Åsa chose to remove her healthy breasts

"Every year when I watch the Breast Cancer Gala on TV, I feel satisfied with my decision." So says Åsa Fagerström, who chose to remove her healthy breasts due to an increased hereditary risk of breast cancer. Research carried out at Karolinska Institutet shows that most women who choose to undergo the surgery are satisfied with their decision and experience less anxiety afterwards.

Åsa Fagerström
Åsa Fagerström, credit: Ylva Sundgren.

Text: Cecilia Odlind, first published in Swedish the magazine "Medicinsk Vetenskap", no 2, 2010

Åsa Fagerström was recommended to remove her healthy breasts when she was 32, in order to reduce the risk of being affected by breast cancer. Her brother had recently died from thyroid cancer, her mother was sick with myeloma (a form of cancer that affects the bone marrow), and several of her aunts had died or were suffering from breast cancer or cancer of the uterus.

"It was easy for me to accept the recommendation," she says, "particularly when I consider my two sons."

Certain families are hit hard by cancer since they carry either known or unknown genes that increase the risk of being affected. Women who run a severely increased hereditary risk of being affected by breast cancer can be offered prophylactic mastectomy, in which both breasts and breast tissue from the collar bone region and down under the breasts is removed. The surgery reduces the risk of being affected by breast cancer from approximately 40% (or higher) to approximately 4%. This is significantly lower than the risk for a woman in the general population, which is approximately 12%.

Felt convinced

It is still unclear in Åsa Fagerström's case which gene causes the increase in the incidence in cancer in her family, and it is not just breast cancer and uterine cancer that have been prevalent. But as soon as she was offered the opportunity, she felt convinced that she wanted to undergo the surgery. It took a whole year, however, from the first contact until the operation was performed.

"The healthcare system gave me a year to think things through, and this was really useful", says Åsa Fagerström.

The idea is that the decision should be given time to mature. The procedure for Åsa Fagerström was the same for all other patients in her situation. She met genetic specialists during the period of consideration, in order to discuss the actual risk of being affected by cancer, and – where possible – to determine whether she was a carrier of a risk-associated gene or not. Women who choose to continue meet surgeons and reconstructive surgeons to discuss the surgery and what the result will look like, and they meet a psychologist to discuss the emotions that the decision may arouse.

Portrait of Yvonne Brandberg
Yvonne Brandberg, credit: Andreas Andersson.

"It's important to really consider all aspects of the whole situation, to avoid regretting the decision later", says psychologist Yvonne Brandberg, professor at the Department of Oncology-Pathology at Karolinska Institutet. "In cases of women where the genetic cause of the family history is not known, for example, future research may reveal the exact gene. It may then turn out that the women are not carriers of the gene that has caused the disease in the family, and they may then feel that they had the preventative surgery 'unnecessarily'. It is important to have thought about this and discussed it beforehand, even though most people decide in the end to undergo the surgery, anyway."

Choosing to remove healthy breasts as a preventative measure is not an obvious choice for everyone. Some fear the pain associated with the surgery, others fear the loss of their breasts. Some people decide that there are so many risks in life anyway, and "you can't protect yourself from everything." But many people do in the end decide that they want to remove their breasts in order to minimise risk. Often, they have lost loved ones to cancer, and this has led them to consider deeply their own level of risk. Some have already developed a feeling of separation from their breasts.

"Some people experience their breasts as time-bombs, ready at any moment to develop the disease. In this case, it feels fully natural to choose to remove them", says Yvonne Brandberg.

Not the nervous type

Åsa Fagerström herself claims that she is not the nervous type, but she is convinced that she took the right decision six years ago. She soon became accustomed to her new breasts – salt-water implants under the skin, with attractive nipples constructed outside – but feeling in them has remained partially impaired. The loss of her breasts, however, required a process of mourning.

"I would suddenly experience strong emotions in the period after the surgery, and could burst into copious tears. I felt that I had not appreciated my breasts sufficiently when I had them", she says. Yvonne Brandberg's research has shown that most women who undergo mastectomy are in general very satisfied with their decision, as Åsa Fagerström is.

"The worry and anxiety experienced by patients is lower after the surgery. I was myself surprised at the low level of mental health issues after the procedure. But it must be remembered that it is a certain type of person who chooses to undergo the surgery: these are women whose life is otherwise stable, and they often have strong support from the people around them", she says.

Yvonne Brandberg has seen, however, that body image can be affected negatively by the procedure, and that interest in sex can decline. She is now collaborating with a physiotherapist in a study investigating whether physiotherapy can reduce the negative effects on body image and sexuality. Half of the patients meet a physiotherapist after the surgery in order to work through their relationship with their own body, using, for example, massage and mirror-based exercises. The other patients receive conventional follow up based on questionnaires.

A positive experience

Åsa Fagerström emphasises that the change, which may frighten some women and deter them from having the surgery, has actually been a positive experience.

"I am really happy that I did it, and I really love my new, attractive breasts", she says.

She rarely thinks about the risk of cancer now, but often feels gratitude. She took time off from work during the last six months of her brother's life, and spent one day a week with him. They talked a lot about his disease, and how it feels to wake up every day knowing that you are going to die soon.

"The time I spent with my brother, and later with my mother who died in 2006, has made me very conscious that you can't take life for granted. My life and my day-to-day activities are pretty much like everyone else's, but I carry with me all the time a feeling of gratitude that I am alive", concludes Åsa Fagerström.