Recurrent non-metastatic breast cancer
If breast cancer comes back, it is often more frightening than the first time it was diagnosed. But even if it does come back, there are still treatment options. It is often possible to remove the new tumor and prevent the cancer from spreading further. Daily help and support can be important in maintaining a good quality of life.
Breast cancer is the uncontrollable growth of new tissue that starts in a mammary gland and then spreads. If breast cancer comes back after going away, it is known as recurrent breast cancer. That usually means that some cancer cells remained inside the body despite treatment, and that they have started to grow again. This can happen years or even decades after the first illness. Breast cancer also sometimes spreads to other parts of the body, forming distant metastatic tumors.
If a new tumor grows in the breast that was already affected by cancer, it is called a local recurrence. If the breast was removed, the new tumor may start growing on the chest wall or in the skin above it. “Locoregional” means that cancer cells have also spread to tissue surrounding the breast, for example in the skin, the armpit or around the collar bone. The tumor may also have spread to neighboring lymph nodes or blood vessels. If a tumor grows in the other, previously healthy breast, it is considered to be a new, different tumor.
What is the likelihood of breast cancer returning?
The risk of breast cancer returning after successful initial treatment will depend on things like
- how many lymph nodes contained tumors the first time cancer was diagnosed,
- how large the tumor was,
- how quickly the cancer cells grew,
- whether the cancer cell growth was influenced by hormones,
- the woman’s age at the time the cancer was first diagnosed, and
- whether cancer cells have spread through the lymph vessels in the skin (inflammatory breast cancer).
About 5 to 10 out of 100 breast cancer patients will have local or locoregional recurrence after breast-conserving surgery and radiotherapy within ten years of first being diagnosed with breast cancer. If the breast was removed in the course of initial treatment, about 5 out of 100 women will have a local recurrence in the armpit or the chest wall within ten years.
Some women wonder whether their lifestyle may have been a contributing factor to the tumor coming back. But these worries are unfounded: Breast cancer recurrence has nothing to do with lifestyle choices, character traits or emotional stress.
How is recurrent breast cancer diagnosed?
Many women who have had breast cancer in the past pay close attention to their bodies and are very aware of even the smallest changes. But many physical changes or health problems have nothing to do with the cancer they had before. Signs of breast cancer recurrence may include a lump in the breast, scar tissue or the chest area, as well as inflamed skin. Some women will notice these changes themselves, or a doctor might find them during an examination, for example during a check-up.
If you suspect that your breast cancer has come back, your doctor is the first person to go to. You might be referred to a hospital, tumor center or certified breast center for additional tests. If you are no longer at the same practice or center where you were treated for breast cancer the first time, it is important to bring along as much information as possible about your previous treatment. You can also consent to doctors sharing the relevant information about you with each other.
After a detailed talk about your medical history, you will have a physical examination, mostly to inspect the breast or the surgical scar. If breast cancer has come back, your doctor will also check whether the tumor has spread to the other breast or any other parts of your body. Any abnormalities in the body will be examined more closely. The breast cancer will then be classified using certain criteria, in the same way that it was when you first had this disease.
What can you expect from treatment?
If it is possible to completely remove the tumor and there are no distant metastases, even recurrent breast cancer can be cured.
The odds of being able to get recurrent breast cancer under control depend on a lot of factors, including the following:
- The size of the tumor
- Whether it is confined to the breast tissue and where in the breast it is located
- Whether the tumor growth is affected by hormones
- Whether the cancer cells have growth factor receptors (HER2 receptors) on them
- How much the cancer cells have mutated
- How many cancerous growths there are
- Whether the cancer cells have spread through the lymph vessels in the skin (inflammatory breast cancer)
- Whether all of the tumor tissue can be removed
- Whether it has already spread to other parts of the body (distant metastasis)
- How long ago breast cancer was first diagnosed
What treatment options are available?
The standard treatment for local or locoregional recurrence is to try to surgically remove as much of the tumor as possible. Neighboring lymph nodes are sometimes also removed.
Surgery after previous lumpectomy
If breast-conserving surgery (lumpectomy) was performed the first time breast cancer was diagnosed and a tumor has grown back in the same breast, the complete removal of the breast (mastectomy) is usually recommended. This involves removing the entire mammary gland tissue and surrounding skin, but not the chest muscles. The nipple can also be spared if it doesn't contain any cancer cells and immediate reconstructive surgery is also planned. Abnormal or cancerous lymph nodes are typically removed as well.
If the tumors are small and limited, a second lumpectomy might be an option. That will depend on the location of the tumor and how long ago the first diagnosis was made. More radiotherapy may be needed after a lumpectomy.
It is often possible to reconstruct the breast after a mastectomy. This procedure can already be started during the operation (immediate reconstruction), or it can be done at a later stage. Doing the procedure later gives you more time to think over the pros and cons of the various options. Having reconstructive surgery later on will mean another operation and another stay at the hospital.
Surgery after previous mastectomy
A recurrence after mastectomy means that the tumor has either grown back in the scar tissue, the chest wall or in neighboring tissue. The aim of treatment is again to try and remove the entire tumor if possible.
Treatment with medication
If the tumor is too big to be removed surgically, chemotherapy may be used first to shrink it. This treatment is also commonly referred to as neoadjuvant chemotherapy.
In principle, it may make sense to start treatment with medication right after surgery – just as it might the first time someone is treated for breast cancer. The medication that is then used is usually different from the medication used during the initial treatment. Anti-hormonal therapy to stop tumor growth is an option for women who have a hormone-sensitive tumor.
If radiotherapy was not used during the initial treatment, it can be used on the surrounding tissue to try to destroy any cancerous cells that may still remain. Radiotherapy is also likely to be offered if the tumor can't be surgically removed. Tissue previously exposed to radiation can be treated with radiation again – possibly with a lower level of radiation – provided that enough time has passed since the initial treatment was done. If the initial treatment is still relatively recent, the tissue is generally too sensitive to tolerate more radiation.
Considering treatment options
Before you decide whether or not to have a particular treatment, there is usually enough time to talk to your doctor about the possible benefits and the expected side effects, and to discuss the options with your family and close friends. You always have the right to get a second opinion or to decide not to have certain treatments.
You will usually be referred to a certified breast center, tumor center or specialist oncology practice to put together a personalized breast cancer treatment plan and have treatment. Specialists from different disciplines work together to tackle the various physical and psychological effects of the disease and the treatment. But you can also choose to have treatment at a non-certified hospital or a gynecology practice. Your gynecologist or family doctor might be able to carry out some treatment steps and check-ups as well.
What are the effects of treatment?
Removing lymph nodes from the area around the affected breast and the armpit can cause lymphedema. This is where the arm or chest on the affected side becomes swollen because lymph fluid (lymph) builds up there. It is important to treat lymphedema as soon as possible because symptoms can get worse over time and then become more difficult to treat.
Depending on how extensive surgery was, the wound may be painful and heal slowly, and there will almost always be visible scarring. Surgery may also make the skin less sensitive and make it more difficult to move the shoulder. One common side effect of cancer treatment is fatigue – debilitating physical and mental exhaustion.
Losing one or both breasts is a tough blow for a lot of women. The breast is a symbol of femininity, sexual attractiveness and maternity. Losing a breast may stoke fears of no longer being attractive or able to enjoy sexuality, or women may even worry that their partner will leave them. So it can be worth getting a second opinion and looking over more information before deciding whether or not to have surgery. After a breast is removed, it may be possible to reconstruct it through surgery. There is usually no need to rush into a decision.
What can you do for your general wellbeing?
It's important for women with breast cancer to take good care of themselves. Here are some ways to actively enhance your treatment and to do something good for yourself:
- Get regular exercise, if possible
- Eat things that agree with you and that you enjoy
- Find the right balance of activity and relaxation
- Get as much restful sleep as you can
- Generally do things you enjoy
A personalized exercise program is another way to reduce exhaustion (fatigue) and improve sleep, lightening your mood and seeing your body in a more positive way again. You can also take part in special sports activities offered as part of follow-up care after cancer treatment. It's important to enjoy exercise, feel good while you're doing it, and avoid overdoing it.
Many people think that certain diets can prevent cancer or speed up recovery. But reliable research on how nutrition influences breast cancer hasn't yet found any direct effects on the risk of getting it or on how it progresses.
How can you cope with negative feelings?
New fears and disappointment about this setback to your health, anger about the unfairness of your situation or being envious of healthy people are all perfectly natural reactions and are nothing to feel bad about. In the long run, however, it might be better for your general wellbeing to learn how to deal with negative feelings and thoughts so that you still have space for other things as well.
Many women say that it comes as a relief to accept feelings of anxiety, worries and despair and to talk about them with people close to them. As well as talking to your partner, family and friends, professional counseling might also help. Religious organizations and hospitals also offer pastoral or spiritual support. Sharing your experiences with other women in a self-help group is another option.
It can sometimes help to put anxieties and worries aside for a while. Concentrating on pleasant things or activities can help reduce fears and tension to a manageable level.
Talking to family and friends about your illness
Women who have breast cancer are often concerned about how the disease will affect their relationship with their partner and – if they are mothers – their children. The stress of treatment often makes sexual needs a lower priority for a while. It can affect your daily routine and require a lot of decisions and planning. All this can give rise to conflicts. It's important to keep talking to your partner. If you have reached your limits you can get psychological counseling or support, either individually, or as a couple.
Whether children are still very young or already grown up, many mothers find it difficult to talk to their children or grandchildren about their disease. It might stir up memories of the first time they were diagnosed and the same fears may resurface, along with new worries as well. But even if you would rather protect your children from this situation, children do sense when something is wrong. So it is a good idea to speak openly with them about the cancer coming back and about the fact that there may be more treatment to come, and that you may once again need to rest more often.
Younger children may often worry that they are to blame for the cancer. It is important to let them know that that is simply not true. Children need day-to-day life to be as regular as possible in this kind of situation, and require a lot of loving attention. Friends and family can sometimes provide support here, and psychologists can be of valuable help too. There are also special rehabilitation programs that mothers can participate in together with their children.
Where can you get support?
Coping with a diagnosis of local or locoregional recurrence, and working through the existential fears and worries that it may trigger, is anything but easy. Starting cancer treatment again can also take a heavy physical and emotional toll. Nowadays, good-quality treatment will also include the option of psycho-oncological counseling. Psycho-oncologists have special training in psychology, medicine and/or social work and are there to support patients and their family and friends in dealing with the illness.
In hospitals, psycho-oncological support is mainly provided by doctors and nurses. They may work together with psycho-oncological services. Psycho-oncological support is also offered as part of rehabilitation. Outpatient psycho-oncological help is available as well.
Various forms of psychotherapy may also be offered to help you if you are experiencing longer-term fears or other negative feelings. You can have therapy or counseling either individually, together with your partner, or in a group with others affected by breast cancer.
One way to reduce stress and better get to grips with your fears and the effects of treatment is by learning relaxation techniques like progressive muscle relaxation, autogenic training or exercises to channel your thoughts. Relaxation courses are often offered at rehabilitation clinics, but they may also be offered at doctors' or psychotherapists' practices. In Germany, the costs will be covered by statutory health insurers if you have a prescription from your doctor.
Self-help groups offer women the opportunity to meet others who have first-hand experience with the feelings and practical problems associated with recurrent breast cancer. Women with recurrent breast cancer might already be familiar with that from their first illness: Self-help groups allow them to talk about things that are usually difficult to bring up with people who haven't had cancer. That can be a great relief. Many women say that they draw strength from the solidarity and helpfulness that they find in self-help groups. These groups often offer other things as well, such as special sports activities or help with social law issues.
In Germany, you are entitled to a variety of services and financial support, including sickness benefit and help with nursing care, as well as home help and childcare. There are a number of places you can go to for advice and help if you want to apply for support. Experts can assist you with personal decisions as well as with financial and legal matters. Individual advice – either over the telephone or in person – is available from
- the Cancer Information Service (Krebsinformationsdienst – in German),
- various cancer information centers (in German),
- health insurance companies and pension funds, and
- local (psycho)social counseling centers – the social services department or your local health authorities can tell you who to contact.
Hospital support services can also help you to apply for further social or financial help. Rehabilitation information centers can tell you more about medical and job-related rehabilitation and help with filing applications. You can get their addresses from your health insurance or pension fund.
What else can I do?
When someone has a local or locoregional recurrence, their fear of the disease getting worse is often even greater than the first time they were diagnosed. But just as the disease and its treatment constantly pose new challenges, the way you deal with cancer may also keep changing. There is no one-size-fits-all solution. Everyone copes differently with a disease like this and needs to find their own way to deal with it.
Many women say they felt very down at first, but then gradually started to take stock of what was going on and began to see things differently – often feeling more mature and more aware than before. They try to live in the moment, enjoying and making the most of every single day. Some women make big changes in their lives and pursue new interests. Others take comfort in continuing to live their lives as normally as possible and trying to make the best of each day.
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Deutsche Gesellschaft für Gynäkologie und Geburtshilfe (DGGG), Deutsche Krebsgesellschaft (DKG). Interdisziplinäre S3-Leitlinie für die Diagnostik, Therapie und Nachsorge des Mammakarzinoms. AWMF-Registernr.: 032–045OL. August 2019.
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Krebsinformationsdienst (KID). Rehabilitation nach Krebs: Was hilft beim Gesundwerden? July 13, 2016.
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