| Advanced cancer | First reactions | The emotional impact |
| Treatment | Common symptoms | Complementary therapies |
| Unproven remedies | Death and dying | Services & information |
Can advanced cancer ever be cured?
Making decisions about treatment
Taking part in a clinical trial
Advanced cancer means a new phase of treatment. Just as with early cancer, it is important to find out what a suggested treatment means for you.
Some people with advanced cancer thoroughly research proposed treatments, question doctors and read everything available on the subject. The internet is used for this purpose by many families. It is a good idea to check with your doctor if you or your partner uncovers something that disturbs you. The Cancer Council Helpline will also be able to help.
‘I hang on to my favourite daydream in which I receive a call from the oncologist who apologises profusely for misdiagnosing my condition. In this dream she tells me that basically all I have is a form of internal dandruff.'
Although primary cancer can sometimes be cured, most advanced cancers can't. This doesn't mean you may as well give up.
‘At age 49, my stepfather Ian had an operation to remove a tumour from his bowel, and soon after was diagnosed with cancer of the liver. While the rest of us struggled to come to terms with this news, he was planning his future. These plans didn't merely stretch into the six months that the doctors had allotted for him.'
Treatment can keep some advanced cancers under control for months or years. In other cases, treatment can help to control symptoms, including pain.
Having advanced cancer means living with a lot of uncertainty-from the big questions, like how long you will live, to the smaller but very stressful questions, such as what the next test will show. You might find you feel contradictory things-you hope for a cure, but accept whatever the future brings.
‘I'm not worried about dying. I know that when the time comes, it will be my time, this body will be worn out ... I just bought a new car and my last car I drove for 16 years so I fully expect to get 16 years out of this one. I'm very confident of the future.'
Not all people with advanced cancer die of it-other factors can intervene. We have all heard of unlikely cures. As one woman with uterine cancer puts it, ‘It is no one's business to take away hope'.
It is frustrating to find that cancer limits your activities. Rehabilitation is a way of restoring your independence to the level you can manage.
‘I did a lot of surfing and hiking, and I am used to being very, very physical. It was a big loss. But I find that even now, when I take my walker outside and walk around the yard, I can feel the same physical challenge. The doctor is really amazed that I am able to keep up with my weight training.'
Returning to work is one form of rehabilitation. When you can't work any longer, or work full time, you need something to help you feel involved in life and connected with people. It may be learning to play the tin whistle, writing your family history or joining a support group. Your hospital should have an occupational therapist who can help you think through the possibilities.
Palliative care emphasises comfort, providing care and support, so that people can live full and comfortable lives even if their disease cannot be cured. Many people think that palliative care is just for the end of life, but it is appropriate at any stage of advanced cancer. Palliative care workers are skilled in helping with common physical discomforts, including pain and nausea, but also with other issues, such as the emotional and family problems, which are so common. The emphasis is on family care.
Palliative care services work with the local doctor and with doctors and nurses from the hospital or clinic - they do not take over all the care and treatment decisions. Palliative care involves coordinating the care given by doctors, specialists, nurses, volunteers, social workers and pastoral care workers.
Palliative care regards dying as a natural event and does not prolong treatment when there is no longer any benefit. It does not include the deliberate ending of life.
All Victorians have access to a palliative care service. Your local service can assist you on request. Palliative care can be provided in the home, a hospital or a hospice setting. After asking for help from or being referred to your local service by your doctor or nurse, a care worker will visit you and your family and together decide what help you need and want.
Palliative care can be based at home. Services often can include visits from a trained volunteer support worker. If you wish, the palliative care service can be responsible for coordinating all your needs, including medical, practical, social, emotional and spiritual needs.
In general, palliative care services are free. There may be a charge for hire of some equipment for home care.
A hospice or palliative care unit is a place that provides day care and longer-term residential palliative care services. It is a place that has hospital facilities but a home-like atmosphere, where specially-trained staff care for people with life-threatening illnesses. A person may go into a hospice to have pain or other worrying symptoms brought under control, to give the person caring for them a break, or to spend their last days or weeks in a suitable environment. Many people go into a hospice for a short time and then return to their home. On average, most people would return to their home after a week or so, or until symptoms are well managed and your family or carers feel confident toresume your care.
Sometimes you will ask yourself if the treatment is worth it.
‘She hadn't any further wish to be jabbed and scanned or struggle to keep appointments. She simply preferred to enjoy her time with me and inspired her visitors with her carefree determination and religious belief.'
What does quality of life mean to you? Perhaps you would choose chemotherapy if it meant you could have two good weeks in each month. Or you might value keeping mobile, being able to spend as much time as possible with family and friends, without the disruption of treatment.
‘If I were told I had six months, but with a certain treatment I could extend it to one year, first off I would say, "What kind of side effects?" If they say my quality of life would be compromised greatly, I would say, "Forget it." I have had enough side effects to last me two lifetimes, I wouldn't want any more. Now that doesn't mean I would be giving up, far from it. I would be fighting with every ounce of life left in my body.'
In the same way that treatment can prolong life, medical intervention can delay death. There can be choices and decisions to be made about continuing treatment. It is difficult to know what you may want ahead of time. Some people have strong wishes and may want to know that these will be respected.
You may also appoint an enduring power of attorney (medical treatment): someone who you trust to make medical decisions for you should you become unable to make competent medical decisions because of illness. You can get information about this from the Office of the Public Advocate, Victoria Legal Aid, your solicitor or a social worker..
Under Victorian law, you can refuse medical treatment if you wish. Palliative care, including pain relief and the reasonable provision of food and drink will always be available to you.
For your refusal to be valid, you must fully understand the nature of the treatment proposed and the consequences of not having the treatment. You can refuse each treatment separately: you do not have to accept treatment on an all-or-nothing basis. You can complete a refusal of medical treatment certificate, outlining your wishes, which your treating doctors must comply with.
You may think about voluntary euthanasia (choosing to die rather than suffer the possible effects of treatment or disease). No one wants to suffer or to be a burden to others. If an illness is prolonged or is very debilitating, voluntary euthanasia can become an important issue for some people.
Sometimes people feel that life is not worth living because of poor control of pain or other symptoms, and some people become depressed because of their illness. Pain and depression can almost always be treated, and help is generally available for other symptoms. It is most important that you talk to your doctor or nurse about any physical or emotional symptoms that are causing you pain or grief, and find out what treatment is available.
A person with cancer may decide that they want their death hastened, but later decide that they don't. At this stage of life, as at other times, pains, fears and concerns can pass, and more accepting or positive feelings take their place.
Voluntary euthanasia is illegal in every state in Australia. Nevertheless, it is something that many people consider when they are seriously ill. Discuss your feelings with your doctor, family, friends, a counsellor or social worker.
The following explains the treatments which can alleviate the symptoms of advanced cancer or keep it in check.
Chemotherapy is the most widely-used treatment when cancer has spread. It is the use of particular drugs to kill cancer cells or slow their growth.
Chemotherapy is usually given over a few days, followed by a rest period of two to three weeks. Several courses of treatment are usually given. You should discuss with your doctor which combination of drugs you are having and how long your treatment will last.
Chemotherapy is usually given by injecting the drugs into a vein. This is called intravenous treatment. Other drugs may be given to you as tablets.
Chemotherapy can have side effects, including nausea, vomiting, depression, feeling off-colour, tiredness and loss of hair from your body and head. These side effects are temporary and steps can be taken to prevent or reduce them.
Surgery can remove affected organs and relieve discomfort caused by tumours which obstruct organs or cause bleeding. You might be offered surgery on certain organs that haven't been affected by tumours, for example, if they produce a hormone that encourages tumour growth.
Radiotherapy treats cancer by using x-rays to kill cancer cells, or injure them so that they cannot multiply. These x-rays can be precisely targeted onto cancer sites in your body. Treatment is carefully planned to do as little harm as possible to your normal body tissues. Radiotherapy can shrink tumours or stop them from spreading further. It can also relieve symptoms such as pain from secondary cancers in the bones. Since treatment can only be given at a specialised centre, you may have to arrange to stay away from home for this period. External beam radiation or internal radiation (brachytherapy) may be offered.
Radiotherapy can cause fatigue, skin problems, loss of appetite and other side effects. Some are temporary and others may be longer term.
Cancers that grow in response to hormones can often be slowed by taking drugs to suppress the body's production of the hormone. Other hormone treatments interfere with the effect of hormones on tumour cells.
If you have prostate, breast or uterine cancer, at some stage you will hear about hormone therapy. These are among the kinder cancer treatments that your body will experience. But they do have side effects.
For women, certain hormonal drugs will promote menopausal symptoms, whatever your age. A class of drugs called the aromatase inhibitors may be used if you are past the menopause and these can make you feel slow or sleepy. For men, hormone treatments can produce hot flushes.
‘What you can do, and I believe must do, is learn a lot about the specifics of the case at hand so that you are in a position to make the decisions that need to be made. Doctors may have more information, but they don't necessarily make better decisions.'
To cure a primary cancer, it can seem worth undergoing harsh or disfiguring treatments. But when you know cure is not possible, it can seem less reasonable to choose treatments that leave you feeling exhausted or sick.
Some people feel they want to fight on with whatever is available. They visit their oncologist with printouts from internet sites detailing the latest experimental treatments from overseas. Other people want to give it all they have got, but prefer to pick and choose among treatments. Perhaps you are not clear about what is best for you, and you want your doctor to advise and help you to decide.
Rarely do decisions have to be made on the spot. Talk it over and take your time.
It can be hard to talk openly with the different doctors you see. You might be concerned about taking up too much time, or your doctor might give the impression of being rushed. But it is essential that you have good, clear, open communication with the doctor treating you. It usually takes time for information to sink in and even more time to think over choices being offered.
‘My advice to everybody I have known in a similar situation is to question, question, question and to have the courage to change doctors until the responses begin to feel right.'
One vital point to talk over with your doctor is how, and in what situations, you should contact him or her. When an unexpected problem arises, it can add to your stress to be confused about who you should telephone, and how to do this.
In fact, you should be clear at all times about who's coordinating your care. As you go from one type of doctor to another, you might wonder who is responsible for what. It saves time and trouble when there's one person who keeps track of your situation. This may be your general practitioner, the palliative care doctor, the oncologist or any other member of your treatment team that you feel you trust and get on well with.
If you feel that your doctor is difficult to talk to, even after several visits, it is important to tell him or her. Most doctors want to be able to communicate well with their patients: it helps them, too. However, it can take time to get a good working relationship going. You can help, for example, by preparing a list of the questions you want to ask before your appointments.
‘After Colleen had been through five different treatment regimes at three different hospitals, we were referred back to the original oncologist. We knew him now, and felt that he knew us too. What a difference it made. He said more; we said more. He communicated with more feeling, and we felt more like we had a caring friend rather than an unknown, detached medico.'
All patients have the right to seek a second opinion from another doctor. Your specialist or general practitioner can refer you to another specialist and you can ask for a medical history to be sent to the second-opinion doctor. Ask for your x-rays and scans and take them to new appointments.
Your doctor may suggest that you consider taking part in a clinical trial.
Clinical trials are a vital part of the search to find better treatments for cancer. Doctors conduct clinical trials to test new or modified treatments and see if they are better than existing treatments. Your doctor will only discuss a clinical trial with you if the treatments are considered to be as good as or better than the standard treatments available.
Many people all over the world have taken part in clinical trials that have resulted in improvements to cancer treatment. However, the decision to take part in a clinical trial is always yours.
If your doctor asks you to take part in a clinical trial, make sure that you fully understand the reasons for the trial and what it means for you. Before deciding whether or not to join the trial, you may wish to ask your doctor:
If you decide to join a randomised clinical trial, you will be given either the best existing treatment or a promising new treatment. You will be chosen at random to receive one treatment or the other, but it will always be at least the best treatment available.
If you do join a clinical trial, you have the right to withdraw at any time. Doing so will not jeopardise your treatment.
It is always your decision to take part in a clinical trial. If you do not want to take part, your doctor will discuss the best current treatment choices with you. Further information is available from Clinical Trials.
A hugely popular relay-style event that raises money for cancer research.
