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• Cancer that has advanced

• First reactions

• The emotional impact

• Common symptoms

• Complementary therapies

• Unproven remedies

• Death and dying

• Services and information

      ( www.cancervic.org.au ) - Copy with permission 2005

Treatment

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 Information and Support Service will also be able to help.

Can advanced cancer ever be cured?

Although primary cancer can sometimes be cured, most advanced cancers can’t. This doesn’t mean you may as well give up.

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.

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’.

Rehabilitation

It is frustrating to find that cancer limits your activities. Rehabilitation is a way of restoring your independence to the level you can manage.

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

Palliative care is coordinated care by specialist doctors, nurses, volunteers, social workers and pastoral care workers. The goal of palliative care is to provide care and support so that people with serious illness can live as fully and comfortably as possible.

Palliative care:

• combines medical, nursing, psychological, social and spiritual care so that people with cancer may come to terms with what is happening to them

• provides relief from pain and other distressing symptoms

• regards dying as a natural event and does not prolong treatment when it is no longer beneficial

• does not include deliberate ending of life

• offers support for families and friends during a person’s illness and in bereavement

• can be provided in the home, a hospital or a hospice setting.

If you are not linked in with a palliative care service and would like to be, speak to the doctor or nurse. In Victoria, each palliative care organisation covers a particular geographic area, so you will be visited by the organisation that serves your area. All care may be provided by different people from one service, or by district nurses in conjunction with a palliative care service.

With the palliative care nurse, you will choose which palliative care workers will be involved and how often they will visit. This will vary according to how you feel, what problems you have and how your carers are managing.

Palliative care services work with the local doctor and doctors and nurses from the hospital or clinic—they do not take over all the care and treatment decisions. Palliative care 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 is a place that provides day care and longer-term residential palliative care services. It is a place that has hospital facilities but a homelike 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.

When treatment seems too much

Sometimes you will ask yourself if the treatment is worth it.

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.

Medical intervention

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 Law Institute of Victoria, your solicitor, social worker or the Office of the Public Advocate.

Refusal of medical treatment

Under Victorian law, you can refuse medical treatment if you wish, except for palliative care, including pain relief and the reasonable provision of food and drink. 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.

If you have appointed someone to act as your enduring power of attorney (medical treatment), he or she can refuse medical treatment on your behalf.

Voluntary euthanasia

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.

A person with cancer may decide that they want their death hastened, but later decide that they don’t: they felt that way because they were feeling particularly ill, scared or worried about the strain they were putting on others.

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.

Treatment for advanced cancer

The following explains the treatments which can alleviate the symptoms of advanced cancer or keep it in check.

Chemotherapy

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

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

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.

Hormone therapy

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.

Making decisions about treatment

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.

Talking to your doctor

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.

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.

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.

Taking part in a clinical trial

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.