Dealing with the risk of breast cancer
Women with genetic predispositions to cancer face the challenge of becoming a permanent patient without even being ill, according to the sociologist Maria Caiata Zufferey. By Fleur Daugey
Horizons: For the last 15 years it has been possible to test for the presence of a genetic mutation which leads to ovarian and breast cancers. What happens to women who have this gene? Maria Caiata Zufferey: For the general population, the risk of developing breast cancer before reaching 70 years old is 10%. For women who have mutated BRCA1/BRCA2 genes, the risk rises to 45 to 85%. When women are told that they are at risk, we also give them some recommendations: undergo screenings every six months as of 25 years old, remove the ovaries ideally before 40 and, on a case-by-case basis, optionally ablate the breasts, i.e., undertake a mastectomy. Of course, the final decision lies always with the patient herself. Self-determination is a key principle in this area. H: These women, otherwise in good health, find themselves under the sword of Damocles and stuck with the obligation of making decisions that involve major surgery. MCZ: Yes, that is why I chose to study how women behave when faced with such uncertainty. How do they handle it when managing the risk of illness on a day-to-day basis and over the long term? I gathered the life stories of 32 women in French-speaking Switzerland and the canton of Ticino aged 26 to 60 years old, who had known about their condition for at least three years. These women had decided to take the genetic mutation test following the illness or death of a relative – a mother or a grandmother, for example. H: How do they take this news? MCZ: They experience an enormous sense of responsibility towards their ancestors. They feel privileged to have had access to this information. And they feel indebted to the women in their family who have had cancer and who did not have the chance to prevent it. They all want to use the information in the best way, and they also feel responsible towards their partners and their children. Those who have daughters also emphasise giving hope to their children and setting them a good example too. H: Your results show that, despite this medical path being well trodden, patients are often disappointed in the relationships they have with their doctors. MCZ: The Swiss medical profession still has to adapt to the specific status of people with genetic risks. Preventative medicine is a new idea that still lacks consensus. Female patients consult a number of different practitioners – doctors, gynaecologists, radiologists – who struggle to communicate with each other and who often offer contrary opinions. Sometimes, when an operation is being considered, there are surgeons involved too. It seems that increased awareness of this new kind of patient amongst doctors is important but will only come with time. We mustn’t forget that this type of test is still new. H: What kind of things are these women told by their doctors? MCZ: We see three different ways in which patients are assisted with their choice. One of the women that I interviewed told me that she thought her gynaecologist didn’t "go deep enough". She wanted an expert opinion to be able to make the right decision, but he refused: "I give you the information, you use it", was his answer. Other doctors adopt the opposite attitude and completely deprive the patient of her freedom of choice. It reminds me of one 60-year-old woman who had yet to undergo the ablation of her ovaries because her gynaecologist thought that regular monitoring would be enough. This is completely against all recommendations. Finally there is the approach that I find most to the point. This is really a joint project in which the patient and her doctor work together on the decision. After consulting her, the doctor gives his or her logical opinion based on the patient’s profile, which is always unique. The doctor can then say: "on the basis of the medical information in our possession and of your own personal situation, the way forward that to me seems most appropriate is as follows". This kind of help in the decision-making process is essential. H: Does this type of relationship with doctors improve the chance of the decision being correct? MCZ: I think so. We make the right decision so long as we correctly justify it. This makes the decision a personal one and avoids later regret. It’s therefore necessary to support the choice with arguments, to make sense of it in one’s own eyes and in the eyes of others. This is not something a woman can do alone. She needs the appropriate support. Expert medical advice is essential to ensure she takes into account not only the scope of the risk being taken but also the possibilities open to her. Here too the relationships with her partner and her relatives are significant. What is missing today is the opportunity for women to share their experiences with others in similar situations. Creating support groups and online communities seems key to reducing the feeling of isolation. There is a demand for this kind of help. H: What kind of dilemmas do these women have to resolve? MCZ: Women between 35 and 45 years old face the most difficult decisions, because often they have yet to fulfil all of their maternity goals or they are not in a stable relationship. I’m reminded of a 40-year-old woman, divorced with two children. She wanted to carry out a mastectomy, but it went against her desire to find a new man in her life. She found it impossible to enter into a new relationship after having undergone what she saw as a mutilation. This type of internal conflict can push certain women into ignoring medical recommendations. Around half of the women that I interviewed followed recommendations, but others allowed the deadlines to pass them by, whereas others did things much earlier. I saw two cases in which 33-year-old women, who both already had children, insisted on having their ovaries removed. They saw their situation as being very bad and preferred to undergo the consequences of an early menopause. H: Do some women start to see their organs as enemies? MCZ: Absolutely. The sample I took is not representative of the general population, but I was still surprised to note that more than half of the women had undergone a mastectomy or foresaw doing one in the short term. Those who had were satisfied, despite the psychological and physical difficulties caused by the operation. One of the women said she had "turned her body into a construction site for several months". Often women do not consider surgery at the beginning but change their minds as time goes by. When they undergo a mammography, the radiologist may see something strange but without being able to identify it with certainty. Such a situation entails undergoing a biopsy, and the wait for results provokes anxiety. Their breasts become more and more threatening. Little by little, they experience a symbolic separation from this part of their bodies, up to the point that they request the operation and say, "take these off"!
H: What is it like to be a person at risk who is not ill? MCZ: It’s complicated. There is the advantage of being able to receive treatment, but it can be uncomfortable. Here too, the medical profession has yet to find an appropriate response. For example, there was a case of a woman who had stopped mammography whilst she was pregnant and nursing. That meant a two-year interruption in screenings. When she wanted to start them back up, the secretary said there would be a six-month wait, arguing that the woman was still young and that she didn’t have cancer. They often have to wait in line behind those who are ill. At the same time, their doctors and their relatives ask them to do all they can not to become ill. This is what makes the situation uncomfortable. H: Where will you take your research now? MCZ: It would be interesting to study the experiences of doctors. They are not in a comfortable situation. Their patients throw numerous questions at them related to death, sexuality and feminine and maternal identity. These are complex topics that go beyond the body itself. I would also be interested in listening to what partners have to say. How do they help their partner face uncertainty? (From "Horizons" no. 103, December 2014)