Getting the news A cancer diagnosis can make you feel like you’re out of control. But there's nothing about your cancer that you can’t understand if it’s explained to you. Just ask.
First suspicions Perhaps you were feeling tired or breathless. Maybe losing weight with no explanation. Or you found a lump or had pain where you’ve never felt pain before. Or maybe you just felt that things weren’t looking or functioning how they usually did. These are the sorts of things that may have brought you to your local doctor (GP) for a check-up. If your doctor has reason to believe that cancer is the cause of your symptoms, he or she will either organise some simple diagnostic tests or refer you directly to a surgeon or an oncologist for tests. Those early tests will determine if you have a cancerous growth. If you do, there will be other tests to get more detailed information about the cancer cells in your body.
"You have cancer" Often the first reaction to a cancer diagnosis is shock. It can take some time before that stunned feeling gives way to more specific emotions like fear, anger and grief. It’s very common to leave your doctor’s surgery without having asked any of the questions that you feel you should have asked. Don’t worry. Once you’ve calmed down, make a list of the questions you have and take it to your next appointment. If you want some information straight away, call the Cancer Council Helpline on 13 11 20.
Learn how to ask questions You have every right to ask your care team questions and talk through different options and ideas.
Make time If you have some things you want to discuss, ask for a longer time slot when you call to make your appointment.
Write a list Put your questions down on paper before your appointment and take them along with you so you don’t forget them.
Ask twice If you don’t understand the answer you’re given, say so and ask for it to be explained to you again.
Take a friend This is an emotional situation for you. Sometimes the answers you hear will upset you. When you’re feeling upset, it can be hard to concentrate on details and remember things clearly. Bring a friend or family member with you so that you have back-up. If no-one’s available to come with you, take a notebook and write down the answers as they’re given to you.
Get an interpreter If English is your second language, you may struggle to understand some of the details being discussed. Interpreting services are available. When you make your appointment, see if it’s possible for an interpreter to be present. If not, you can get help from the Australian government’s interpreting service; for details see “More help” at the bottom of this page.
Get a treatment plan Ask your care team to provide a written summary of your treatment plan so you have no uncertainty about what is happening.
Be a team player Your care team is trying to do their best for you. They won’t be annoyed at you asking them questions. In fact, the more you know about your treatment the more you can help it be a success.
Testing Early tests might have confirmed the presence of cancer, but to make your treatment as effective as possible, your care team will ask you to take further tests so they understand more about what’s going on inside you.
Scans There are many different types of scans, but they’re all used to get a better picture of the cancer. A CT scan is an x-ray taken from many different angles to produce a three-dimensional image. An MRI scan also builds up a three-dimensional image but uses magnetic resonance instead of x-rays to do it. If you’re having a PET scan you’ll be injected with a small amount of a radioactive substance. The scan tracks the substance as it moves through your body; cancerous cells show up as hot spots.
Biopsies A biopsy involves taking a small sample of tissue and having it analysed by a pathologist. Sometimes the sample can be collected using a needle, sometimes surgery is necessary. Depending on where the tissue is being taken from, you may need to have an anaesthetic before the procedure, or take a course of antibiotics afterwards to avoid an infection. A pathologist analyses the sample to find out more about the cancer.
Blood tests Your blood can tell specialists a lot about the cancer cells in your body. Certain tests are used to look for certain things. For example, the CEA test looks for carcinoembryonic antigen which can be an indication of stomach cancer. The PSA test looks for prostate specific antigen which is related to prostate cancer.
DRE A digital rectal examination (DRE) is used to look for swelling, lumps or hardening in the prostate gland. It involves a doctor inserting a gloved finger in the anus to access the lower part of the prostate.
Ultrasounds An ultrasound uses sound waves to build up an image of internal parts of your body.
X-rays When you have an x-ray, a machine directs a small amount of radiation at your body to produce a two-dimensional image. These pictures are used to identify possible cancerous growths in your organs or bones. A mammogram is a low-dose x-ray that is used to identify abnormalities in breast tissue.
Barium x-rays For these you’ll have to swallow a quantity of liquid barium. The barium shows up in the x-ray, revealing any abnormalities.
Endoscopies An endoscope is a long, thin, flexible tube with a video camera at its tip. During an endoscopy, the endoscope is passed into your body so that your specialist can see and assess any growths. Sometimes the specialist will collect a tissue sample during the endoscopy, or the growth can even be removed. Endoscopies can also be known by more specific names: A bronchosopy enters through the windpipe to look at the lung. A colonoscopy goes in through the anus to examine the colon. A duodenoscopy goes in through the stomach to look at the bile duct or the pancreas. A gastroscopy goes down through the oesophagus to look into the stomach. A hysteroscopy enters through the cervix to examine the uterus. A cystoscopy or ureteroscopy enters through the urethra to inspect the bladder.
What stage you're at Cancer specialists use the term ‘stage’ to describe the size and scope of a cancer. Usually cancers are said to range from a stage 1 (meaning a small, non-invasive cancer) to a stage 4 (meaning one that is large and has spread to other parts of the body). If your care team is using those terms, ask them exactly what they mean by it.
Getting a second opinion You have the right to ask for a second opinion at any step along the way, from the diagnosis of your cancer, through testing to treatment and beyond. You can ask your local GP to refer you to a different specialist. Or you can ask the specialist who you’re currently seeing to refer you to someone else. You will need to ask for your medical history and any associated scans and x-rays to be passed on to the new specialist.
Words to know GP the abbreviation for general practitioner, referring to a local family doctor
Oncologist a doctor who specialises in cancer
Oncology the branch of medicine concerned with cancer
Expert's insight: Raj Gogia Raj Gogia is a Hobart urologist who practises general urology, but much of his work is involved with prostate cancer. When people with cancer are waiting on results, Raj tries to minimise the worry as much as possible.
“Human nature being human nature, people automatically think the worst when they’ve been given a cancer diagnosis. Unfortunately, it’s the way most of us are built. Everyone worries but worry can be alleviated and reduced if you get the correct information in a timely manner. That information may not be good news, but often some news is better than none. It’s the uncertainty that often causes the anxiety.
“The most important thing is to educate yourself about the condition itself. Get as much information as you can from all your doctors, including your GP and specialist. Once you have got that information on board and you know what the future holds, you can plan more effectively.
“The most stressful period for people with cancer is that time in the treatment when you have no available evidence that you’re getting better. Of course, a result will come to hand later, but that’s no consolation at the time.
“It’s important to keep in regular contact with your GP and your specialist. Develop a plan with regards to when your follow-up scans and blood tests will be due. Formulating a clear plan will give you direction and certainty as you’re waiting for your results.
“Support groups are also a very important part of dealing with cancer at all stages. They will help you at the time of diagnosis, when you’re going through treatment, when you’re recovering after treatment, and when you are cleared. You’ll find that discussing coping mechanisms with others who share your situation will be a source of strength at a time of uncertainty.”
Expert's insight: Annabel Pollard As head of the psycho-oncology unit at the Peter MacCallum Cancer Centre, clinical psychologist Annabel Pollard consults with people living with cancer every day.
“Receiving cancer news is like being parachuted into a country with no map. You’ve never done this before. At the point of diagnosis, evidence suggests that people only take in 20 to 30 per cent of the information, so don’t be surprised if you’re sitting there in a fog of confusion.
“The medical staff’s capacity to communicate is very important. If possible, you should have someone with you, particularly when you’re getting test results or treatment information.
“I don’t think there’s a right or wrong way to deal with getting the news. How you respond will depend on a whole range of factors: have you had a past experience of cancer or another serious illness? Do you have a mental health disorder that could make it harder to cope? How much social support do you have?
“Patients who jot down questions before a consultation have more receptive consultations. It’s more directed and targeted. Preparation will give you the right information.
“Be realistic and optimistic, rather than realistic and pessimistic, if that makes sense.
“You will be presented with an avalanche of information. It may take several weeks or months to cope, adjust and deal with it all.”
Questions to ask
What is my cancer called? Is it fast- or slow-growing? Ask your care team to write down the name of your cancer. Depending on what type of cancer you have, your care team can tell you if your cancer is slow-growing or if it’s spreading quickly. That information can help you make decisions about what treatment you want to follow.
What are my prospects? While some very serious cancers have survival rates of just 10 and 14 per cent, others can have survival rates of around 95 and 97 per cent. Your care team can help you to understand where you sit on that scale.
What tests am I going to have? The tests you need depend on the kind of cancer you have. Your care team will be able to explain what tests you’re having and why, as well as the benefits and risks of each one.
More Help TIS National 131 450 www.immi.gov.au Translating and Interpreting Service (TIS) National is an interpreting service run by the Department of Immigration and Citizenship. It is available seven days a week, 24 hours a day to any person in Australia that needs assistance. To book an on-site interpreter or phone interpreter go to the website and follow the links to Living in Australia > Help with English > Translating and Interpreting Service (TIS) National.
Health ombudsman If you’re unhappy with how you’ve been treated by a doctor, make a complaint to the clinic or hospital where it took place. If you’re not satisfied with the response, contact your local healthcare ombudsman at the agencies below.
ASHLEIGH MOORE After surviving a stage 4 head and neck cancer in 2005, Ashleigh Moore returned to hospital for a routine check-up in 2010, only to be diagnosed with lung cancer after being misdiagnosed originally.
Ashleigh is chair of Cancer Voices SA, an advocacy group that gives people with cancer and survivors of cancer a platform to discuss their needs and rights.
“I was diagnosed with head and neck cancer on the Monday, and went in for surgery on the Friday. It was that quick. The doctors didn’t tell me much, because they knew they’d be in the dark until they went in and had a look around.
“I had a high-pressure job, but I was perfectly healthy, a non-smoker and a light drinker with no family history of cancer. Cancer was a disease that other people got.
“With cancer you think straight away that it’s a death sentence, particularly cancer in the neck and head area. I was devastated, but I was lucky to have my wife supporting me*.
“When you become a full-time patient, you’re living in a world of uncertainty, so always question things, always be vigilant. If it looks incorrect, it probably is. Find information for yourself on the internet and get second opinions. I learned pretty quickly that you have to take control of the situation.
“Complementary therapies can be like flicking a switch for some people, while for others they do next to nothing. Although it wasn’t advised by medical staff, I tried massage, acupuncture and meditation. I also took nutritional supplements and exercised more.
“In September 2010, I was diagnosed with lung cancer after an unacceptable level of delay. When you tell people you have lung cancer, people automatically ask you how many you smoked a day. There’s a real stigma attached to it. The treatment is physically demanding, but my general level of fitness is helping me.”
* Justine Chilman-Moore, tells her own story in Taking care.
Photo by Bruce Daly
JANE BARRET An enthusiastic hiker, Jane Barrett was in New Zealand when she started getting concerned about her fitness. Each day the steep track seemed harder to climb.
A scan revealed a large lymph node in her neck, but despite having been a nurse, the thought of cancer never crossed her mind.
Later, after a needle biopsy, Jane was referred to a specialist for the test results. He diagnosed metastatic neck cancer from an unknown primary. Distraught at the lack of information or support for her type of cancer, Jane has become an advocate through Cancer Voices NSW.
“It was a baking hot day. I went into the surgery by myself. The specialist sat me down, examined me and asked a few questions. He didn’t have the biopsy results so he phoned up, turned around and said ‘You’ve got metastatic cancer, we don’t know where the primary is.’
“I’d never heard of that before – not knowing where the primary was. Then he started talking about the treatment and the side effects and that he’d see me for some tests. I paid the bill, walked out the door, into the sunshine. It was all done like a business transaction.
“I couldn’t think straight. I couldn’t find my car initially. I phoned my partner, who came home. We held each other, too stunned to speak.
“Having worked as a nurse in the past I’d seen dreadful operations where they’d taken half a person’s face and neck for some cancer operations. I thought, ‘I can’t live mutilated like that, I’d rather be dead.’ It felt like a nightmare.
“Thankfully, I sought a second opinion. There was something so different in this specialist’s approach, in his personality and the way he treated me. He had a much more moderate approach. I felt he had the skill and the strength to get me through. He made me feel that I could face treatment.
“With the first doctor I felt I was being treated just as ‘a case’ not as a person. I felt numbed and dehumanised by his approach. Any diagnosis should be given empathically, looking at the whole person and what they have to cope with once they walk out that door.”
