Fact sheet: Information for partners

If breast cancer returns or is only detected after it has already grown a lot or spread into the rest of the body, it is usually a great shock – for your partner, but also for you and the whole family. Many questions come up: What can medicine do? What is ahead of us? What will it mean for our future together? And sometimes, also: how much time have we got left?

This fact sheet is mainly about the question of how your partner's disease can change both of your lives and what options there are for supporting your partner and coping with your own worries and fears. If you want to know how metastatic breast cancer can be treated, you will find information on this in our article "Living with metastatic breast cancer". 

How can I support my partner?

Many couples say that they find it particularly unsettling not to know what will come next. Are new symptoms a sign of something or not? Is the treatment working? This uncertainty makes some women wary of any physical change, and they feel they must be constantly watching for any sign of the disease progressing.

One option for someone who has the disease to deal with this situation is to become active and to do as much as possible to contribute to the treatment and her own wellbeing. You might be able to encourage your partner and support her by

• discussing her current state of health and the different treatment options with her so that both of you can assess them better,
• coming with her to the doctor and making sure that all of your questions are answered – because “four ears will hear more than two”,
• paying attention, together with her, to getting as much enjoyment out of life as you can, to getting exercise if possible and to eating what you like.

It is important to talk to your partner about whether this is what she needs.

When deciding whether to have a treatment or not, it may also help to discuss the advantages and disadvantages of different options together. You can offer to support your partner in making the decision, but what your partner decides is up to her.

It is not uncommon for women to withdraw for some time from their friends and other people if breast cancer progresses. Physical limitations, exhaustion and feelings of depression can all be reasons for this kind of behavior. Sometimes not wanting people to know about the disease (yet) or the fear of inadequate reactions can also play a role. It might then be helpful for your partner if you keep in touch with friends. By talking this over with your partner beforehand, you can make sure you are acting in accordance with what she wants so that she does not feel left out.

It is also possible that your partner withdraws from you, too, for some time, and that you get the feeling you can no longer reach her. If you accept that, have patience, and let her know you are there for her at any time, you might make it easier for her to become more available again.

On the other hand, despite everything, normal everyday matters as well as pleasant things and activities will also be in the foreground for both of you on many days. Many couples say that they do not want to and are not able to worry the whole time, but simply enjoy and use the time they spend with each other.

How can I deal with my partner's feelings?

During the illness and its treatment your partner may be frightened, depressed, angry or sad time and again. She might want to change things in her life and set different priorities. Or she might want to live as normal a day-to-day life as possible. Changing needs in different phases are also normal – everybody has to find his or her own way to deal with a life-threatening disease.

As her partner you can accompany her on her way – even though you might choose another form of coping, or despite the fact that her decisions question habits that have become dear to you. It may be important for your partner that you accept her decisions and the situation. It can also be valuable for you to think about what is really meaningful and central in your life.

It is important that you stay in touch with your partner and talk about both of your needs and wants. This may sound trivial, but is not necessarily easy. Someone with a serious disease often wants to talk about the disease and the symptoms, and the fears and worries that come with it. Every couple develops their own way of talking about it. Some talk about it every day, others prefer to only make it a topic every now and then.

Taking the time and showing readiness to listen can be a valuable support especially in difficult times. This is also true when you feel that you cannot give concrete help or can “only” rehash what you already know, or when you are afraid to say the wrong thing. Sometimes it is good to express your own insecurity, too. Spending time with each other without talking much can also be comforting.

With all this support, your everyday and emotional needs are important, too. This can lead to conflicts – especially if there already was a lot of tension in your relationship before. You might have different opinions about deciding on what treatments make sense or setting priorities in day-to-day life. If you argue a lot or cannot get close again at all, counseling or psychotherapeutical or psycho-oncological help can make sense.

How can I deal with my fears and worries?

You might not only have intense feelings of fear and grief, but also of anger that cancer has so suddenly disrupted your life together and that you might be left alone in the foreseeable future. You might also feel helpless: you want to carry the burden of suffering and sorrow for your partner, but do not know how. It is hard to see someone you love suffering. Some also say that they feel guilty that their partner is so ill and they are not.

All this can be a great strain. But many people do not want to put an additional burden on their partner with their own fears and worries, so they suppress these. This may be the right thing to do for some time in individual situations – in the long term this will probably not be good for you, however. If you manage to talk with your partner about how both of you are feeling at the moment, this will probably be a more feasible way to do things in the long run. Bear in mind that your partner, despite her own illness, also worries about you, and that things that are left unsaid can be a great strain on both of you.

It sometimes also helps to talk openly with a friend or relative. Psychosocial help is another option. Psycho-oncologists know the strains associated with cancer and can help relatives cope with it. It is not a sign of weakness to accept this kind of support. Most people in this situation get to a point where they need help. Cancer counseling centers and clinics usually offer counseling free of charge. In Germany, under certain preconditions, statutory health insurance funds cover the costs for psychotherapy done by practice-based psycho-oncologists.

There are also self-help groups for partners of women with (breast) cancer. They offer the chance to talk with other people who are affected by the disease who are familiar with your thoughts and feelings from their own experiences. In Germany, the Cancer Information Service, Krebsinformationsdienst, has the addresses of these self-help groups.

You might also get strength from how you yourselves have coped with difficult situations in the past. How have you as a couple or family dealt with crises up to now? Have you developed rituals like talking about the events and worries of the day during an evening walk, for example? Does humor still have its place despite the gravity of the situation? Everything that has helped you in other problematic situations can be a support now, too.

It is important that you regularly take time off to relax, meet friends, or pursue a hobby. Nobody is able to think about a disease and its consequences constantly. If you have children, it is important to spend quality and, if possible, carefree time with them too every once in a while.

What can this mean for our sex life?

As a result of the disease and its treatment, many women lose sexual interest at least for some time. Pain and physical limitations, tiredness and exhaustion, a different body image, and emotional strain, often make sexual needs a lower priority. It is not uncommon for men to be afraid during this time that their sexual needs put too much additional pressure on their partner.

And illness and therapy affect central parts of femininity: Surgery can lead to scars or to the loss of one or both breasts. Anti-hormonal therapy or chemotherapy may lead to a loss of fertility and to hormonal changes even before menopause. Many women struggle with this and ask themselves: Am I still beautiful and desirable? Am I still attractive?

You might also lose sexual desire yourself for some time – because the illness, the new life situation and the worries about your partner put a lot of strain on you. It may then be important to tell her how you feel and to explain that you are not withdrawing because of her, but because of the circumstances.

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 put pressure on yourselves. Physical contact and tenderness remain important and pleasant for most women, however. With time, many couples manage to accept the changes brought about by the illness and rediscover their desire. One way to maintain sexuality together can be to stroke and massage each other and be tender, even though sexual intercourse is not possible or wanted.

Even in healthy times, many couples find it difficult to talk with each other about their sexual life. If it is this way for you too, but you have the feeling that the lack of desire is putting a burden on your relationship, it might help to talk about your needs, anxieties and feelings, and to take your time. If the two of you cannot find a solution on your own, you can get medical, psycho-oncological or psychotherapeutical counseling. Talking with others in a self-help group may also be an option.

What will happen in my day-to-day life?

It is very important for most women with cancer to stay independent and active and have a normal everyday life for as long as possible. It is often not necessary to take over tasks for her without asking, in an intent to care, that she can and wants to do herself.

Over time, physical limitations because of the disease and treatment do mostly lead to reduced strength in everyday life, however. This can mean for you that you will have to take over more and more tasks that your partner used to do, for example, doing household chores, shopping or looking after the children. Your partner might be in the hospital or a rehabilitation clinic repeatedly for weeks at a time. It can therefore happen that, as the disease progresses, you might slowly become the person in the relationship and family who is mainly responsible for caring. Switching roles like this is never easy – especially when it comes with the burden of cancer.

Other new tasks might also lie ahead of you: there is a lot of organization that needs to be done concerning the disease. And the financial situation has to be clarified: If your partner works, the question is whether she can continue to do so and, if not, what the financial consequences are. It might be necessary that you learn something about home care. Many people find it a great challenge to juggle the increasing number of household tasks and home care together with the life they have led so far – particularly if they are still working.

Who can support us?

If you try to master all these challenges on your own you can reach your limits fast. It is important to look after yourself and be realistic about what you can do and when you have reached your limits. Looking for help and support in time is a precondition for you being able to be there for your partner when she needs you.

In Germany, there are many options for getting practical support. Health insurance pays for home help under certain conditions, for example. Care support centers (in German: Pflegestützpunkte), your health or long-term care insurance fund can give advice on the services you are entitled to. These institutions offer individual counseling for relatives too: cancer counseling centers (in German: Krebsberatungsstellen) of different organizations and the Independent Patient Counseling Germany Unabhängige Patientenberatung Deutschland (in German, Turkish, and Russian). The German Cancer Information Service, Krebsinformationsdienst, offers a German-language telephone helpline. Last but not least it can be important to include family and friends and to ask them for support to take some of the burden off you.

It is a special challenge to talk with children about the illness, particularly if they are not yet grown-up. Keeping the disease secret is not a good solution – even little children can sense that “something is wrong”. You can read more about this in the fact sheet "Saying goodbye".

How can I prepare to say goodbye?

Most people will also think of dying and death when they hear the word “cancer”. Whether your partner's disease is stable or is at an advanced stage: maybe the two of you have already thought about what will happen if she dies. Some people feel bad about already thinking about the time after their partner has died. But it is a legitimate thing to do, and for many it is important, too, to prepare emotionally and mentally.

It is very difficult to talk about death. You might have to make several attempts before both of you are ready for such talks. It can sometimes take a bit of the terror if you are able to articulate and share your deepest fears. Being sad together and not knowing how to go on can also bring a couple closer together. Some women say that they wish they could discuss the topic “dying and death” more openly with their loved ones.

If it is likely that your partner's time left will be very limited, you will probably have to make some decisions and talk about formalities. These can include financial aspects, a last will, and care for the children, but also medical and nursing care for your partner in her last phase of life. You can read more about the options of palliative care at home, in a clinic or a hospice in the fact sheet "Saying goodbye".

It is not uncommon for couples to say that they have grown together more closely during the time they are both affected by the disease, and that they have learned to value each other more. That they have learned together to concentrate on the important things, and leave unimportant things aside. Maybe you too can see your life together in this light despite all the worries and difficult times, and make use of each day as much as possible.

Author: Institute for Quality and Efficiency in Health Care (IQWiG)

Next planned update: March 2015. You can find out more about how our health information is updated in our text "Informed Health Online: How our information is produced".

© IQWiG (Institute for Quality and Efficiency in Health Care)