Advanced cancer

Thursday 1 December, 2016

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On this page: What is advanced cancer? | What happens now? | What treatments are available?Who will coordinate my treatment?How will advanced cancer affect my day-to-day life?Will palliative care help?| | How long have I got? | How do I find hope? | Agnes's story

What is advanced cancer?

Cancer is a disease of the cells, which are the body’s basic building blocks. It occurs when abnormal cells divide and multiply in an uncontrolled way. There are many types of cancer and each type develops differently. Some grow slowly, some advance rapidly, and others behave unpredictably. Some types of cancer respond well to treatment, while other types are more difficult to treat.

Advanced cancer is a term used to describe cancer that is unlikely to be cured. It may be primary or secondary cancer.

Primary cancer refers to the first mass of cancer cells (tumour) in an organ or tissue. The tumour is confined to its original site, such as the bowel. This is called cancer in situ, carcinoma in situ or localised cancer.

How cancer starts

If cancer cells from the primary site move through the body’s bloodstream or lymph vessels to a new site, they can multiply and form other malignant tumours (metastases). This is known as secondary or metastatic cancer. Secondary cancer keeps the name of the original, primary cancer. For example, bowel cancer that has spread to the liver is still called metastatic bowel cancer, even when the person has symptoms caused by cancer in the liver.

Although medical treatments may not be able to cure advanced cancer, some treatments may still be able to slow its growth or spread, sometimes for months or even years. Palliative care can also help manage cancer symptoms, which may include pain, and can reduce side effects from cancer treatments. At any stage of advanced cancer, a range of other palliative care services can enhance quality of life.

How cancer spreads

What happens now?

Some people’s cancer may be advanced when they are first diagnosed. For others, the cancer may spread or come back (recur) after initial treatment.

Advanced cancer usually can’t be cured, but it can often be controlled. For some people, improved treatments can help manage the cancer and relieve side effects, allowing people to live for a long time – sometimes for years – with a good quality of life. In this case, the cancer may be considered a chronic (long-lasting) disease.

What treatments are available?

This will depend on the aim of treatment – whether it’s to try to cure the cancer, keep the cancer from spreading, or to control symptoms. Treatment will depend on where the cancer started, how far it has spread, your general health and preferences. The most common treatments include chemotherapy, radiotherapy, surgery, targeted therapy, hormone therapy, immunotherapy, or a combination of these. Sometimes, treatment is available through clinical trials.

Treatments can be used for different reasons, so talk to your doctor about the aim of each treatment. As the cancer progresses, the aim may change from trying to cure the cancer, to controlling the cancer, to relieving symptoms and improving quality of life. For further details, see treatment for advanced cancer.

Who will coordinate my treatment?

If you have many health professionals caring for you (also referred to as a multidisciplinary team), it can help to know who is coordinating your care. This may be your general practitioner (GP), your palliative care team, the oncologist, a care coordinator, or another member of the treatment team.

How will advanced cancer affect my day-to-day life?

Cancer affects people’s lives in different ways. You may be able to continue your usual routines for some time. If you work, you may need to take time off or stop work altogether.

Treatment or other services can be expensive and may affect your finances. This can add to concerns you may have, such as negotiating leave from work or getting financial assistance.

The cancer or treatment may cause various symptoms, such as nausea, fatigue or breathlessness. These may impact on what you can comfortably do and on your sense of independence. See managing symptoms.

There can be practical issues you may have to think about to make life more comfortable, such as medical equipment, alterations to your home, or home help. If the hospital is a long distance from your home, you may require transport or accommodation, especially if there are times when you are in and out of hospital.

You may also experience emotional changes from the cancer and its treatment – for example, some hormonal treatments affect people’s emotions. Changes to your work, finances and health may also result in mood changes.

"There is still a life to be lived and pleasures to be found and disappointments to be had. Living with advanced cancer is a different life, not just a journey towards death." – Julie

Will palliative care help?

Palliative care is an approach that allows people with advanced cancer to maintain their quality of life in a way that is meaningful to them. It treats physical, practical, emotional or spiritual symptoms. Palliative care involves a range of services offered by medical, nursing and allied health professionals, as well as volunteers and carers.

While some people delay or feel anxious about accessing palliative care because they believe it’s only offered to people close to death, this type of care can improve quality of life from the time of diagnosis. It can be used for only a few weeks or months, but the number of people receiving palliative care for several years is increasing. Palliative care can also provide support for families and carers.

How long have I got?

After a diagnosis of advanced cancer, some people want to know how long they have left to live, while others prefer not to know. It’s a very personal decision.

If you would like to know the expected outcome (prognosis) of the cancer, you will need to talk to your doctor. This is a difficult question for doctors to answer and you may find their response is vague. They may give you an estimate based on what usually happens to people in your situation, but can’t say exactly what will happen to you. The actual time could be longer or shorter.

Not all people with advanced cancer die from it – for some people, improved treatments can keep the disease under control for months or years. For other people, different health issues become more serious than the cancer.

When faced with the possibility of dying, some people think about what they’d like to achieve in the time they have left. They may begin to live day by day, or take control of their life by completing practical tasks, such as preparing a will or the funeral. For further details, see planning ahead.

If you have questions about dying, see Facing End of Life o call Cancer Council 13 11 20.

How do I find hope?

If you have been told you have advanced cancer and it is unlikely to be cured, you may find it hard to feel hopeful.

What you hope for may change with time. Sometimes, you may hope for good days with understanding company or the love of family and friends. You may find yourself hoping you will maintain your sense of independence or stay pain-free. Some people explore activities they’ve never tried before and find hope in this new aspect of their lives. Others find hope in small projects, such as completing a scrapbook of their life or planning a trip with their family.

While the cancer and its treatment can limit your activities, some people discover new strengths in themselves, and this gives them hope.

For some people, faith or spiritual beliefs can help them get through tough times. People who find hope in these beliefs describe feelings of optimism that are hard to explain to others. Cancer can also test people’s beliefs. Either way, you may find it helpful to talk to your spiritual or religious adviser, if you have one.

"If I think of myself as a person who is dying of cancer, then what lies ahead is a hopeless end. If I think of myself as a person who is living with cancer, then my daily life is an endless hope." – Roberta

Agnes’s story

"It was over 20 years ago after my first diagnosis, when the doctors discovered active cancer cells throughout my body, including my lymph nodes and lungs. I had an operation to try to remove cancer from my lungs, but it was too advanced and they couldn’t get it all.

"The doctors told me that the cancer was terminal and I had six months left to live. But that was more than 10 years ago, and I’m still here. I feel like I have had cancer for a lifetime: 29 years.

"I only found out about palliative care a few years ago. For me, this made such a positive difference – I now have equipment such as a walking frame, wheelchair, shower seat and toilet seat.

"My palliative care nurses visit me at home twice a week and also call a lot to check on me.

"I have been in hospital many times, but I have been able to stay at home as much as my health has allowed. Being near my family is the most important thing to me.

"The love I have for my children, and the desire to see them grow up, marry and have kids of their own, has kept me going. I credit them as the reason I’ve lived with advanced cancer for so long.

"My advice for someone with advanced cancer is to be strong. Don’t be afraid – what will be, will be. Have friends and family around to help provide the support you need. Get all the help you can from government and palliative care services.

"You need the will, guts and knowledge to make the most of your time. To me, advanced cancer is just a sickness. I don’t feel that I’m going to die today. I just take each day as it is, and try to maintain a strong will to live."

Tell your cancer story.

Reviewed by: Dr Maria Ftanou, Lead Clinical Psychologist, Peter MacCallum Cancer Centre and Research Fellow, Melbourne School of Population and Global Health, University of Melbourne, VIC; Dr Kathryn Dwan, Senior Policy Officer, Palliative Care Australia; Alison Hocking, President-Elect, Oncology Social Work Australia, VIC; Philippa Kirkpatrick, National Policy Manager, Palliative Care Australia; Prof Liz Lobb, Professor of Palliative Care (Allied Health), Calvary Health Care, Kogarah, NSW; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Hamish Park, Consumer.

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