Advanced cancer

Sunday 1 December, 2013

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On this page:  What happens now?Who else can I talk to?What treatments are available to me?Who is in charge of my treatment?How will advanced cancer affect my day-to-day life | What is palliative care?| | Am I going to die? | What hope is there? | Agnes' Story

There are many types of cancer and each type develops differently. Some grow slowly, some advance rapidly, and others are unpredictable in their behaviour. Some types respond well to treatment, while other types are more difficult to treat successfully. Advanced cancer is a term commonly used to describe primary cancer that is unlikely to be cured or secondary (metastatic) cancer that is unlikely to be cured.

Primary cancer refers to the first mass of cancer cells (tumour) that have divided and multiplied uncontrolled in an organ or tissue. The tumour is limited to its original site, such as the bowel. This is known as a cancer in-situ, carcinoma in-situ or localised cancer.

How cancer starts

Secondary cancer is when malignant tumour cells from the primary cancer site grow and form another malignant tumour at a new site, by moving through the blood or lymphatic system. The abnormal cells divide and multiply and form other masses of abnormal cells (metastases). This is also called metastatic cancer. Secondary cancer can occur if primary cancer is not treated or cannot be treated. Sometimes cancer moves before tests and scans find it.

Advanced cancer usually cannot be cured. However, it can often be treated to slow the growth and ongoing spread of the cancer, sometimes for months or years. Treatment can also help reduce symptoms, such as pain.

Secondary cancer (metastasis) 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 though the person may be experiencing symptoms caused by cancer in the liver.

How cancer spreads

What happens now?

You will need time to deal with the news that the cancer is advanced and to think about things like treatment and practical issues. You may feel overwhelmed at first. It’s common to feel as if you’re on an emotional roller-coaster. It can help to talk about your emotions and have strategies to cope with them.

Partners, family members and friends can be good sources of support. For ideas on how to cope with your feelings and communicate with those close to you, see the emotional impact section.

Who else can I talk to?

Some people prefer to discuss their feelings with somebody more neutral or professional. If you want to talk about what will happen in the future, know more about advanced cancer and how it might affect you, or get help with practical problems, start by talking with your general practitioner (GP).

If you don’t have a GP you feel you can talk to, you might like to talk with other members of your treatment team. This may include a hospital counsellor, social worker or psychologist.

Support from others going through a similar experience may also be helpful. You could join a face-to-face or telephone support group or an online forum. You may also find talking to a religious or pastoral care worker beneficial. They may be able to offer you comfort and suggest strategies for your practical and emotional concerns.

What treatments are available to me?

The type of treatment you have will depend on where the cancer started, how much it has spread and your general health and preferences. The most commonly offered treatments include chemotherapy, radiotherapy, surgery, biological therapy and hormone therapy, or a combination of these treatments.

You can discuss your treatment options with your doctor, as treatment is personalised and important, no matter what stage the cancer is at. Some people may decide that they don’t want to have any further active cancer treatment; others feel that palliative care or pain management or rehabilitation would be beneficial. See the treatment for advanced cancer section for more information.

Who is in charge of 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 GP, the palliative care doctor, the oncologist, a care coordinator or another member of the treatment team whom you trust and get on well with.

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 leave work altogether. Your partner or a family member might need to stop work to help care for you.

Treatment or other services can be expensive and may affect your finances and cause concern. This can make it harder to cope with other worries or fears you may have, such as negotiating leave from work or getting financial assistance.

You may experience various symptoms due to the cancer or treatment, such as nausea, fatigue or breathlessness. These may impact on what you can comfortably do for now and your sense of independence. See the managing symptoms section for more information.

"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."

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 you have to travel to get to the hospital, 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 (and sometimes anger levels). And all the other possible changes to work, care, finances, symptoms may themselves result in emotional changes.

What is palliative care?

Palliative care is a combination of services to help improve your quality of life, within the limits of your illness. It can help you to cope with the symptoms of cancer and treatment, as well as the practical problems of daily life.

There is a wide range of services and, at some stage, you will probably use at least one of these. Even if you decide not to have further active treatment for the cancer, doctors and nurses who specialise in palliative care can help relieve or control your symptoms to help you maintain the best possible quality of life. Palliative care can also provide support for families and carers. For more information, see the pallative care section.

Am I going to die?

Death can be one of the first things some people think of when they learn they have advanced cancer. Other people’s first concern could be how they break the news to their family. This reaction can often be mixed with other feelings, such as fear at the thought of what lies ahead – perhaps pain, loss of control, loneliness and even relief for some.

If you would like to know the expected outcome (prognosis) of the cancer, you will need to talk to your doctor. How long you live for and the changes you may face in that time depend on how the type of cancer you have been diagnosed with behaves and responds to treatment.

For some people, improved treatments can keep the disease under control for months or years without curing it (like a chronic disease).

Palliative medicine can help manage pain or other symptoms associated with cancer and its spread. It can also reduce side effects from cancer treatments to make life more comfortable.

Not all people with advanced cancer die from it – other factors can intervene. Some people do unexpectedly go into remission, with signs and symptoms of cancer no longer present. For other people, different health issues become more serious than the cancer.

When faced with the possibility of dying, some people begin to live day by day. Others find that preparing more consciously for death, such as preparing a will or the funeral, helps them to feel more in control of their life.

If you have questions about dying, see Facing End of Life: A guide for people dying with cancer, their family and friends.

What hope is there?

If you have been told your cancer is unlikely to be cured, you can still feel hope.

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 an excursion 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. For other people, cancer can test their 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."

Agne's Story

"It was 1984 when I made an appointment with my GP – I had the flu so it was a routine check-up. However, during the examination he found a lump in my breast. He was concerned because it was a large lump, so I was rushed to tests and scans. When I was diagnosed with breast cancer, it was a big blow.

"The doctors advised I have a double mastectomy, but I chose not to go through with the operation. However, I was given chemotherapy and radiotherapy.

"It was a very difficult period of time for me. My husband and I had two young children, aged 5 and 10, and our marriage ended shortly thereafter.

"My family was also spread over Australia and New Zealand. Mum came over to look after my children, but she died just after I started chemotherapy. This was a very sad time for me. I stopped treatment to organise her funeral.

"After this, I felt like I didn’t have anybody. It was a struggle to support my children. I had to work three jobs to get by. I was also struggling with the side effects from treatment, such as headaches, memory loss, fainting and diarrhoea.

"I finished active treatment but was taking tamoxifen continuously for many years. However, over time, the cancer came back into my lungs, liver and bones.

"It was over 20 years ago 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.

"Around this time, 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, 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 knowlege 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."

Click here to tell your cancer story.

Reviewed by: Dr Kathy Pope, Radiation Oncologist, Peter MacCallum Cancer Centre, VIC; Jessica Abbott, Cancer Care Dietitian, Alexandra Hospital, QLD; Frances Bellemore, Clinical Care Nurse, St Vincent’s Hospital, NSW; Gabrielle Gawne-Kelnar, Telephone Support Group Facilitator, Cancer Council NSW; Helpline and Cancer Counselling Service staff, Cancer Council QLD; Di Richardson, Consumer; Dr Mary Brooksbank, Philip Plummer and Claire Maskell Gibson on behalf of Palliative Care Australia.
Updated: 01 Dec, 2013