Patients

Information for patients

A breast cancer diagnosis comes as a shock for most women. However, if detected in the early stages, breast cancer is usually curable today. 

When selecting the best therapy option, physicians follow the recommendations of a panel of experts. Breast cancer therapies are tailored to individual patient needs and adjusted repeatedly if necessary. 

 

In addition, clinical trials are conducted to test the latest treatment approaches and innovative drugs, with the aim of continuously improving breast cancer treatment. As a participant in a clinical trial, you will be very closely monitored. 

 

Is participating in a trial the right thing for me?
Clinical trials: WHY are they done and should I take part?
WHAT is a clinical trial?

The purpose of clinical trials is to test new treatments for effectiveness, safety and tolerability. 

 

WHY conduct clinical trials?

The aim of clinical trials is to find more effective therapies. 

 

WHAT does the GBG have to do with it?

The physicians working for the GBG study group develop new study concepts. The studies based on these concepts are then conducted by GBG Forschungs GmbH. 

Is participation in a study the right thing for ME?

Taking part in a study is a personal decision. Start by gathering all the information you need.

WHO can I turn to if I am interested in a study for my stage of cancer?

If you are interested in participating in a study, please contact your gynecologist or your breast center. 

WHAT else can I do for MYSELF?

Take care of yourself and your body. Exercise and a healthy diet can help. 

 

Clinical trials can be used to find out how well a drug works, how beneficial it is and how well it is tolerated by patients. The new active ingredient is usually compared with the current standard therapy. Whether a patient receives the new active ingredient under investigation or the standard therapy within the trial setting is decided on a random basis.  

 

Clinical trials are carried out by internationally recognized specialist physicians at dedicated breast cancer centers and hospitals. The latest types of treatment and active substances are tested in order to continuously improve the treatment of breast cancer patients. The aim is to develop increasingly individualized and effective therapies. 

In summary: Clinical trials are used to test the latest types of treatment and active substances in order to continuously improve the treatment of women with breast cancer. Patients who take part in a trial benefit from innovative treatment methods at an early stage. 

Clinical trials contribute to the advancement of breast cancer treatment. They help develop new, more effective, more individualized and safer treatments for women with breast cancer as well as identifying patients for whom certain treatments do not provide any additional benefit.  

The results of previous studies have led to a very wide range of treatment options now being available.  

Anyone taking part in a trial is therefore making an important contribution to advancing breast cancer treatment in general – especially for women who will be diagnosed with breast cancer in the future. 

In summary: Clinical trials help develop increasingly individualized and effective therapies for breast cancer patients. They drive scientific progress, thereby helping many women who will be diagnosed with breast cancer in the future. 

The GBG is made up of leading specialist physicians at German university hospitals. As a study group, they develop new study concepts that are then implemented by GBG Forschungs GmbH. For over 20 years, GBG Forschungs GmbH has been dedicated to continuously improving the treatment of breast cancer patients. GBG is the largest German breast cancer study group and conducts clinical trials at all stages of breast cancer. It can now draw on scientific experience from over 115 clinical trials and more than 67,000 participating patients. 

The studies conducted by GBG Forschungs GmbH are financed via public funds, foundations, donations and research-based pharmaceutical manufacturers. It is an independent academic breast cancer research institute. 

The GBG’s mission is “healing through innovation, competence and partnership”. 

In summary: The GBG is the largest breast cancer study group in Germany. It consists of internationally recognized specialist physicians from university hospitals. It has many years of experience and has been dedicated to the continuous improvement of breast cancer treatment for over 20 years. 

While one woman may prefer standard therapy, which involves fewer appointments and is easier to integrate in her everyday routine, another may be interested in the latest developments and prepared to take on the travel and organizational effort associated with studies. The latter option provides access to new treatments and procedures.  

Within a clinical trial, women with breast cancer have access to innovative treatment methods that are not (yet) available. It is possible that a new treatment method will achieve better results than the current standard therapy. However, it is also possible that the new treatment is less effective than the standard one.  

Clinical trials are performed by dedicated teams consisting of specialist physicians from the fields of gynecology, oncology, radiotherapy, pathology, anesthesiology and, if necessary, further disciplines. They are conducted in accordance with strictly controlled quality standards and guidelines. Regardless of the therapy, all participants are closely monitored, examined and cared for during the study. 

The German Agency for Quality in Medicine (Ärztliches Zentrum für Qualität in der Medizin- ÄZQ) has compiled some information for anyone considering participation in a study: https://www.patienten-information.de/kurzinformationen/klinische-studien 

In summary: There is more than one way of finding the best possible treatment: You can take part in a clinical trial or opt for the current standard therapy. 

 

 

If your diagnosis has been confirmed via all the necessary preliminary examinations or you have already been treated for breast cancer in the past and you wish to take part in a clinical trial, get in touch with your gynecologist first. He or she is best placed to assess your individual case.   

  

Your gynecologist can also help you find the right study for you.  

Current studies in which patients with early or later-stage disease can participate: Go to the studies 

Further links: 

www.clinicaltrials.gov 

https://euclinicaltrials.eu

www.clinicaltrialsregister.eu 

 

In summary: Take the next steps towards participating in a suitable study. 

You have already been able to gather some information and know what therapy you are going to receive, but want to do more for yourself, your health and your mental well-being? Below you will find a list of options that may help you in your current situation.  

As a general rule, any procedures you wish to undertake on your own initiative or on the advice of others should be discussed with your doctor beforehand. 

- Physical activity such as sport  

- Counseling from a psycho-oncology service at a breast cancer center  

- Mindfulness exercises such as MBSR  

- Meditation  

- Acupuncture  

- Yoga  

- Tai Chi/Qigong 

 

Concomitant complementary medical treatment is only recommended in the form of an individualized, multimodal concept (diet, exercise, complementary therapies) under the supervision of a physician. The aim is to improve your quality of life and alleviate possible pain.  

Irrespective of participation in a study, it is recommended that dietary supplements (with the exception of vitamin D) be avoided whenever possible.  

Further links: 

https://www.krebsinformationsdienst.de/tumorarten/brustkrebs/index.php  

https://www.leitlinienprogramm-onkologie.de/patientenleitlinien/brustkrebs/ 

https://www.patienten-information.de/kurzinformationen/brustkrebs-frueh 

https://www.patienten-information.de/kurzinformationen/brustkrebs-metastasiert

https://www.ago-online.de/fuer-patienten 

In summary:  In addition to participating in a study, there are other things you can do for yourself, ranging from exercise programs and nutrition to relaxation methods and psychological support. 

 

Q&A

With around 71,375 new cases every year, breast cancer is by far the most common cancer in women. Around one percent of all new cases affect men. 

Around one in eight women will develop breast cancer during the course of their lives. Almost three in ten are younger than 55 at the time of diagnosis. 

Breast cancer centers specialize in the treatment and care of people with breast cancer. They are usually based at a hospital and employ a multi-disciplinary team of specialists who plan and carry out treatment and care. The certification of breast cancer centers guarantees quality of treatment via regular inspections by external experts. 

Clinical trials are planned in accordance with international standards, and their quality is verified in advance by the competent higher authorities and ethics committees. Study team leaders with proven experience in the relevant field are responsible for ensuring that studies are conducted properly. 

  

In order to compare therapies, patients are usually randomly assigned to a treatment or control group. 

In oncology, the standard therapy is often compared with a new therapy. Where possible, patients are “blinded”, which means they do not know whether they will receive the new therapy or the standard one. In the case of “double-blinded” studies, their physicians do not know either. This practice ensures that the study results are not distorted by the expectations of the patient or the physician. Patients are closely monitored throughout the trial. Further information about clinical trials in oncology is available from the organization German Cancer Aid (Deutsche Krebshilfe). 

A breast cancer diagnosis during pregnancy is a very upsetting experience. Fortunately, the disease can usually be treated well even during pregnancy, without endangering the child.  

One patient has asked us to publish her personal story in order to support others in the same situation. 

17.12.2021 

When I was diagnosed with breast cancer, I was 32 years old and my sights were set on having a second child. It was seemingly by a stroke of fate that shortly after the diagnosis an egg implanted in my womb and I was able to give birth to a second healthy child nine months later. This account of my experiences is intended to offer hope and encouragement to women in a similar situation. 

It was a Friday when I found out during an ultrasound scan at the fertility center that an egg had implanted in my womb. I spent the whole weekend reading articles about breast cancer in pregnancy, mulling over the pros and cons, and ultimately hoping that I would be able to keep the pregnancy even though it had only just begun. On the Sunday, I finally wrote an email to my oncologist, whose reply was reassuring. He presented my case at the hospital’s tumor board meeting as well as seeking external expertise. 

The subsequent discussion with my oncologist allayed my own worst fears and those of my husband. Based on my tumor histology from the punch biopsy, we came to the joint conclusion that I would be able to keep the pregnancy. 

The breast-conserving operation was postponed until after the 12th week of pregnancy. This allowed us to wait and see whether the pregnancy would stabilize, which it eventually did.  

The breast-conserving operation took place in the 16th week of pregnancy. I felt confident about the operation as all the doctors assured me that they would take care to protect the pregnancy. The radioactive tracing, for example, was carried out on the day of the operation in order to reduce the radiation exposure. 

The histology of the surgically removed tumor, the oncotype test and the “black box” of pregnancy made chemotherapy an option that had to be considered. We ultimately decided in favor of chemotherapy. It was started in the 23rd week of pregnancy. Four cycles of EC were administered during the pregnancy. My oncologist said at the time that young women have fewer side-effects. Fortunately, this was also true in my case: no nausea and no vomiting. An ultrasound scan of our unborn child was also performed on treatment days. The pregnancy progressed normally. The nutrient supply via the placenta was always good. 

The fetal parameters were within the normal ranges. 

The birth of our child was finally induced in the 38th week of pregnancy so that the interval between EC and Taxol would not be too long. The ultrasound scans proved to be correct: Our daughter was born alive and kicking. 

I didn't breastfeed her because of the chemotherapy. But she instantly took to the baby formula and has been gaining weight well ever since. All the pediatric examinations show that she is a healthy child a strong, spirited little girl. 

After giving birth, I continued the chemotherapy with 12 cycles of Taxol and am now on the anti-hormone drug Tamoxifen. I’m glad that our little one came into the world at exactly the right time and that we have mastered the journey together. 

When I started chemotherapy, I joined a self-help group where I got to know other women who were pregnant at the time of their diagnosis and went on to give birth to healthy children. Talking to them was a great help to me. 

That weekend spent reading articles, researching other women’s experiences, and worrying about the pregnancy is indelibly imprinted on my mind, which is why I was particularly keen to record my own experiences. I want to offer you hope and encouragement. I always felt that I was in good hands with my oncologist, who had sought external expertise in addition to conferring with the hospital’s tumor board. I was thankful to be treated at an oncology center that was not out of its depth when faced with cases like mine and made it possible for oncologists, gynecologists and pediatricians to communicate directly with each other. I have already expressed my thanks in person, but I would nevertheless like to conclude this account with the following words: 

Thank you to all the doctors and nursing staff who looked after me!