My feelings and metastatic breast cancer

This page is about your feelings about having metastatic breast cancer. There is information about:

Finding out you have metastatic breast cancer

When people ask me how I felt at the beginning, I tell them that I did have doubts about the future; there were lots of tears, but gradually as time passes you think, ‘Hey, I’m still alive’, and this is the way it is going to stay. I’m not interested in statistics, I’m a person and I’m going to fight this every inch of the way. I am now way, way past my ‘use-by date’ and am going to be around until I’m really old and wrinkly. – Christine

Most people feel devastated when they are told they have metastatic breast cancer. Many will have lived through the trauma of being diagnosed and treated for early breast cancer and may have believed they were cured. As you struggle to come to terms with the fact that a cure may no longer be possible, you might feel shocked, angry, overwhelmed, afraid, disbelieving or even guilty. You may experience powerful swings in mood. Your anger may spill over into the way you react to other people, even those you love, or the doctor who told you the bad news. You will almost certainly find yourself worrying about what lies ahead, both for you and your family and friends. Anxiety can make it difficult to think clearly – you may feel overwhelmed by the prospect of making even the smallest decision.

If you think back over your life, cancer won’t be the only experience that wasn’t welcome. You’ve learnt to live with each of these experiences. You’ve grown, you’ve laughed, you’ve cried, you’ve still been a friend, partner, mother, lover, etc. You’ve still been a valuable and precious human being. This news doesn’t change any of that. It may alter the way you express who you are, but it doesn’t change who you are as a woman. – Liz

At first, you may not be able to imagine ever feeling happy or calm again. You may find it hard to believe that many people have lived through this turmoil and gone on to gain control and peace in their lives. But they have been able to do so – and it is worth trying to remember this if, sometimes, you feel trapped in the dark.

You will have black moments but those moments will pass – it might be in one day, three days or a month, but it’s important to remember it will pass. – Franca

I think you have to be strong and take control. The treatments can seem overwhelming at times but once the urgency of immediate care is over, it is critical to get on with life and actively seek to be as healthy and fit as possible.

I hope that I can help others who may have to deal with a diagnosis of metastatic breast cancer, to teach them not to be afraid. People are always surprised at how well I look and how positive and accepting I am. I have been this way for nine years, through three breast cancer diagnoses in that time! As long as I feel good, I consider myself very lucky.

Guilt about diagnosis

Some people have told us that they experience feelings of guilt and wonder if they had picked up their breast cancer earlier, or done something differently they may not have presented with metastatic breast cancer. They may wonder whether the treatments they decided to have, or not have, may have influenced their cancer returning.

Some people feel that if they had had more tests and scans as part of their follow-up care, or if the doctors had paid more attention, they may have found the metastatic cancer at an earlier stage.

The truth is that it is almost always no one’s fault, and you should not blame yourself. Sometimes it is just the fast-growing nature of a person’s cancer that is the reason it has metastasised, but that does not mean that there is not effective treatment available to help you.

Unfortunately, some breast cancers will spread whatever treatment a woman has received and whatever lifestyle changes she has made. It helps some people to understand that, unlike primary breast cancer, finding metastatic breast cancer early doesn’t usually affect treatment outcomes.

Moving forward

Spend time talking to people, most importantly your doctors, other health professionals, and people who have experienced the illness themselves. – Jill

People react to discovering that they have metastatic breast cancer in different ways. Some prefer to carry on with something as close to their daily routine as possible. Some want to transform their life completely. It is probably best to give yourself time to get over the initial shock before you make any dramatic changes. Professional support might help you to explore your options and decide what will be best for you.

When I was diagnosed, I started making drastic decisions – I was going to quit my job. One of my friends suggested a psychologist to talk about things and that was really valuable, even though it was an added expense that I didn’t need. She helped me to think more logically and to think about things in different ways. – Alisha

A diagnosis of what is described as a life-limiting disease can inspire you to take stock of your life and start thinking about the things that really matter to you, and things that make you feel good. That might mean pursuing something you’ve always wanted to do, such as travelling or taking up a creative hobby like painting or music.

We were going to buy a caravan and travel around Australia and we didn’t because I was diagnosed, but now three years on, I think we could have bought that caravan because here I am. – Catherine

You may just want to spend more time with your family and friends, or enjoy simple pleasures like being outdoors, watching movies or listening to music. You could also find that placing more focus on your general health by eating well, meditating and doing regular exercise helps you to feel better emotionally as well as physically.

My life and my identity have changed in positive and negative ways. My priorities have changed: I’m doing things now instead of putting things off until later in life. I do more things for myself. I now work three days a week instead of five. My life is not as rushed and hectic as it used to be. I don’t get upset about little things anymore. – Amina

Uncertainty about the future

It is hard when everyone else is saying they have finished their treatment when you know yours is ongoing. The emotional issues are the same, the fear of it returning,and also the fear of it spreading even further and not being able to stop it.

I asked my oncologist if I should buy a season ticket to the opera or a single performance. She was encouraging. Seven years later I still ask her, just for fun! – Moya

Generally, we like to know what to expect in life, so uncertainty can make us feel uncomfortable or anxious. We like to plan, to feel secure, to imagine that we have control over how our lives will play out. In reality, there is very little we can be sure of. If you look back at the most memorable moments in your life – good and bad – you will probably see that few could have been predicted and planned for.

Having metastatic breast cancer adds a new and complex dimension to the uncertainty, but many people have found ways to manage this.

Involve your family in setting goals: some small and easily achieved; others long term and sometimes difficult to imagine ever accomplishing. As each goal is achieved, set new ones. – Marlene

Put your seatbelt on and try to keep positive. You will feel like you are on a roller coaster – up days, down days. – Sandra

For some, knowing all about the disease and how it is likely to be treated reduces some of the anxiety. If you feel that having more information would help, don’t hesitate to ask your doctor or a health care professional.

Many people find that they gradually learn to focus on the things they can control, and then deal with things they can’t control as they arise. Relaxation, meditation or prayer may help with this.

Maintaining hope

You may feel that being diagnosed with metastatic breast cancer has robbed you of hope. The automatic assumption that everything is a disaster can be hard to shake. The reality is, however, that most people have to learn to balance hope and coping. Hopes and dreams are important to emotional health and everyone’s needs will be different. Gaining information about your treatment and care could help you to feel more optimistic and in control over decision-making about what is right for you.

Acknowledging that it is a roller coaster of hope and despair. I try to look at my life as a glass half full, not half empty. Cancer does not define me. I am still very useful to the world and to those around me that I love.

My oncologist said, ‘You’re not going to be dead in 10 minutes. I promise I’ll give you plenty of warning.’ I felt better, then realised I’d been holding my breath. – Mei-Ling

I heard that someone had survived for 15 years and I thought bloody hell this is amazing – I didn’t realise that someone could survive for that long. It gave me so much hope and I just thought ‘Well if she can do it I can too.’ – Sue

It felt like the rug had been pulled out from under me and it took me weeks before I was given any hope. Women need to know that a metastatic breast cancer diagnosis doesn’t mean you are going to be dead in weeks or months. – Anna

Over time, most women come to realise that hope hasn’t gone, although its nature will have changed. Your hope may now centre on long periods of disease control and feeling well, or enjoying a trip or a special event.

A diagnosis of metastatic breast cancer is not the end of the road, it is the start of a new journey. Some days you will be filled with fear and uncertainty, this is to be expected. Honour your feelings, they are valid; and always remember tomorrow is another day. Do not let anyone take away your hope.

Remember you are not a statistic or a number, but a woman alive and kicking. – Judy

When I was first given my prognosis, I thought I would not see my two daughters married, see any grandchildren or see much more of life. However, both our daughters are married and we have five wonderful grandchildren. I work part-time, do voluntary work, travel every year, including walking holidays, and lead a very full and hectic life. – Christine

It's okay to feel down

Having dark thoughts from time to time is normal. However, if these start to dominate your thinking it can be useful to develop some techniques for challenging them. One technique is called ‘worry postponement’. Constant worry is exhausting – but setting aside a specific time every day to ‘worry’ can help you to feel calmer for the rest of the day. If other strategies have helped you to cope with difficult times in the past you may be able to draw on them again.

Buy yourself a small gold box with a lock. Into this box, place all your worries and lock it. Open the box once a day for 5 to 10 minutes. Worry then while the box is open. Close the box, and worry no more. Allow yourself to worry about your health and future like this once a day. Don’t ruin the rest of life with constant worrying. Life is too wonderful to spoil worrying about what might be and what could have been. Celebrate what it is! – Fairlie

When to seek help

Being preoccupied with negative thoughts can be a sign of depression. Other signs include feeling low for most of the day, every day; feeling guilty or worthless or a burden on your family; and not being able to enjoy things that normally give you pleasure. Depression can also cause physical symptoms such as poor appetite, tiredness and not sleeping well. Like all health issues, depression needs professional help. Your GP will be able to refer you to someone and treatment is usually very effective.

Many women with metastatic breast cancer seek professional help with managing depression, anxiety or stress. You should not feel embarrassed about telling your doctor if you are struggling to cope emotionally or if you think you need help. You are experiencing a life-changing situation and it is normal to need support while you are coming to terms with your diagnosis and getting your thoughts in order.

A number of health professionals may be able to help you work through these issues including your GP, clinical psychologists, social workers and psychiatrists. If you feel some ongoing counselling would be of benefit, your GP can refer you to an appropriate person and arrange for you to have up to 10 Medicare-subsidised appointments through the GP mental health treatment plan.

BCNA’s Anxiety, depression and breast cancer fact sheet has more information about the symptoms of anxiety and depression and how to seek help.

To find out how to access Medicare-subsidised professional counselling, download BCNA’s GP mental health treatment plan fact sheet or talk to your GP.