging systems.
The TNM system measures three categories:
- T (tumour) – how large the tumour (cancer) is
- N (lymph node) – whether it has spread into any of the surrounding nodes
- M (metastasis) – whether it has spread to other parts of the body and formed secondary cancers.
Numbered staging system
The numbered system uses the TNM information to give a stage number to the cancer:
- Stage 0 – abnormal cells are present but have not spread from where they started. It is also known as carcinoma-in-situ and may develop into cancer in the future.
- Stage 1 – the cancer is small and has only spread a little into nearby tissues. It has not spread to any lymph nodes or other body areas.
- Stage 2 and 3 – the cancer is larger or has spread into nearby tissues or lymph nodes.
- Stage 4 – the cancer has spread to other areas of the body. This is also called metastatic cancer or advanced cancer.
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.
- Grade 1 (low grade) – the cells look similar to normal cells and are growing and dividing slowly.
- Grade 2 (intermediate grade) – the cells don’t look like normal cells and are growing and dividing faster than normal cells.
- Grade 3 (high grade) – the cells look very abnormal and are growing and dividing quickly.
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.
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.