Many Breast Cancer Survivors Experience Decisional Regret About Fertility

H. Irene Su, MD, MSCE

H. Irene Su, MD, MSCE

Long-term data are lacking on how younger women feel about the decisions they made regarding fertility preservation prior to embarking on treatment for their breast cancer. Findings from a study presented at the 2017 Cancer Survivorship Symposium suggest that many of these women experience decisional regret about their choices, and that regret continues long after their initial diagnosis.

“The goal of this study was to ask, ‘What happens to feelings about that decision over time?’” explained study author H. Irene Su, MD, MSCE, associate professor of reproductive medicine at the University of California, San Diego School of Medicine.

“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 at UC San Diego studied 169 young breast cancer survivors aged <45 years from 3 academic breast cancer programs. The women were recruited after diagnosis of stage I-III cancer between 2009 and 2012, and followed for ovarian function over 5 years.

During study visits every 6 months, the women were given questionnaires to complete on fertility preservation choices worry about future fertility that included the Decisional Regret Scale, which measures distress or remorse on a 0 (no regret) to 100 (highest regret).

Decisional Regret Scale data were available for 89 of the women. Of those, 48% reported decisional regret about fertility preservation and 52% were worried about future fertility. Thirty-one percent of the respondents had undergone fertility preservation, however, this was not associated with decisional regret, the authors reported.

“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 healthcare 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 [desirable] 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?”

Dewald SR, Natarajan L, Su I. Fertility preservation and decisional regret in young breast cancer survivors: a longitudinal analysis. J Clin Oncol. 2017;35(suppl 5S; abstr 106).