The breast cancer screening program in Germany

If a woman decides not to have a mammogram for breast cancer screening, she will receive another letter after two years, again inviting her to have a mammogram – unless she specifically asks not to be sent any more letters. This will not affect her health insurance coverage: Should she get breast cancer at some point, her health insurer will of course cover the treatment costs.

There has to be a gap of at least 22 months between a previous mammogram for screening purposes and the next one. You can’t have this screening done if you’ve had a mammogram for other reasons in the last 12 months.

The examination will take place at a local mammogram facility. This could be in a practice, hospital, or sometimes even in a specially equipped vehicle.

The mammogram is carried out by a female radiographer. She will take two x-rays of each breast, from different angles. The breast is flattened between two plates. Although this can be uncomfortable or painful, it doesn’t harm the breast. The more the breast is flattened, the less x-ray radiation is needed, and the better the x-ray images will be.

The mammogram images are carefully interpreted within a few days. Two doctors look at them independently to see if they can find anything unusual. If they do, a third specialist will have a look at the images.

A letter with the results is usually sent within seven working days after the mammogram was done. Most women will have normal results (no signs of cancer).

Even experts can’t always tell for sure whether an area of abnormal tissue is benign (non-cancerous) or malignant (cancerous) based on the x-ray images alone. So further tests are needed.

The doctor will ask you to come back again to have further x-rays or ultrasound scans of the breast. This is often enough to rule out cancer.

If that is not possible, the doctor will probably suggest taking a sample of tissue (biopsy) from the breast. This is done under local anesthetic using a thin, hollow needle. The tissue is then examined under a microscope and a group of doctors discuss the findings. Women will usually receive their results within one week. In about half of all cases it turns out not to be breast cancer.

Being diagnosed with breast cancer is usually a shock at first. But the chances of recovery are often very good. This will mainly depend on how far the cancer has progressed.

Most women are advised to have surgery to remove the tumor and surrounding tissue or, in rarer cases, the whole breast (mastectomy). Other treatment options include radiotherapy, hormone therapy and chemotherapy. The most suitable type of treatment will depend on the exact diagnosis.

If 1,000 women have a mammogram in the coming week, the following outcomes will generally be expected:

• About 970 out of 1,000 women will have normal results. This means that a lot of women will feel relieved.
• About 30 out of 1,000 women will have abnormal results and be asked to return for further tests.
• In 24 out of the 30 women with abnormal results, further tests will reveal that they don’t have breast cancer. Being told that your mammogram results are abnormal is often frightening. Most women feel very distressed while waiting for the final results. Even if they find out they don‘t actually have cancer, the experience can leave a mark on them.
• In 6 out of the 30 women with abnormal results, further tests will confirm that they have breast cancer. The doctor at the mammogram facility will offer those women an appointment to discuss what to do next. It is, of course, also possible to make an appointment with your own gynecologist.

After the examination: About 2 out of 1,000 women will be diagnosed with breast cancer within the two years before they are invited to have the next mammogram. In most cases, that breast cancer will only have developed after the last mammogram was done. But mammograms can fail to detect tumors, despite the utmost care. That is rare, though.

These figures refer to the outcomes of one mammogram. Women who take part in the breast cancer screening program in Germany can have a total of up to ten free mammograms as part of the program. They could have abnormal results following any of these screening examinations.

About 5 out of 6 women who are diagnosed with breast cancer have an invasive tumor. Left untreated, this kind of tumor often spreads to other parts of the body.

About 1 out of 6 women who are diagnosed with breast cancer have changes in breast tissue referred to as a ductal carcinoma in situ (DCIS). This is where abnormal cells are found in the milk ducts. They are only found in the milk ducts and haven’t spread to other tissue. In some women DCIS remains harmless, in others it develops into an invasive tumor. Because nobody can predict whether DCIS will remain harmless, women are usually advised to have treatment.

Mammography screening sometimes leads to the diagnosis of breast cancer that would never have caused any problems. This can happen if the tumor is small and only grows very slowly, or doesn’t grow at all. Some women die of other causes before a tumor becomes noticeable. The diagnosis of these kinds of tumors is called overdiagnosis because they wouldn’t have caused any problems during the woman’s lifetime. But doctors can’t know for sure whether a tumor will continue to grow, so they usually recommend treatment.

This means that overdiagnosis leads to unnecessary surgery or radiotherapy. People often think that overdiagnosis is what happens when abnormal findings are seen in a mammogram image but further tests show that these are harmless. This is not what is meant by overdiagnosis, though. All screening tests can result in overdiagnosis.

A number of studies have looked into what women can expect in the long term if they regularly have mammograms as part of a breast cancer screening program. Based on these studies, the likelihood of key benefits and drawbacks can be estimated.

One main advantage: better chances of full recovery. Mammograms can detect breast cancer at an early stage. This lowers the risk of dying from breast cancer.

One main disadvantage: the risk of overdiagnosis. Mammograms can lead to unnecessary breast cancer diagnoses which in turn can result in unnecessary treatments such as surgery and radiotherapy.

The table and illustration below summarize the chances of recovery women can generally expect if they participate in a breast cancer screening program and regularly have mammograms over a time period of about 20 years.

The table and illustration below summarize the risk of overdiagnosis if women participate in a breast cancer screening program and regularly have mammograms over a time period of about 20 years.

Mammograms involve the use of x-ray radiation. The more dense the breast tissue is, the more radiation has to be used to get a good image. Even then, the level of radiation used is so low that it normally doesn't have any harmful effects. But there’s still a small chance that regular mammogram x-rays over a period of about 20 years could contribute to the development of breast cancer in up to 1 out of 1,000 women.

Some women are offered other examinations to screen for breast cancer, such as ultrasounds or magnetic resonance imaging (MRI). But it isn’t clear whether these approaches lower the risk of dying of breast cancer, like mammograms do. Compared to mammograms, these screening examinations are more likely to lead to overdiagnosis and abnormal findings that turn out to be harmless.

If mammograms are used for screening purposes in Germany, this can only be done as part of the national screening program, which meets strict quality assurance requirements. Mammograms can be done independently of the national screening program, but only for other purposes – for instance, to take a closer look at breast changes that were discovered in another way. These mammograms don’t have to meet the same quality assurance requirements. For instance, the mammogram images don’t have to be assessed by two specialized doctors.

Having regular mammograms cannot prevent breast cancer. But it is meant to detect cancer early enough.

Mammograms can’t discover all tumors. Some develop a few months after a mammogram is done.

So it is still important to seek immediate medical advice if you notice changes in your breasts before the next mammogram is due. Changes to look out for include the following:

• Lumps, dimples or hard areas of skin that you can feel.
• Visible changes in the shape of the breast, changes in the skin, or nipple retraction (turning inward).
• Bleeding from the nipple or other kinds of nipple discharge.

Women have different views about the pros and cons of breast cancer screening. Some want to have screening because they consider it to have more benefits, whereas others decide not to because they see more drawbacks.

The invitation to have a mammogram comes with a German leaflet called "Mammography screening – a decision aid." At the end of this leaflet, there’s a table summarizing the key points about breast cancer screening. If you like, you can use it to weigh the pros and cons of participating – or to find out what isn’t at all important to you. You can use the table when talking to your doctor, too. The German decision aid can be downloaded from the website of the Federal Joint Committee (G-BA).

The handling of personal data is subject to the German data protection act. All data related to the breast cancer screening program in Germany is treated just as confidentially as data gathered in a normal doctor's practice. Doctors and all of their staff are also required to handle the data confidentially.

The mammogram findings are analyzed at a central location on a regular basis. This is an important part of monitoring the quality of the screening program. Personal data such as names and addresses aren’t needed for these analyses, and they aren’t passed on to others. So the central analyses don’t provide any information that can be linked to individual women.

The same regional mammography program centers (“Zentrale Stellen”) that send women letters inviting them to have a mammogram are responsible for handling their personal data.