Women's experiences of surveillance with magnetic resonance imaging of breasts in a context of hereditary risk of breast cancer

The overall aim of the research project is to investigate women’s experiences of the programme of annual surveillance with MRI of the breasts in the context of a hereditary risk of BC in Sweden.
Specific aims and methods of the project:
1. To explore women's perceptions of surveillance with MRI. Phenomenography. Paper I, published.
2. To explore the meaning of lived experiences of women when participating in the surveillance programme. Hermeneutic phenomenology. Paper II submitted manuscript.
3. To investigate health-related quality of life, psychosocial consequences and anxiety when participating in the programme. An observational prospective follow-up study, ongoing. Paper III.
4. To investigate adherence to surveillance among women versus the choice of mastectomy. A register study, ongoing. Paper IV.

Imagine you are carrying a gene that increases your risk of getting breast cancer with up to 80%. For many years you will have to participate in a breast screening program with magnetic resonance imaging (MRI), mammography, and ultrasound. This is the reality for thousands of women in Sweden with inherited risk of breast cancer. Having hereditary risk for breast cancer, you could either take part in these surveillance programmes or have your breasts surgically remove.
What thoughts go through your head lying on your stomach in that gigantic machine making loud noises, maybe dealing with claustrophobia and thoughts on the outcome?
Research on the benefit of screening and the utility of MRI have largely been explored but very little research on the psychological impact on these women have been charted.
As a radiographer I have meet these women in the MRI department for years and now, together with a research group, a team of nurses, radiologists, and clinical genetics, have started a project to investigate these variables. As a first step we interviewed a group of women on perceptions and experiences of yearly surveillance with MRI. This has never been done in Sweden before and very few studies in the field have been published around the world. As a radiographer I need to know what experiences these women have when they come to our department but the knowledge on experiences from the women is also important in other healthcare domains meeting them. As the rules and laws in Swedish healthcare is working towards person-centered care, it is of great importance that stories and telling’s from a person’s perspective are being brought to us.
The next step in our project is to look broader. How does women around Sweden experience being part of a surveillance programme? We have sent out questionnaires to six sites in Sweden and will look on these women’s health related quality of life, anxiety and trust in healthcare. Further we are collaborating with another research team in a register study on which women stay in surveillance and which who opt. out for surgically removing their breasts. Together, all parts of the project can result in a broad understanding about this group of women. Hopefully this can impact many things, from the guidelines to the very close care of this group and further research.