Metastatic breast cancer

Symptoms of metastatic breast cancer include a new lump in the breast, or pain in the bones or abdomen (belly). There may also be less specific 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 forms when the genetic material in breast cells changes (“mutates”) and causes them to start multiplying in an uncontrolled way. Lumps and nodules then form after some time.

Cancer cells can break away from the original tumor and travel to other parts of the body in the bloodstream or the lymphatic system. They are usually detected and then destroyed by the immune system. But if the cells manage to settle in other organs or tissue and multiply there, they can develop into metastatic tumors.

Doctors don't know exactly why some cancer cells leave the original tumor. It also isn't clear why some of these traveling cells continue to grow while others don't. Another unanswered question is why some metastatic tumors cause symptoms early on, but others don't until years later.

Breast cancer usually develops by chance – there is no particular reason why. The main risk factors include the woman’s age, hormones, and whether there is a higher risk of breast cancer in her family. The likelihood that metastatic tumors have already developed depends on various properties of the tumor. It is also higher if the original tumor was first discovered at an advanced stage.

Some women worry that they might be partly to blame for the cancer spreading because of their lifestyle. But lifestyle factors generally play only a minor role in the development of cancer and the growth of metastatic tumors.

In Germany and many other countries, breast cancer is the most common type of cancer in women. About 13 out of 100 women get it at some point in their lives. It is usually detected in older age: More than half of all women with breast cancer are over 60 years old when it is first diagnosed. Men can get breast cancer too, although this is very rare: About 0.5 to 1% of all people who have breast cancer are men.

Metastases often develop within the first few years of being diagnosed with breast cancer, but they can also arise much later. Breast cancer metastases are most common in bone tissue, in the liver and in the lungs. They can also form in the brain or skin, but that’s less common.

Sometimes breast cancer is detected only after metastases have formed. About 3 out of 100 women already have distant metastases when they're first diagnosed with breast cancer.

If distant metastases are found, complete recovery is very rare. But the disease can still be treated. The treatment can limit tumor growth, sometimes delay the progression of the disease for many years and relieve the symptoms. The treatment options and the likely course of the disease will depend on various factors, including how many metastases have developed and where they are in the body. The biological characteristics of the tumor also influence what therapy can be used and how effective it's expected to be. For instance, the growth of some tumors is affected by hormones. Age and overall physical condition play a role too.

It is very difficult to predict exactly how the disease will end up developing over time. Any prognoses (predictions) about chances of recovery, length of stable phases, or life expectancy are all fraught with uncertainty. Despite the seriousness of the diagnosis, there's good reason to hope to live as long as possible with a good quality of life. According to the Munich Tumor Registry, about 28 out of 100 women are still alive five years after they're diagnosed with metastatic breast cancer, and about 14 out of 100 are still alive after ten years.

Your doctor is the first person to go to if you think your breast cancer has progressed or come back again. They might refer you to a hospital or a specialized breast cancer center for further testing.

After thoroughly discussing your medical history, the doctor will do a physical examination. That may include a manual examination of the breast or the surgery scar, an ultrasound scan of the breast, or a tissue sample (biopsy).

If you have general symptoms or 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 do that:

• Chest x-ray
• Bone scan (bone scintigraphy)
• Computed tomography scan (CT scan)
• Ultrasound of the liver
• Magnetic resonance imaging scan (MRI scan)
• Positron emission tomography scan ( PET scan), also in combination with CT

You can talk to your doctor about which approach is best for you. You have the right to refuse to have an examination at any time.

Advanced tumors that are limited to the breast area or nearby tissue can usually be removed using surgery. If the tumor has spread to other parts of the body, it's usually no longer possible to completely remove the cancer tissue. 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) to limit tumor growth. This may involve treatment with hormones or chemotherapy. Some types of breast cancer can also be treated with what is known as targeted therapies. The drugs used in these therapies target cancer cells that have specific properties.

The choice of treatment will depend on where the individual metastases are in the body. Bone metastases, for example, 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. Treatment with medication is usually also an option.

The aim of treatment is to slow down the growth of the cancer and relieve the symptoms. Possible side effects of cancer treatment (like nausea, diarrhea or skin problems) can also be treated effectively. One common side effect is debilitating physical and mental exhaustion, known as fatigue. Cancer-related pain can be relieved with well-managed pain therapy.

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. But metastatic breast cancer can also be treated in hospitals or practices without special certification.

Treatment that aims to only relieve the symptoms and improve quality of life is referred to as “palliative treatment.” Palliative treatment, care and support can either be provided at home or in an inpatient facility.

Note: The information below describes the situation in Germany. Other countries will have different rules regulating the use and coverage of therapies and other offers.

In Germany, follow-up care that is started directly or up to 14 day after leaving the hospital is referred to as Anschlussheilbehandlung (AHB) or Anschlussrehabilitation (ARH). Sometimes people still need to have outpatient chemotherapy or radiotherapy after leaving the hospital. In that case, the follow-up treatment is started up to 14 days after that outpatient treatment has finished. Other kinds of oncological (tumor-related) rehabilitative care for breast cancer can be started later.

Rehabilitation treatment is offered in both outpatient and (partly) inpatient settings. Outpatient rehabilitation means that you can stay at home and only visit the practice or the hospital to have the rehabilitation treatment. The aim of rehabilitation is to ensure the success of the previous treatment, improve your physical and mental wellbeing, and to help you cope with the disease. Rehabilitation usually includes both sports therapy and physiotherapy, as well as psychosocial support. It also often includes information events, group discussions, advice on sexual and legal matters, and help with arranging care after rehabilitation and returning to work.

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

Rehabilitation programs usually last three weeks in Germany. A doctor has to prescribe them, and your insurer has to approve. The hospital’s support services department can help you to apply for rehabilitation treatment.

It is anything but easy to accept that you have metastatic breast cancer, deal with worries about the future and existential questions concerning life and death, and talk with relatives about it. Cancer treatment itself can also be very difficult to cope with, both physically and emotionally. So it's particularly important to look after your own wellbeing.

Many women say that actively facing and dealing with their disease has both really helped them and brought about personal change. After an initial period of feeling down, it was possible to slowly find new orientation, re-evaluate a lot of things, and often find themselves enriched through greater maturity and awareness. They try to live in the moment, get the most out of every day and enjoy life. Some women make big changes in their lives or 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 the diagnosis will keep changing too. There is no "best way" to do this: Everyone copes in different ways and will find their own individual path.

Many hospitals and information centers offer psychosocial and psycho-oncological support. In hospitals, psycho-oncological support is mainly provided by doctors and nurses. They may work together with psycho-oncological services (psychoonkologische Dienste). People who are at home or return home from the hospital can make use of outpatient psycho-oncological services offered by practices that are specialized in oncology or by psychosocial cancer information centers (psychosoziale Krebsberatungsstellen).

Relaxation classes, pain management therapy and courses to improve strength and endurance are often offered by rehabilitation hospitals, practice-based doctors and psychotherapists. In Germany, the costs are covered by statutory health insurers if you have a prescription from your doctor.

Support groups allow you to meet other women who have first-hand experience with the feelings and practical problems associated with breast cancer. Some groups are especially for women who have metastatic breast cancer. There you can discuss topics that are often difficult to speak about with people who don't have cancer or with women who have non-metastatic breast cancer. This can be a great help: Many women say that they draw strength from the solidarity they find in support groups and from the willingness of other members to help. These groups often have more to offer as well, including sports groups and help with legal issues.

In Germany, people are entitled to various services and types of 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.