There’s no denying it, for even the most positive of people, being diagnosed with cancer will come as a terrible shock. Many bowel cancer patients describe everything being ‘a bit of a blur’ after they are told. If possible, it is important not to make too many decisions about what happens next, in your initial diagnosis session.
First, you’ll need to let the news sink in, and seek support from friends and family.
As the news does sink in and you are ready to move onto considering treatment options, the most important thing to remember is that it is your body you are discussing. Certainly, your medical team are the experts in the disease but it is your life, your illness, your body.
Don’t be rushed into making decisions before you’ve had a chance to consider them and don’t be frightened to ask about things you don’t understand. Be confident to ask about the choices available to you, and seek a second opinion to gain more information before making any decision.
So, when you’re ready, here’s a guide to what you can expect to happen next.
If you are diagnosed with bowel cancer, you will firstly need to have tests to determine the size of the cancer tumour, its position and whether it has spread. This process is known as ‘staging’.
Your doctor needs to know the extent (stage) of the disease to plan the best treatment. The stage is based on whether the tumour has invaded nearby tissues, whether the cancer has spread and, if so, to what parts of the body.
Your doctors may order some of the following tests:
- Blood tests: Your doctor checks for carcinoembryonic antigen (CEA) and other substances in the blood. Some people who have bowel cancer or other conditions have a high CEA level. You may also have blood test that measures chemicals that are normally found in your liver, known as a Liver Function Test. An abnormal result can be a sign the cancer has spread to the liver.
- Colonoscopy: If colonoscopy was not performed for diagnosis, your doctor checks for abnormal areas along the entire length of the colon and rectum with a colonoscope.
- Endorectal ultrasound: An ultrasound probe is inserted into your rectum. The probe sends out sound waves that people cannot hear. The waves bounce off your rectum and nearby tissues, and a computer uses the echoes to create a picture. The picture may show how deep a rectal tumour has grown or whether the cancer has spread to lymph nodes or other nearby tissues.
- Chest x-ray: X-rays of your chest may show whether cancer has spread to your lungs.
- CT scan: An x-ray machine linked to a computer takes a series of detailed pictures of areas inside your body. You may receive an injection of dye. A CT scan may show whether cancer has spread to the liver, lungs, or other organs.
Your doctor may also use other tests (such as MRI) to see whether the cancer has spread. Sometimes staging is not complete until after surgery to remove the tumour.
In Australia, the staging system for bowel cancer is the Australian Clinico-Pathological Staging (ACPS) system.
As bowel cancer progresses from Stage AO to Stage D, the cancer cells grow through the layers of the colon wall and spread to lymph nodes and other organs. Images courtesy of the National Cancer Institute.
Stage A0 (Carcinoma in Situ)
In stage A0, the cancer is found only in the innermost lining of the bowel. Stage A0 cancer is also called carcinoma in situ.
In stage A, the cancer has spread beyond the innermost tissue layer of the bowel but is confined to the inside of the bowel wall.
In stage B, the cancer has spread to the outer surface of the bowel wall.
In stage C, the cancer is found in the lymph nodes in the area of the bowel.
Stage D (also known as metastatic bowel cancer)
In stage D, the cancer has spread from where it started in the colon or rectum, to other organs, especially the liver or lungs.
This is cancer that has been treated and has returned after a period of time. The disease may return in the colon or rectum, or in another part of the body.
You may also hear about the Dukes’ system, which is like the ACPS. Dukes Stage A equals ACPS Stage A, and so on.
Another staging system being used more often is called the TNM system. TNM is a more detailed type of staging classification, describing:
- the degree of Tumour invasion (T1 to T4)
- Node involvement - from NO which is that no lymph nodes are affected, to N2 where there are 4 or more lymph nodes affected.
- Whether distant Metastases are present or not (also called secondaries). MO means cancer has not spread. M1 means that it has.
Ask your doctor to explain the stage of your cancer in a way you can understand. This will help you to choose the best treatment for your situation.
During your journey, you may wish to find out more about the types of pathology tests being performed. You can find out about a range of tests at www.labtestsonline.org.au which can help explain what is being tested and why.
Having the right information and an understanding of what is happening can help you play an active part in your health care, and help you better understand your treatment and medication.
The website is commercially independent and has been developed by the Australasian Association of Clinical Biochemists with support from the Royal College of Pathologists of Australasia and has received development funding from the Australian Government.
Please note: the information contained on www.labtestsonline.org.au is not to be regarded as a substitute for medical advice from your GP or specialist.
'Relative survival' estimates are considered when examining survival from cancer. These estimates are derived by comparing the survival of people diagnosed with cancer (observed survival) with that expected by people in the general population of equivalent age, sex and calendar year (expected survival). The ratio of observed to expected survival is used as an indicator of the proportion of people who survived their cancer.
For example, 5-year relative survival of 60% for people diagnosed with a particular type of cancer means that these people had a six in ten chance of surviving 5 years after diagnosis relative to comparable people in the general population. It does not reflect an individual's chance of surviving cancer. How long an individual will live after a diagnosis of cancer is affected by a range of factors, such as the specific characteristics of the individual, the cancer they have and the treatments received.
The 5-year relative survival for bowel cancer increased from 48% to 66% between 1982-1987 and 2006-2010.
South Australian data (Epidemiology of cancer in South Australia. Incidence, mortality and survival 1977 to 1996) has shown that 5-year survival varies with the Australian clinicopathological stage (ACPS): 88% for Stage A (confined to the bowel wall); 70% for Stage B (confined to the bowel wall), 43% for stage C (regional nodal involvement), and 7% for stage D (distant metastases).
A 2004 American study has shown that the 5-year survival rate is around 93% for people diagnosed with Stage A bowel cancer; 82% for people diagnosed with Stage B bowel cancer; 59% for people diagnosed with Stage C bowel cancer; and 8% for people diagnosed with Stage D or metastatic bowel cancer.
Similar rates have been shown in Australia (Morris, Lacopetta and Platell 2007) as illustrated on the chart below.