„Prophylactic Mastectomy, that is the surgical removal of the breasts, reduces the risk of developing breast crancer virtually to zero“, explains Rita Schmutzler, professor and head of the Family Breast- and Ovarian Cancer Centre of the Universities of Cologne and Bonn, Germany. That means that carriers of the known breast cancer genes have an option on how to finish with the issue breast cancer once and for all. However, depending upon the country they live in affected women make different use of this drastic option: In the Netherlands, one third of the women decide for an amputation, whereas in Germany only about five to ten percent choose the mastectomy which corresponds to Austrian figures.
Why such a difference? The reason: Even though there are several possibilities for prevention, there exists no ideal solution yet. With mastectomy – the medically most effective solution - many psychological reasons interfere. „The thought of removing a breast is scary. The women fear a changed sexual life or not to be attractive for their partner any more“, says Renate Lichtenschopf, psychologist at the psycho-oncological ambulance of the Gynaecological University Hospital of Vienna. A woman feeling uncomfortable with her own body after an amputation might have worse experiences than having to fear the illness. Since about 15 percent of women with BRCA 1 or 2 mutations never fall ill, many of the women hope that she belongs to those who are lucky, according to Lichtenschopf.
Lower quality of life versus greater risk
Thus, the majority of German patients opts for an intensive early stage diagnosis. This would not necessarily be the physicians’ first choice since women deciding to undertake mammography, magnetic resonance imaging, sonography and palpatation at regular intervals will in all likelihood experience tumour growth.
Furthermore it has not yet been determined if early stage diagnosis for these women works: „It is still sure whether the intensive surveillance is sufficient for high risk patients. We do it this way because we think that it improves the chances on survival. However, we must still wait for exact figures“, says the human geneticist Dr. Astrid Bechtold who carries out the first consultations in the Family Breast Cancer Centre in Würzburg. „Physicians must explain their patients very clearly that it is definitely dangerous to risk an outbreak.“ Patients have no guarantee if the cancer can be discovered early enough or if it is missed until the tumour has already formed metastases.
Since most women cannot adapt to the thought of a mastectomy and since early stage diagnosis itself is possibly not sufficient, many women try to strike the balance between the two options: ovarian removal or oophorectomy. Through this ovarian cancer can be avoided - all BRCA 1 and 2 carriers have an increased risk of approximately 40 percent. „Ovarian cancer is especially hard to control, because the ovaries in the body cannot be screened like the breasts: hence, an early diagnosis is much more difficult“, explains the gynecologist Schmutzler. At the same time, however, the ovarian removal, if it is carried out before menopause, halves breast cancer risk.
Ovarian removal as a compromise
Since nobody can notice if ovaries have been removed or not, it is easier for the women to accept such surgery. Therefore, German physicians recommend this option as a compromise between medical advisability and physical well-being. Again, figures vary from country to country: around 50 percent of the German women undergo this procedure, in Austria only around 22 percent. This may be due to the consequences that also limit quality of life: women are sterile, breast cancer risk still is close to 40 percent which means the women still have to fear cancer. Additionally, since ovarian hormones are lacking menopausal symptoms occur earlier than usual. Menopausal symptoms, in turn, can hardly be treated with a hormone replacement therapy which may raise breast cancer risk again.
As a consequence, women having to decide on the right treatment oscillate between the fear of cancer, self-image and body perception, individual disposition to carry a risk and family planning. „Firstly, the consultation focuses on rational arguments, then the personal emotions of the woman need to be considered“, explains Lichtenschopf. Often, the willingness to live with the risk is influenced by personal experiences: many women have experienced at a young age how mother, sisters or aunts got breast cancer or they may already have children and want to make sure to be with them for a time as long as possible. These women rather opt for an operation.
Since a perfect solution does not exist regarding prevention for high risk women decisions are influenced by social and cultural differences between countries. A study from 2008 argues that women images may differ between cultures and this may lead to varying decisions on prevention strategies. Insurance systems also differ and may influence treatment as well as the type of physician’s consultation - a more controlled than open or less informative – may be of importance.
In the end, it’s up to the high-risk patients themselves. They must decide between existing options of which each one is rather a compromise than a solution which basically means that, after all, personal feelings tip the scales.