Coping with advanced cancer

Cancer that has advanced beyond early stages is described in many ways, including advanced, secondary, metastatic, and progressive cancer. This topic looks at the emotional and lifestyle impacts of advanced cancer, as well as some of the symptoms associated with this, and ways to deal with these.

First reactions

Being diagnosed with an advanced cancer is a very frightening experience. For some people, advanced cancer may be a slow progressing illness, for others it is more rapid.

Some people say the diagnosis of secondary cancer is more traumatic than when they were first diagnosed with cancer.

For people who did not even know they had primary cancer, a diagnosis of advanced cancer can be a huge shock. It is very common to experience a wide range of thoughts and feelings.

What do I do now?

Take time and allow the news to sink in.

Many people find that the more information they have, the more they can feel in control. Do not be afraid to ask questions. If you do not understand or remember the first time, it is fine to ask again.

Some patients and families find it very useful to have some ideas of time. It is very hard for your doctor to give you accurate information as every person’s illness is different. This time frame will be the doctor’s best guess based on their experience of other people with similar disease in similar circumstances.

Different ways of thinking

For some people, going on with life as they normally would is what they feel most comfortable doing.

For other people, it is thinking about what is most important for them, perhaps making a list and prioritising, and maybe following an interest they have always wanted to do. For some it will be spending time with family and friends.

For others it will be getting their affairs in order, eg. sorting out their photographs, making or updating their will, or planning their funeral. Other people will not want to do any of those things and prefer to live day to day.

Other people’s reactions

Some people worry that older people in the family or children will not cope with the news. It is usually best to tell your family/whanau and your closest friends about your cancer sooner rather than later. If you do not tell your family, they may sense that something is wrong.

Also see Parenting with advanced cancer

Partners

Your ‘partner’ refers here to your husband, wife, girlfriend, or boyfriend.  Often, you may find that your thoughts and feelings are not matching up with those of your partner. Sometimes it can be hard for your partner to help you to make decisions about treatment. Your partner may overwhelm you by trying to protect you.

It may be an opportunity to teach your partner new skills. Feeling frustrated about not being able to do what you used to, is almost universal among people as their cancer advances.

It helps to work out what you need from your partner when things are tough - and ask for it. Women often say their biggest single need is for a sympathetic listener; many male partners acknowledge their difficulty providing this.

If your partner struggles with this aspect, try to find someone else to provide this for you. If family and friends are not available there may be a counsellor, social worker, or support person available either through your hospital or local Cancer Society.

Changes in roles and routines

When someone is diagnosed with advanced cancer, routines and family roles change. The person who was the major source of income might now be unable to work and may be dependent on others.

A partner who was sharing chores may now have to take on extra tasks or get a job. Maintaining your usual social life, hobbies, and interests may be difficult or impossible for a while.

There are a number of ways that may help you manage:

• preparing simpler meals
• being more relaxed about housekeeping standards
• if you have children, asking them to help more around the house
• when neighbours, friends, or relatives ask what they can do to help, you could ask for a specific task to be done for your child; such as taking them to sports practice.

Sexuality and advanced cancer

It is very difficult to predict accurately how advanced cancer and its treatment will affect your sexual relationships. For most people there are changes which require them to adapt and develop new ways of giving and receiving sexual pleasure. Advanced cancer does not mean your sexuality will be destroyed.

However, many people with cancer say they feel washed out and almost completely without energy. This may be to do with the cancer itself, or sometimes the treatment. In this situation you might not want to bother to do anything at all about sex. Communication with your partner is essential. Also see Sex and cancer

If you live on your own

Being unwell can make you feel lonely and isolated even though you may strongly value your independence. If your energy is low it can be hard to manage the practical aspects of running a home, going to hospital appointments, and coping with treatment.

You may not be used to asking others for help. However, if people close to you – friends, neighbours, colleagues – offer to help, they will appreciate the opportunity to assist you. It is often easier to give them a specific task to do; such as shopping, cooking occasional meals, or mowing the lawn.

Knowing who to contact when you feel unwell is vital. A list of key phone numbers, eg. GP, district nurses, displayed by your phone is useful.

Worry, anxiety, and panic attacks

When you have been diagnosed with advanced cancer, it is natural to worry about what will happen.

Fear and anxiety may be present all of the time or may come and go. You may find that you cannot concentrate, are irritable and easily distracted, sleep badly, and get tired easily.

If you are very anxious, you may have a panic attack - you may feel very breathless, have a pounding heart, sweat, and shake. This can be very frightening, and some people worry they will die during a panic attack.

If you feel your anxiety or worry is getting worse and interfering with your life, you may need to get help from your GP, counsellor, or psychologist.

Depression

It is not unusual to have times when you feel very low after a diagnosis of advanced cancer. Some people find their sadness gives way to a situation where their mood is low most of the time, and they are depressed.

Depression can usually be successfully treated and the first step to feeling better is getting appropriate help.

Men are more likely to be aware of the physical symptoms - such as low energy, fatigue, physical aches and pains, loss of sexual interest, anxiety - rather than the emotional ones.

Women tend to be more aware of the emotional symptoms – such as having a very low mood most of the time, loss of interest in favourite activities, sleep problems, feeling helpless, being close to tears, poor concentration.

Talk to your doctor if you think you may be depressed.  Also see Depression - treatment

Support groups

Many people are greatly helped by joining a support group. If you find a group that is right for you, you may benefit from the close bonds with the other support group members.

People talk of the strength they have found in sharing feelings and facing reality. They also talk about the laughter that is a big part of any group. Groups are not for everyone, but are a support worth considering.

Taking care of yourself

This can be as simple as eating healthy food, exercising within your limits, and getting enough rest. It can also be doing the things you really enjoy, such as carrying on with your work if you are able, and helping others when you can.

Having fun is an important part of self-care. The value of humour as a therapy is increasingly recognised. Getting together with close friends to share memories and reminisce over photographs of good times together can be very enjoyable. Watching a comedy on TV or a funny DVD or reading an amusing book can be both a great diversion and good for your health.

You might find a new creative challenge – art, music, or writing. You may choose to write your life story, or record your values, hopes, beliefs, and wisdom as a legacy of your life.

Meditation and relaxation skills can help when you are feeling low or needing some quiet time. You may find gentle massage helps reduce stress and improves your wellbeing.

Dealing with symptoms

Some symptoms are a side effect of treatment while others are caused by the cancer itself.

Tiredness

For many people, extreme and constant tiredness (fatigue) can be a significant problem. Some people say tiredness is worse than pain or nausea.

Tiredness can be caused by a range of things:

• progression of the cancer
• treatments
• poor nutrition causing loss of weight and muscle tone
• anxiety
• inadequate sleep
• drugs, such as analgesics, antidepressants, and sedatives
• anaemia
• infection.

Unfortunately, treating tiredness successfully is not straightforward.

Ways to cope with tiredness

Good things to do when you experience tiredness are:

• Talk about the tiredness to your friends, relatives, and supporters: it helps them to understand how you feel.
• Plan to do things at the time of day when tiredness is least severe. Morning is best for many people.
• Plan your activities so that you conserve your energy for the things you really want or need to do.
• Take short naps during the day.
• Take gentle exercise, like walking to the letterbox or sitting out of bed for meals. This preserves muscle tone and a sense of normality.
• Have high-calorie, high-protein drinks. This may slow weight loss and help maintain muscle strength.

Tell your doctor or nurse if you become weaker or more fatigued. The cause may be something treatable, like anaemia.

Nausea (feeling sick)

There is a range of anti-sickness drugs that work in different ways. Let your doctor know if you feel sick, or if the drug is not working. Most anti-nausea drugs take about 20 to 30 minutes to work.

The following suggestions may be helpful:

• eat small meals at frequent intervals
• avoid fatty or fried foods
• rest before and after eating
• do not lie flat during or after eating
• drink plenty of fluids
• see a dietitian or nurse for dietary advice
• try relaxation exercises
• do something enjoyable as a distraction.

Pain

Not everyone with advanced cancer has pain. If you have pain, in most cases it can be controlled. Pain may come and go. It may be worse on some occasions or it may be always there.

People with advanced cancer do not necessarily have more severe pain as the cancer progresses.

Pain depends on the location of the cancer and its size. It may take a little time to find the most effective pain control for you.

Pain management is now recognised as a specialised field for doctors and nurses. Palliative care services specialise in pain management.

There are many ways to manage pain, including:

• pain-relieving drugs
• pain-relieving procedures, such as ‘nerve block’ and ‘vertebroplasty’ (Vertebroplasty is a minimally invasive surgical procedure in which bone cement is injected directly into the collapsed vertebrae - the bone in the spinal column. It is done to stabilise a fracture and reduce pain)
• treating the cause of the pain with chemotherapy, surgery, and radiation treatment, alone or together.

A combination of these methods may achieve the best results. How and where the pain is felt, and how it affects your life, can change. Regular reviews by pain management experts will ensure the best results are achieved.

Pain-relieving drugs

There is a range of pain-relieving drugs (analgesics). Some may be mild, like paracetamol; moderate, like codeine; or strong, like morphine. Pain-relieving drugs may be taken in tablet form (orally), as suppositories, syrups, infusions, patches (like skin patches), and injections.

Other drugs may also be prescribed, such as non-steroidal anti-inflammatory drugs (NSAIDs), and bisphosphonates for bone pain. For nerve pain (neuropathic pain) other treatments include antidepressants and anticonvulsants, or a nerve block, used singly or in combination.

Steroids may be used to relieve pain due to cancer pressing on a nerve, cancer in the brain, or cancer in the liver.

Breathlessness

Some people with advanced cancer experience breathlessness. Your breathing rate goes up or you feel you cannot catch your breath.

Treatment will depend on the reason for your breathlessness; for example, you can be short of breath if there is fluid around your lungs (pleural effusion). This may need to be drained, or medication may be prescribed if you have an infection. Or it could be caused by the cancer itself, scarring from radiation treatment, or pressure from a swollen abdomen.

Asthma or emphysema might be present. Whatever the cause, anxiety can increase breathlessness.

Relaxation can help:

• You may want to practise breathing techniques, alone or with someone else.
• To slow down your breathing, try breathing with someone else. You might like to practise this when you are not breathless.
• Sit up to ease your breathing or lean forward resting on a table.
• Listening to a relaxation tape or CD can be helpful.
• Have a fan in the room or open a window and get a draught of air moving near your face.

Your doctor may prescribe a small dose of morphine which can be taken for the relief of breathlessness.

It is important to discuss any concerns you have about your breathing with your doctor.

Lack of appetite

Many people who have advanced cancer lose their appetite and lose weight. This can be the most obvious sign that you have advanced cancer.

Some ideas to improve your appetite:

• eat small meals and snacks frequently
• add ice cream or fruit to a drink to increase calories and nutrients
• try food supplements such as Complan, which is available from a supermarket.

If you are not eating properly because you have a sore mouth, tell your doctor or nurse.

Also see Eating problems with cancer and Eating well when you have cancer

Financial assistance

You might feel concerned about the financial impact of your advanced cancer.

You may qualify for a benefit and be able to get extra help through accommodation supplements and assistance with medical bills, and possibly transport and accommodation costs for medical appointments.

For information about income support, benefits and entitlements, phone the Work and Income Contact Centre on 0800 599 009 or visit the WINZ website: www.workandincome.govt.nz

Other services

Other services you may be entitled to include: home help, nursing care, palliative care, respite care, and hospice care. It may also be possible to hire medical equipment to use at home.

Pastoral care workers are able to discuss practical and spiritual concerns (from all religious and non religious viewpoints).

Ask your doctor, nurse, hospital social worker, palliative care service or local Cancer Society for advice about these services.

How long have I got?

It may be tough if you are told that your time is short. Your mind and feelings may become focused and you may find yourself making decisions about things that are important to you.

People living with advanced cancer say how important it is to say goodbye to people – work colleagues as well as family and friends – and to make arrangements for the future care of their pets.

Making a will

A will states what is to happen to a person’s belongings when he or she dies. For those left behind, a will simplifies matters, especially if a person leaves assets, such as property or money. A will also helps to ensure that ‘special things’ are given to the right people after death.

If you had made a will before your cancer diagnosis, you may wish to review it to make sure it reflects your current wishes. Contact your lawyer for advice on wills and other legal issues.

Related topics

Also see Advanced cancer sites and Advanced cancer - treatment

Original material provided by the Cancer Society of New Zealand, 2008. Edited by everybody, August 2010.