Living with metastatic breast cancer

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Being diagnosed with metastatic breast cancer often means dealing with feelings of fear, anger and grief. Talking with close friends or relatives can help you cope with the flood of feelings. Exercise, relaxation and other activities that can take your mind off the cancer can improve your general wellbeing in everyday life too.

Once metastatic tumors have developed outside of the breast tissue, complete recovery can rarely be expected. Then the aim of treatment is to keep your overall health and quality of life as good as possible for as long as possible.

It is common to worry about only having very little time left. At the start it might feel like your entire life is now about waiting for the cancer to progress, new symptoms to arise and further treatments. This can make you feel dejected and hopeless, which may sometimes be more draining and troubling than the physical effects of the disease and its treatment. Many women also feel lonely at times, cut off from the outside world and their friends.

Coping with fear, anger and grief

You might experience a range of different emotions that can change suddenly, including grief, fear, disappointment about health setbacks, as well as anger about how unfair your situation is or envy of people who are healthy. That's absolutely normal and nothing to feel guilty about. In the long run, however, you will feel better if you learn how to prevent negative feelings and thoughts from dominating your life.

Many women say that it comes as a relief to admit to feeling scared, anxious or desperate, and to be able to talk things over with close friends or relatives. As well as talking with your partner, family and friends, psychosocial counseling and special 'psycho-oncological' counseling for people with cancer can also be helpful. Your pastor or hospital staff may be able to provide spiritual support too. Self-help groups give you the chance to share your experiences and feelings with other women in similar situations. They are likely to understand what you are going through.

When dealing with your fears it can help to find out exactly what it is about a specific situation that you are afraid of: Is it pain or other symptoms of the disease? Is it a treatment you are about to start or the uncertainty of what will happen? Once you have named your fear you can get to the root of it and seek the information and support you need.

There is no reason to feel bad if you find it hard to face your anxieties and worries. One way of coping with the cancer is to concentrate on other things and take your mind off it for a while. If you are afraid to go in for treatments or doctor’s appointments you can ask someone close to you to come with you. Relaxation techniques, exercise or enjoyable activities that can help take your mind off things can help to reduce anxiety.

Finding your own way to cope

Dealing with fear and grief involves both gradually accepting the things you cannot change and finding a way to live with the situation. There is no "best way" to do this. Everyone who has a life-threatening disease copes with it in a different way. The way you handle it might change from one day to the next, depending on how you are feeling, your current needs and the challenges you are facing.

Women often say that dealing with the disease has helped them a lot and changed them as an individual. After feeling down for a while they were able to slowly find their bearings and re-evaluate a lot of things in their life. Many of them find that they have become wiser and more aware as a result. They try to live in the moment, and enjoy and make the most of every day. They often make more time for their friends and family, or for their hobbies and to relax.

Some women make major changes in their lives or pursue new interests. Others take comfort in continuing to live their lives as normally as possible and trying to live each day to the fullest. It can help to keep up typical routines, like household chores, caring for children or doing regular volunteer work.

Psychological support

Therapy and counseling

If you have the feeling that fears and depressive moods are taking over, and you feel powerless and don't know what to do about it, getting specialist psychological support can be invaluable. It can also help you get a better understanding of your situation, or if you don't know how to talk about it with friends and relatives.

The services offered include special 'psycho-oncological' support for people with cancer, as well as psychosocial counseling and different types of psychotherapy, some of them body-oriented. You can have therapy or counseling either individually, together with your partner, or in a group with others who have breast cancer.

Relaxation and pain management

Psychological support includes learning about strategies you can use yourself to improve your wellbeing. For instance, you can learn relaxation techniques like progressive muscle relaxation, autogenic training or exercises to focus your perception. These techniques are a way to reduce stress, deal with your fears and better cope with pain.

You probably know from experience that certain situations and circumstances can increase or reduce the amount of pain you feel. Pain management therapy includes things like finding out what influences your pain perception and what changes you can make in everyday life.

Rehabilitation clinics often offer relaxation classes and pain management therapy. Some practice-based doctors and psychotherapists with additional training in pain therapy offer courses, too. In Germany, statutory health insurance funds will cover the costs if you have a prescription from your doctor.

Research summaries

Dealing with fatigue

Metastatic breast cancer and the associated treatments can lead to fatigue. Some women are hardly affected by it, but others may have very severe or persistent fatigue, or it might come back again and again.

Severe fatigue can significantly affect your everyday activities and quality of life. It can be accompanied by problems sleeping, concentrating, and remembering things, as well as feeling down. It is not known what exactly causes fatigue. A great deal of physical and emotional stress is assumed to be responsible. For instance, the disease and associated treatments can lead to weight loss and weakness. Some women experience fatigue as an expression of the intense emotional distress caused by the disease.

Unlike normal tiredness, rest and sleep have a minimal influence on fatigue. Although you might not expect it to, the right kind of physical activity, such as regular brisk walking or low-intensity aerobics, is more likely to make you feel less tired. The following approaches might also help to cope with fatigue:

  • Planning your day: Watch how your energy levels change over the course of the day and plan activities and breaks accordingly
  • Setting priorities: Delay things that are less urgent and let others take care of less important tasks
  • Doing one thing after the other: Break up activities into small steps, only concentrate on one task at a time
  • Organizing practical help: For instance, get support in everyday life from a domestic helper
  • Distracting yourself: Do things you enjoy, like listening to music, reading, and watching television
  • Don't sleep too much during the day: Only take very short naps if you have to and try not to spend too much time sleeping during the day - doing so will disturb your nighttime sleep

Taking good care of yourself

It is especially important for women with metastatic breast cancer to take good care of themselves. Here are some ways for women to actively support their treatment and do themselves some good:

  • Get regular exercise if possible
  • Eat what you feel like
  • Find the right balance of activity and rest
  • Get as much restful sleep as possible
  • Generally do things that make you feel good in this difficult time

Some women find that paying close attention to good body care makes it easier to deal with changes caused by the disease and the associated treatments. Special care products can be used on skin after radiotherapy and on scar tissue. Aside from that, gently applying lotion and having a light massage is an easy way to do something good for yourself.

Exercise

Regular exercise can help some women to maintain or improve their physical fitness. An individualized exercise program is one way to relieve states of exhaustion, improve sleep, lighten your mood and see your body in a more positive way again. Special exercises led by a physiotherapist can help improve flexibility and muscle strength after surgery. Exercise also seems to have a positive effect on lymphedema-related problems.

If you have metastatic cancer it is important not to be afraid of exercise, but to talk with your treatment team about what physical activities are possible and helpful. These may include regular walks, swimming, hiking, dancing or low-intensity exercises. It is important that you enjoy the exercise and feel good during it, and that you don't overdo it.

You can also participate in special sports activities offered as part of cancer follow-up care. Your doctor can prescribe these courses. They are covered by statutory health insurers in Germany if you have a prescription. Organizations like cancer information services and local self-help groups can help you find out what sports courses are offered in your area.

Some women find it hard to exercise or feel depressed if they do not see any improvement. If you feel that way too, one option is to take a break for a while. You might feel more like getting exercise after some time, and then start up again. The important thing is to make sure that what you do feels good.

Diet

Many people think that certain diets can prevent cancer or help them get better. But research on the influence of diet in breast cancer has not yet found any direct effects on the risk of developing cancer or on how the disease progresses. So you can eat what you enjoy and what you feel like.

Sexuality

It is normal for women to feel less sexual desire as a result of the cancer and the treatments they have. Sexual needs often become a lower priority due to things like the pain and physical limitations, tiredness and exhaustion, a new body image, and emotional distress. What's more, the treatment affects key aspects of femininity: One breast may have been removed or it might now have scars on it. Hormone therapy or chemotherapy may lead to loss of fertility and hormonal changes before menopause.

Some women also withdraw sexually because they think their partner doesn't find them attractive anymore. But the fear of being rejected for physical reasons is usually unfounded. How a couple copes with physical changes has more to do with the way they treat each other and how they generally resolve other problems.

Women looking for a partner often worry that the cancer may have changed how they experience sexuality, and might not know how to talk about it with a new partner.

Rediscovering sexuality

Over time, it is possible to accept the changes caused by the disease and to rediscover any sexual desire that might have been lost. Satisfying sexuality is good for the body and soul. It is more than sexual intercourse, which might not always be possible, or less pleasurable at times. Also,  sexual preferences and habits differ from couple to couple, and can change over time even without an illness being involved. For instance, sexuality can become gentler with age, and you may need more time to get in the mood.

Possible ways to improve your body image and stimulate your senses include pleasurable body care or beauty treatments, as well as exercise – be it walking, yoga, dancing or pelvic floor exercises. Pampering each other with massages is relaxing and can help you feel closer (again). Some problems have simple, practical solutions: If your range of movement is limited, cushions can give support. Lubricants can help with vaginal dryness (sometimes due to hormone therapy).

It is not always easy to change habits and find new ways of doing things. It may help to take your time and talk openly with each other about your needs, fears and feelings.

If sexual desire does not return

Even if they do not have the energy or feel any desire for sexuality, physical contact and tenderness are usually important and pleasant for most women.. It can help couples to still feel intimate and close. This is easier if the partner understands the changes the woman has gone through and is sensitive to them.

A partner might also lose the desire for sex – perhaps because he or she may also feel burdened by the cancer, the new situation or concerns about their partner. Some might be afraid that their sexual needs could put too much additional strain on their partner.

It does not necessarily have to be a problem if sexuality ends up not playing a major role in your relationship for some time. As long as you feel close as a couple and accept that the breast cancer has changed this aspect of your relationship too, there is no reason to worry. But if you feel that the lack of desire is affecting your relationship, it might help to talk about your feelings and worries with your partner. You can also talk with your doctor about it or seek a sexual health center or psychosocial counseling center.

Talking about cancer

You might have noticed friends or family feeling helpless or nervous as a reaction to you having cancer. Or they might seem evasive or try to downplay the seriousness of it all. You may not want everybody to know about the cancer because you're worried about getting these kinds of reactions. At first you might also want to protect your loved ones from such troubling news. Or you could think that healthy people are not in a position to understand what you are going through anyway. All of these might also be reasons not to share your thoughts and feelings with people who know about your disease, either.

But if you talk to your partner, relatives and friends about your disease, it will make it easier for them to understand you. Talking with your treatment team and/or in a self-help group can be a great relief too. You may well find that the people who support you the most are not those you would have expected to be there for you when you were healthy. Having close people around you to cry and share your fears with, but also to experience everyday things with, and laugh and enjoy life with, can really make it easier to live with the disease.

On the other hand, some women do not want to talk about their disease and prefer to cope with these things by themselves. And that is also fine. The main thing is that you find out for yourself how you can best cope with the disease – and know who you can turn to if you need someone to talk to.

Relationships

Women with metastatic breast cancer often think about their family's future and whether their relationship will withhold the strain.

How much couples talk about the cancer and the treatment varies widely. Some couples talk about it every day, for instance about the woman's physical wellbeing. Others draw a line and have fixed times when they talk about different things, like after a doctor's appointment. Many talk with each other when the woman has new or unusual symptoms. Some say that they talk about it less  once a treatment has been decided on.

Your partner is in a difficult position. Seeing a loved one suffer and the fear of losing her is hard to bear. On the one hand, many people want to stand by their partner, help with everyday tasks and household chores, and give emotional support. And on the other hand, they sometimes need support themselves to be able to cope with the changes in their life. Some roles in the relationship will probably shift over time. Because of their disease, women may have to give up some responsibility and depend more on their partner's support than they used to. This may give rise to conflicts.

So it is all the more important to stay connected with each other and talk about hopes, fears, needs and wishes. Changes in day-to-day life will make new arrangements necessary, and finances and the household will have to be organized. In these types of situations, many couples try to continue living a normal everyday life, and to have as many good days with each other as possible without constantly worrying about the future. There is no right or wrong approach here, only your own individual path. Do not let all the well-meant advice unsettle you.

Many women are not only concerned with trying to arrange their life with their partner, but also with topics like grief, saying goodbye, and dying. It is often difficult to talk about these things. If it all gets too much, you can seek special 'psycho-oncological' or psychological support, either individually or as a couple.

In Germany, statutory health insurance funds sometimes cover the costs of specialist psychological counseling for family members too. There are now also self-help groups for family and friends. Your partner can share experiences with others there.

Children and grandchildren

As a mother or grandmother, you want to see your children and grandchildren grow up and guide them through life by giving them advice and helping them. Because of the disease, this may now only be possible to a certain degree which can be a source of deep sadness. Some women are also worried about the influence the cancer might have on their children. No matter whether the children are still young or already grown-up – many mothers and grandmothers find it difficult to talk with their children or grandchildren about such a serious condition. Nevertheless, many women say they felt the need to talk with their children about the diagnosis and the disease.

Even young children can sense when something is not right, and will notice even small changes in your family life. So it is a good idea to be honest with them and tell them that you have a serious illness. What exactly you can talk about will depend on your children's age and maturity. If you explain to your children that you are seriously ill, it will be easier for them to understand why you are no longer able to do certain activities with them and why you need more rest. Having metastatic breast cancer also means that you will have to expect some consideration from your children and set boundaries for them. But there is no reason to feel guilty about this.

Children need a lot of attention in this kind of situation. They also need day-to-day life to be as regular as possible, as well as a lot of loving care. It is important for them to be able to share their fears and grief too. Children are often afraid that they might be responsible for the disease, so it is important to let them know that that is simply not true. Here, too, do not hesitate to get professional counseling and support if you are finding it too hard to talk with your children, or if you think that your children need additional help. Friends and family can also be of great help sometimes. Mother-child convalescent care (German: Mutter-Kind-Kur) may be an option as well.

Self-help, support and further information

Self-help groups offer the opportunity to get to know other women who have had similar experiences and know the feelings and practical problems associated with the disease. There they can discuss topics that are often difficult to speak about with people who do not have cancer. This is often a great relief. Some women are afraid that what they talk about in a self-help group might get them down. This fear is usually unfounded. On the contrary: Many women say that they feel energized by the group, that they really benefit from positive role models and the mutual support, and that the meetings also allow room for joy and laughter. Most people in self-help groups want to help give others strength and hope.

Exchanging tips and experiences with other people who are facing the same disease is the underlying principle of self-help groups. Self-help organizations offer many other things, too, including special sports activities designed for cancer follow-up care, events and information booklets on different topics, help with legal issues and, last but not least, representation in social and healthcare politics. Ideally, self-help groups should be independent of the pharmaceutical industry and only represent their members' interests. In Germany, the Cancer Information Service (in German: Krebsinformationsdienst) or your local health office (Gesundheitsamt) can provide you with the addresses of self-help groups in your area.