Fertility Preservation and Decisional Regret: How Do Young Breast Cancer Survivors Feel Over Time?

When faced with breast cancer treatment, patients must make fertility preservation decisions ahead of treatment. But how do they feel about their decisions over time?
BY Katie Kosko
PUBLISHED March 03, 2017
Many young breast cancer survivors are faced with making fertility preservation decisions before being treated for cancer, as treatment for breast cancer increases the risk of infertility.

Researchers from the Moores Cancer Center at the University of California San Diego (UC San Diego), examined if fertility concerns and fertility preservation treatment decisions are related to decisional regret. They presented their findings at the 2017 Cancer Survivorship Symposium.

“The goal of this study was to ask, ‘What happens to feelings about that decision over time?’” H. Irene Su, M.D., MSCE, associate professor of reproductive medicine at UC San Diego and author on the study, said in an interview with CURE.

“We were able to follow a smaller group of patients with breast cancer and found that nearly half of women will feel regret about their decision on fertility preservation and that the regret really persists over time. We also found that half of our participants worried about their future fertility.”

Su and her team studied 169 young breast cancer survivors from three academic breast cancer programs, who were all under age 45. The women were recruited at diagnosis between 2009 and 2012, and followed for ovarian function over five years. Patients had stage 1, 2 or 3 cancer, and received either standard chemotherapy or tamoxifen.

The women were given questionnaires to complete on fertility preservation choices, worry about future fertility and the Decisional Regret Scale — a scale that measures distress or remorse after a health care decision through a series of questions — during study visits every six months. The Decisional Regret Scale is scored zero (no regret) to 100 (highest regret).

Decisional Regret Scale data were available for 89 of the women. Of those, 48 percent reported decisional regret about fertility preservation and 52 percent were worried about future fertility. Thirty-one percent had undergone fertility preservation.

“It turns out, in this group, regardless of whether you had fertility preservation or not, you still feel regret,” Su said. “I can see it both ways: the idea that you didn’t do it, now you regret it; or, that you did it, and perhaps, for reasons we didn’t ask, such as never needing to use your banked oocytes or embryos, you might regret that decision, too.”

Su added that it is important for patients to ask their health care providers questions like: What do you know about whether my cancer treatment will affect my ability to have children later? How does treatment for cancer affect my eggs? How will treatment potentially impact my health during pregnancy?

For women experiencing regret after treatment, Su said it may be best to seek medical advice from their oncologists and reproductive specialists about potentially starting their families and the best way to safely do that. She said it also helps to get peer support.

“We’re making strides in talking about fertility preservation at diagnosis, but actually this conversation should be happening into survivorship,” said Su. “It would be cool to consider the idea of a ‘productive window’; despite knowing that it is narrower after treatment, can survivors consider fertility preservation if they didn’t seek it before treatment?”
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