Coping and support when you have secondary breast cancer

Secondary breast cancer means cancer that has spread to other areas of your body, such as the liver or lungs. You might have a secondary cancer at diagnosis, or the cancer may have come back after previous treatment. It is also called advanced or metastatic breast cancer.

Unfortunately secondary cancer can't usually be cured. But treatment can often control the cancer and relieve symptoms.

Your doctors and nurses will help you to make the most of life and feel as good as possible for as long as possible.

How you might feel

Finding out that you can’t be cured is distressing and can be a shock. It’s common to feel uncertain and anxious. It's normal to not be able to think about anything else.

Lots of information and support is available to you, your family and friends. Some people find it helpful to find out more about their cancer and the treatments they might have. Many people find that knowing more about their situation can make it easier to cope.

Talk to your doctor or specialist nurse to understand:

• what your diagnosis means

• what is likely to happen

• what treatment is available

• how treatment can help you

• what the side effects of the treatment are

Talking about advanced cancer

Your friends and relatives might be able to support you and talk to you about your cancer. Sharing can help to increase trust and support between you and make it easier to plan ahead. But some families are scared of the emotions this could bring up. So they may not want to discuss it. They might worry that you won't be able to cope with your situation.

It can strain relationships if your family or friends don't want to talk. You can help your family and friends by letting them know you would like to discuss what’s happening and how you feel.

You might find it easier to talk to someone outside your own friends and family.

Counselling might help you find ways of coping with your feelings and emotions.

Planning

Thinking about your priorities and planning what you want to do can help you to feel more in control. You might want to talk about how you want to spend your time and what is and isn’t important to you.

Some of your future plans might no longer be realistic. But you might get round to doing something you always wanted to do but weren’t able to make time for.

You can talk to your doctor about managing your treatment around your plans. Or if you can have your treatment at the same time. Your specialist nurse will be able to support you and help you arrange this.

Physical changes

Secondary breast cancer and its treatments are likely to cause physical problems. These might affect the way you feel about yourself.

If you have already had surgery changes to the shape of one or both breasts and scarring after surgery can affect your self esteem and how you relate to other people. Some women might also have some ongoing discomfort and soreness in their breast after surgery.

Some hormone treatments can also cause joint and bone pain. Talk to your doctor or nurse about this as they can prescribe medication to help.

Tiredness

You may feel very tired or lethargic a lot of the time, especially if you are having treatment.

Relationships and sex

The physical and emotional changes you have might affect your relationships and sex life. There are things that you can do to manage this.

Fear and anxiety

Feelings of fear or panic can be overwhelming at times. There are things you can do to help you cope with such difficult emotions.

Menopausal symptoms

If you're still having periods (pre menopausal), you might have treatment to stop your body making the hormone oestrogen. This stops your periods. This may be temporary or permanent, depending on the treatment. 

Symptoms of the menopause, such as hot flushes and sweating can be difficult to manage.

Your doctor or nurse will talk this through with you so you know what to expect. They will help you to manage the symptoms.

Hair loss or thinning

Depending on your treatment you may have hair loss or thinning of the hair. For many people losing their hair can be distressing and devastating.

It can be a constant reminder of your cancer and what you’re going through. 

Your doctor or specialist nurse can tell you more about the risk of hair loss or thinning with your type of treatment.

Feeling as well as you can

It is important that you feel as well as you possibly can. Tell your doctor or nurse about any symptoms you have so they can help to control them.

You might have a symptom control nurse or community specialist palliative care nurse. They might be called Macmillan nurses and hospice nurses. They are very experienced in controlling cancer symptoms such as pain control, sickness, and other cancer symptoms. They also provide emotional support to you and your carers.

Coping practically and financially

Practical things you and your family might need to cope with include:

• money matters
• financial support, such as benefits, sick pay and grants
• work issues
• childcare
• Blue Badge applications
• help with travel costs
• changes to your house

Talk to your doctor or specialist nurse to find out who can help.

Getting help early with these things can mean that they don’t become a big issue later. It may be helpful to see a social worker. Many hospital cancer departments have a social worker available for patients.

The social worker can let you know which benefits or grants you can claim and help with the claiming process. You might be able to get some benefits for yourself and the person caring for you. You might also be able to get grants for heating costs, holidays and other household expenses related to your illness

Spiritual support

Some people find great comfort in religion. You might find it helpful to talk to:

• a local minister
• a hospital chaplain
• a religious leader of your faith

Who can help?

You can get emotional and practical support through your hospital, local hospice and GP surgery. You can also get help from charities and support groups.

Support at home for you and your family

You might need some care and support at home due to secondary breast cancer. A lot of practical and emotional support is available to you.

GP and nursing support

Your GP manages your healthcare when you are at home. They can help with any medical problems that come up. They can also make referrals to a community service for you. The availability of the different community services may vary depending on where you live.

Community or district nurses

These nurses work in different places in your local area and may visit you in your home. They can:

• give medicines or injections
• check temperature, blood pressure and breathing
• clean and dress wounds
• monitor or set up drips
• give emotional support
• teach basic caring skills to family members where needed
• get special equipment such as hospital beds, special mattresses, commodes or bed pans

Community services vary from area to area. Your hospital specialist nurse can tell you what is locally available to you.

Lymphoedema specialist nurses

Some women develop lymphoedema during or after their treatment. This is a long term swelling due to fluid build up. Lymphoedema specialist nurses often run clinics and provide practical and emotional support.

Community specialist palliative care nurses

Community specialist palliative care nurses include Macmillan nurses and hospice nurses. They specialise in symptom management such as pain control, sickness, and other cancer symptoms. They also give emotional support to you and your carers.

Marie Curie nurse

Marie Curie nurses give nursing care to people with advanced cancer in their own homes. They can visit during the day or spend the night in your home to give your carers a break.

Social workers

Social workers can help to support you with your situation at home. They can arrange:

• home helps to help with shopping or housework
• home care assistants for washing and dressing
• meals on wheels
• respite care

Your social worker can also help with money matters by checking you get all the benefits you are entitled to. Or they can advise you about charity grants for things like extra heating costs or special diets.

Contact a social worker yourself by getting in touch with your local social services office. Or ask your hospital nurse or your GP to refer you.

Local support services

There is usually other help available but services can vary from place to place.

Sometimes local voluntary groups offer sitting services. Someone comes to stay with you while your relative goes out.

Good neighbour schemes offer befriending or practical help with shopping or transport.

Local cancer support groups often offer practical help. And they are a good source of information about services in your area. Ask your doctor or nurse about local groups.

Towards the end of life

It’s natural to want to find out what is likely to happen in the last few weeks or days of life.

You might need to choose where you want to be looked after and who you want to care for you.