Female cancer survivors who do not receive counseling about options for fertility preservation prior to their cancer treatment commonly have long-term regret and a reduced satisfaction of life, compared with those who do receive the counseling or fertility preservation, according to a study presented here at the American Society for Reproductive Medicine (ASRM) 66th Annual Meeting.
Of 918 female survey respondents undergoing cancer treatment with the potential to adversely affect fertility, such as systemic chemotherapy and/or radiation to the abdomen or pelvis, those who were not counseled on fertility preservation by an oncology team, who did not visit a fertility specialist, or who did not undergo fertility preservation reported significantly higher levels of regret and lower satisfaction of life than those who did receive the counseling or referral.
According to Mitchell Rosen, MD, director of the Fertility Preservation Program at the University of California at San Francisco, and a coauthor of the study, the survey was part of an effort to gauge the psychosocial impact of fertility preservation on female cancer survivors and the impact on patients who are not adequately informed about their choices prior to their cancer treatment.
“Some patients have described” feelings of being happy to have survived their cancer, yet have significant regret about not undergoing fertility preservation and not being satisfied with their oncology doctors” regard for the quality of their life after survival,” said Dr. Rosen.
The survey involved women in the California Cancer Registry who were between the ages of 18 and 40 years and diagnosed between 1993 and 2007. The women had been treated for leukemia, Hodgkin’s disease, non-Hodgkin lymphoma, breast cancer, and gastrointestinal cancers.
Women were asked to rate the precancer treatment counseling they received and decisions made about fertility preservation on a Decision Regret Scale and a Satisfaction With Life Scale.
Among the 499 women who had been counseled on fertility preservation by an oncology team, the level of regret, on a scale of 5 (least regret) to 25 (most regret), was 10.8 (±5.0), compared with 12.6 (±5.4) among the 278 women who had not been counseled (P < .001).
The 42 women who had visited a fertility preservation facility had a regret level of 8.5 (±5.2), compared with a level of 11.6 (±4.5) among the 726 who had not (P < .001).
The 31 women who had undergone fertility preservation had a decision regret level of 6.5 (±3.1), compared with 11.6 (±5.2) among the 736 who had not (P < .001).
Satisfaction With Life scores, on a scale of 5 (lowest) to 35 (highest), among the 31 who had undergone fertility preservation was 23.4 (±9.4), and among the 736 who had not, was 19.9 (±9) (P < .05).
“The results indicate that if patients have a role in this decision, their quality of life is different than if a passive decision was made for them by the oncologist. If they preserved their fertility, their quality of life is higher and levels of regret are lower,” Dr. Rosen said.
Using data from the same survey, the researchers analyzed self-reported rates of impaired fertility among cancer survivors, and found that approximately half of those who had been treated for Hodgkin’s disease or non-Hodgkin’s lymphoma experienced impaired fertility or early menopause.
Among 168 respondents who had been treated for Hodgkin’s disease, 49% who received chemotherapy only or chemotherapy plus radiation reported impaired fertility or early menopause; among 49 respondents treated for non-Hodgkin’s lymphoma, 54% reported impaired fertility and/or early menopause.
“We found that even women who continue to have regular menstrual cycles while being exposed to chemotherapy therapy have a much higher incidence of infertility,” Dr. Rosen said.
Recent research indicates that about 70% of oncologists discuss reproductive loss with their patients, but less than 25% refer patients to a fertility specialist (2009 American Society of Clinical Oncology annual meeting: abstract CRA9508).
According to another study presented by Dr. Rosen and colleagues here at ASRM, fertility preservation referrals are on the rise, with rates increasing continually from 2000 to 2009, but Dr. Rosen said greater awareness is still needed.
“These oncologists should be talking to patients as part of their care as a whole with respect to the fact that their fertility may be compromised,” he said. “Patients should be given the opportunity to see a reproductive endocrinologist so they can make an active decision on whether they want to preserve their fertility or not.”
“Back in the 1980s and 1990s, the focus was just on saving patients; now, with survival rates significantly improving, we need to think about the patient as a whole and the quality of life they have thereafter.”
Dorothy A. Greenfeld, LCSW, clinical professor in the Department of Obstetrics and Gynecology at the Yale University School of Medicine, director of psychological services at the Yale Fertility Center, in New Haven, Connecticut, and moderator of the session, agreed that oncologists should play a more active role in informing patients about fertility preservation options, but improvements are being made.
Factors that can deter a referral run the gamut from a lack of insurance coverage for treatments to the timing of cancer treatments, she said.
“Insurance coverage may be a consideration for oncologists, but I think more often it is the case that they themselves are either not aware of options for fertility preservation, or such options are not available in their area.”
“Also, I think it is often a case of timing, where there is a critical time period in which cancer treatment needs to begin, and the thought is that some treatments for fertility preservation may be too time consuming.”
Ms. Greenfeld noted that, even when referred for fertility preservation, patients don”t always choose the option for a variety of reasons, but the referral is still important.
“The bottom line is that whether or not patients can or will choose fertility preservation, they should certainly be informed about the possibility. And of course they should be informed that the loss of fertility does not necessarily mean the loss of a chance for parenthood,” but that’s the subject of another study, Ms. Greenfeld said.0