Metastatic breast cancer

Symptoms of metastatic breast cancer include a lump in the breast or breast area, pain in the bones or abdomen, and rather nonspecific symptoms like shortness of breath, persistently feeling unwell, nausea and exhaustion. Many women notice these changes themselves, or a doctor might notice them during an examination.

Breast cancer can develop when the genetic information the cells carry changes (mutation). How these changes come about and how the cells then develop depends on many factors that can influence one another. These factors include age, height and weight, immune system, hormones, pregnancies and breastfeeding. Breast cancer is not contagious.

Some women worry that their lifestyle was partly to blame for their getting cancer, for the tumor having come back or for the development of metastases. They might start wondering whether their lifestyle wasn't healthy enough, or whether psychological factors like stress or anxiety might have made the cancer come back. There are also various theories about how certain character traits may increase someone's chances of getting cancer. These theories have never been proven and are now considered old-fashioned. Having such a serious disease is nobody’s fault. Anyone can get cancer, regardless of their lifestyle or character traits.

Breast cancer is more common in some families. It is estimated that 5 to 10 out of every 100 cases of breast cancer are caused by genetic factors. Women with mutations in the BRCA1 and BRCA2 genes are known to have a considerably higher risk of getting breast cancer. The abbreviation “BRCA” stands for “breast cancer” gene. Between 50 and 80 out of 100 women with this kind of genetic change (mutation) get breast cancer at some point in their life. Women who have this gene but have not yet had breast cancer are typically offered special care, which may include things like regular screening tests. Even if no such genetic mutations are found, but there have been a number of cases of breast cancer in someone’s family, their individual risk might be higher.

Tumors that have developed in connection with BRCA genes have different characteristics than other tumors. The doctor will probably let you know if any of these characteristics are found in an examination. It could then be a good idea to go over the medical history of any relatives who might be at risk of developing breast cancer. You might then be offered genetic testing at a specialized center if your doctor thinks you have these mutations. People who have this kind of genetic testing also have a special consultation. Apart from that, the treatment of cancer influenced by genetic factors is no different to other breast cancer treatments.

In Germany and many other countries, breast cancer is the most common type of cancer in women. It is usually detected at in older age: 60 out of 100 women with breast cancer are over 60 years old when the disease is diagnosed. Breast cancer almost always affects women, but men can also get it, although this is rare.

Although metastases can develop shortly after the first tumor is diagnosed and treated, they often only occur many years later. Sometimes breast cancer is detected only after it has already formed metastases. In about 4 out of 100 women, distant metastases are detected when they are first diagnosed with breast cancer.

If distant metastases are found, complete recovery can only be expected in exceptional cases. But it can still be treated. The treatment can limit tumor growth, sometimes delay the progress of the disease for many years and relieve the symptoms. The possible treatment options and the likely course of the disease will depend on how many metastases have developed and where they are located. Biological characteristics of the tumor also influence what therapy can be used and how effective it is expected to be. For instance, the growth of some tumors is affected by hormones. Age and overall physical condition also play a role.

It is very difficult to predict exactly how the disease will develop. Any prognoses about chances of recovery, length of stable phases, or life expectancy are all fraught with uncertainty. Despite the seriousness of the diagnosis there is good reason to hope to live as long as possible with a good quality of life. According to the Munich Tumor Registry, about 23 out of 100 women are still alive five years after they are diagnosed with breast cancer with distant metastases. This is the case for 13 out of 100 women after ten years.

Your doctor is the first person to go to if you suspect you might have breast cancer, or if you think it has become worse or come back again. He or she might refer you to a hospital or a specialized breast cancer center for further examinations. After carefully discussing your medical history, the doctor will do a physical examination. The examinations may include a manual examination of the breast or the surgery scar, an ultrasound examination of the breast, or a tissue sample (biopsy).

It is not always necessary to have every possible examination. Your doctor will help you decide which tests make sense and are most suitable. You always have the right to refuse any of these tests.

If you have general symptoms or if breast cancer has been diagnosed (again), your doctor will check whether the tumor has also spread to other parts of your body. The following imaging techniques can be used to help detect metastases:

• Chest x-ray
• Bone scan (bone scintigraphy)
• Ultrasound of the liver

If an advanced breast cancer tumor has not spread beyond the breast area or neighboring tissue, doctors will usually first try to surgically remove all of the tumor. But this is no longer possible if it has spread to other parts of the body. Then the aim of treatment is to keep your overall health and quality of life as good as possible for as long as possible. This will include trying to stop or slow down tumor growth.

If distant metastases have developed, the entire body is usually treated with medication (systemic therapy). Systemic therapy aims to limit tumor growth and may involve either hormonal treatment or chemotherapy, or a combination of both. Some types of cancer can also be treated with targeted therapies.

The choice of treatment will depend on where the metastases are located. Bone metastases can be treated with radiotherapy to relieve pain and prevent fractures. Under certain conditions, metastases in internal organs and the skin can be surgically removed. Some metastases may be treated with either radiation or surgery. Drug therapy is usually also an option.

The aim of treatment is not only to influence cancer cells, but also to relieve cancer-related symptoms such as pain and the possible side effects of therapy. Cancer treatments can have severe side effects, and they sometimes lead to complications. One common side effect is fatigue –debilitating physical and mental exhaustion. Even severe cancer-related pain can be treated with well-managed pain relief therapy. Treatment designed only to provide symptom relief and improve quality of life is referred to as “palliative treatment.”

Metastatic breast cancer can be treated in specialized breast cancer centers, tumor centers and practices specialized in oncology. The teams that work there are made up of different kinds of health care specialists. Metastatic breast cancer can also be treated at hospitals or practices without specialized certification.

In Germany, if follow-up care is started directly or soon after leaving the hospital, it is referred to as Anschlussheilbehandlung (AHB) or Anschlussrehabilitation (ARH). Sometimes outpatient chemotherapy or radiotherapy is still needed following discharge from the hospital before follow-up care can be started. Other kinds of rehabilitative care can be started at any time.

Rehabilitative care is offered in both inpatient and outpatient settings and aims to ensure the success of the treatment, improve your physical and mental wellbeing, and to help you cope with the disease. It usually includes both sports therapy and physiotherapy, as well as activities to promote your mental and social wellbeing. It also often includes information events, group discussions, advice on sexuality and legal matters, and help finding care after rehabilitation and returning to work.

Special work-related rehabilitation measures may also cover training and preparation for starting a new profession.

Rehabilitative care usually lasts three weeks in Germany. A doctor has to prescribe it, and approval from your health insurer is also required. The hospital’s social services department can help you apply for post-hospital treatment.

You can also go to a rehabilitation service center for advice on rehabilitative care offered by different facilities. The addresses are available from health insurers or pension funds.

It is anything but easy to come to terms with the diagnosis “metastatic breast cancer” and deal with worries about the future and existential questions concerning life and death. The treatment itself can also be physically and mentally distressing. Because of this, it is important for women with metastatic breast cancer to pay close attention to their own wellbeing.

Many women say that the actual process of dealing and coping with their disease has both really helped them and brought about personal change. After an initial period of feeling down, they slowly find new orientation, re-evaluate things, and often find themselves enriched through greater maturity and awareness. They try to live in the moment and enjoy and make the most of every single day. Some women make major 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.

Just as the cancer and its treatment always present new challenges, the way you deal with them will keep changing too. There is no “right way” to do this. Everyone copes in different ways and must find their own individual path.

Many hospitals and information centers offer psychosocial and psycho-oncological support. In the hospital, psycho-oncological support is mainly provided by doctors and nurses. They may work together with other providers of specialized psychological support for cancer patients. Outpatient support is available for people who are at home (again), for instance from practices specialized in oncology or from special cancer information centers.

Relaxation classes and help with pain management are often offered by rehabilitation clinics, practice-based doctors and psychotherapists. In Germany, the costs are covered by your health insurance if you have a prescription from your doctor.

Self-help groups give you the opportunity to get in touch with other women who have first-hand experience with the feelings and practical problems associated with breast cancer. There you can discuss topics that are often difficult to speak about with people who do not have cancer. This can be a great help: Many women say that they draw strength from the solidarity they find in self-help groups and from the eagerness of other members to help. These groups often have more to offer as well, including sports groups or help with legal issues.

In Germany people are entitled to a variety of services and financial support, including things like sickness benefit, help with nursing care, household and childcare. There are many places you can go to for advice and help if you want to apply for support.