Coping and support when you have breast cancer

You may find it difficult coping with a diagnosis of breast cancer both practically and emotionally. The following information might help you to cope.

You are likely to feel very uncertain and anxious about the future knowing you have cancer. You may find it impossible to think about anything other than having cancer.

Some people say a diagnosis of cancer helps them appreciate ordinary everyday things much more than they did.

If you have secondary breast cancer Open a glossary item you will need to work out your priorities. Unfortunately secondary cancer can't usually be cured. But treatment can often control the cancer and relieve symptoms. So you may want to think about how you want to spend your time - what is important to you and what is not.

Some of your future plans may no longer be realistic but you do not have to abandon them all. You may be able to adapt some. And you may get round to doing something you have always wanted to do, but were not able to make time for.

Your doctors and nurses are there to help at whatever stage of your breast cancer journey. Its important to ask questions and contact them when you need them.

Your feelings

You might have a number of different feelings when you're told you have cancer.

You may feel shocked and upset and find it difficult to take in anything else that is being said to you. Other emotions include feeling:

numb
frightened and uncertain
confused
angry and resentful
guilty
sad

You may have some or all of these feelings. Or you might feel totally different. You may feel them a few at a time or altogether, leaving you feeling exhausted.

Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all. You need to do what’s right for you to help you cope.

You may think you should be talking all this through with your partner, other family members or close friends. But you may find this really hard to do.

Or you may want to talk to someone straight away to help you work out how you are feeling.

There is no set way of handling your news, but experiencing different feelings is a natural part of coming to terms with having cancer. All sorts of feelings are likely to come and go, some may even come up when you are not expecting it.

How you might feel with secondary breast cancer

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

Helping yourself

You may be more able to cope and make decisions if you have information about your type of cancer and its treatment. Information helps you to know what to expect.

Taking in information can be difficult, especially when you have just been diagnosed or given news about your outlook. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask. They can also help you to remember the information that was given. Getting a lot of new information can feel overwhelming.

Ask your doctors and specialist nurses to explain things again if you need them to.

You might feel that you don’t want to know much information straight away. Tell your doctor or nurse. You will always be able to ask for more information when you feel ready.

Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.

You can also do practical things such as:

making lists to help you
having a calendar with all appointments
having goals
planning enjoyable things around weeks that might be emotionally difficult for you

Talking to other people

Talking to your friends and relatives about your cancer can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation or be afraid they will say the wrong thing.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.

Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.

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

For support and information, you can call the Cancer Research UK information nurses. They can give advice about who can help you and what kind of support is available. Freephone: 0808 800 4040 - Monday to Friday, 9am to 5pm.

Or you may want to see a counsellor.

Cancer chat

You can chat with other people affected by cancer in our online forum.

Specialist nurses

You usually have a clinical nurse specialist called a breast care nurse who follows you from when you get your diagnosis, through treatment and in follow up. They can help you if you’re finding it difficult to cope or if you have any problems. They can get you the help you need as well as give you information.

Support groups

You may find it helpful to go to a support group to talk to other people affected by cancer.

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

Physical problems

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

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

Tiredness and lethargy can be a problem during treatment. Resting but also doing some gentle physical activity can help.

Menopausal symptoms

Some treatments can cause an early menopause and you might have symptoms such as hot flushes and sweats. Your nurse will talk to you about how to cope with the symptoms.

An early menopause also means that you are no longer able to become pregnant. This can be very difficult to cope with if you were hoping to have children in the future. Your doctor will talk to you about this before your treatment. It's sometimes possible to store your eggs or embryos before treatment starts.

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.

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.

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.

If you have secondary breast cancer 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.

Support at home for you and your family

You might need some care and support at home due to breast cancer, its treatment or when you have 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 nurse

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 commodes or bed pans

Community specialist palliative care nurse

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 nurses

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.

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.

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.

You can call the Cancer Research UK information nurses if you have questions or want to talk about coping with advanced cancer. Call free on 0808 800 4040, from 9am to 5pm, Monday to Friday.

Life after cancer

In this video Yvonne shares her story of life after breast cancer and how she coped when her treatment finished. She talks about some of the physical effects of the cancer and its treatment and what helped her through.

She and her sister Sonia also talk about what it was like going to check up appointments, something that is not always easy. Coping after treatment finishes can be challenging and hearing about how other people cope can help.

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Transcript

Yvonne: My name is Yvonne Pickford. I live in Birmingham and I’ve had breast cancer.

Sonia: Yvonne having breast cancer I feel has tightened the bond between us as sisters.

Yvonne: She helped me to stay strong and it was nice to have her there as my crutch

Sonia: When Yvonne informed me that her treatment was successful it took a while to sink in but then I thought, yes.

Yvonne: It is something that you just want to shout from the rooftop. I did it. And at the same time a little bit frightened of what do I do now. Where do I go now?

Because I was feeling uncertain, because I was feeling low, I decided to go to counselling.

The words of wisdom would not necessarily come from the councillors and psychologists that were there, they would come from the other group members.

It was nice to have people to talk to that had been on the journey and I found that it helped immensely. Definitely worth it.

I still had yearly check-ups which was a bit of a rollercoaster leading up to them.

Sonia: there was always that anticipation, fear as to what the outcome of the appointment was going to be.

Yvonne: But as time went on it became easier it became part of our normal you know, routine.

I still had a lot of fatigue, one breast was smaller than the other, I still had the scars. And also my treatment pushed me through early menopause which I was not ready for.

Sonia: These hot flushes that she would have became her tropical moments.

Yvonne: One of the things that I felt helped was to go back to my exercising. It lifts you. It just makes you be more positive.

Sonia: Having cancer was traumatic for Yvonne but it was also a wakeup call for the whole family. We appreciate all of the times that we have together.

Yvonne: Life is wonderful, life is good. You know, you’ve been through so much and you’re a stronger person for it. You have a different zest for life and you just love it.