If Hollywood influences the Charité…

Within the framework of her BIH Clinical Fellowship, Dorothee Speiser has developed and conducted an advanced training module on family-related breast and ovarian cancer. Here on FACES, she explains exactly what it’s about and what led to the project:

“In 2013, Angelina Jolie went public about her BRCA mutation. This is a genetic mutation which increases the risk of contracting certain types of cancer. Her public declaration massively increased public awareness of breast and ovarian cancer and the need for appropriate medical advice has dramatically increased. Nowadays, one even speaks of the “Jolie effect”. Here at the Charité, we also recorded a marked increase in our case numbers. At that time, we initially assumed that all the additional women who came to us were suffering from needless anxiety – which, however, proved to be a false assumption. In retrospect, I would estimate that 95 per cent of those women were and are absolutely right. Against that background, we asked ourselves the question as to how many of the cancer-history families had already been given any advice at all. Even taking the Jolie effect into account, we haven’t reached all the women who are at risk, even though that is our aim. Our advisory service is subject to the German Genetic Diagnostics Act, which places decisive importance on “the right not to know”. We rigorously adhere to that standard and accordingly only advise families who expressly wish it.

That’s the background to why I want to make the issue of “breast and ovarian cancer” more comprehensible for gynecologists from various breast and gynecology centers. In Germany, there is a consortium for family-related breast and ovarian cancer with 18 university-based centers. These centers have taken on the task of advising, genetically testing, if need be operating on women who either already have cancer or in whose families many cases of cancer have occurred and including them in early diagnosis programs. Up to now, this range of services was mainly limited to these 18 locations. However, as the issue became ever more ubiquitous, more and more women, and now men too, are needing access to these measures. We’re therefore trying to enhance trans-sectoral care and to expand the program beyond the university centers to include other hospitals. For the women concerned, this has the great advantage that they can obtain information and have themselves genetically tested close to home. Up to now, the Charité has had to cover the whole of Brandenburg and Mecklenburg-Western Pomerania. Not having to drive all the way to Berlin from the surrounding areas removes obstacles and also makes it easier to utilize our advisory service and measures.

Which is why I’ve developed a curriculum for advanced trainings as part of my funded project at the Charité, at the end of which the gynecologists are in a better position to provide initial information and to carry out genetic tests for women with cancer. Diagnostics have markedly improved particularly in the genetic area, so that we can tell in advance who has a greater risk of getting cancer. The earlier one recognizes an increased risk, the better – not just for the patient themselves, but also as a decisive step for relatives. The knowledge that the gynecologists need for this is taught during their studies and is also touched on as part of the specialist examination. However, many colleagues can no longer spontaneously recall that knowledge and are no longer at the cutting edge of science.