Engaging in conversations about fertility
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“Everyone should have kids. They are the greatest joy in the world.”
– Ray Romano
Among the new jargon that has found its way into our daily professional lives, “oncofertility” is one of the words I like the least.
In part, I dislike the term because I think it desensitizes us to how devastating infertility can be to those cancer survivors who were treated in childhood or as young adults.
Having just welcomed a grandson into the world, my family is experiencing the excitement, happiness and anticipation for the future that accompanies a new arrival — emotions that can easily be taken for granted.
For many cancer survivors, the path to parenthood can be long, complicated, and full of uncertainty and possible heartbreak.
Evolving options
Having been involved in the care of young adults with Hodgkin lymphoma for most of my career in oncology, it has been remarkable to see how treatment strategies have changed to reduce the risk for infertility.
Recognizing the high potential for infertility associated with pelvic radiation and the use of alkylating agent-based chemotherapy regimens, radiation has been largely omitted from Hodgkin lymphoma therapy, and alkylating agents are mostly avoided in first-line treatment. These strategies alone have allowed many more Hodgkin lymphoma survivors to have children.
For young men with cancer, the commonest approach has been, and still is, semen cryopreservation. Other techniques remain experimental.
For young women, an expanding set of options to preserve fertility exists. This has become a highly specialized area to the extent that professional bodies, including ASCO, have produced fertility preservation guidelines, the latest of which were updated last year. These guidelines list multiple strategies for fertility preservation among girls and young women with cancer, some of which do not require sexual maturity and, contrary to what many of us may think, do not require lengthy treatment delays for ovarian stimulation.
As these options evolve, I am no longer in my comfort zone advising these patients on their best options. Thus, in addition to discussing the possibility of impaired fertility with my patients, I refer them to a specialist reproductive endocrinology and infertility program.
Barriers to care
I was interested to see a study published last month in JAMA Network Open that explored clinicians’ perspectives on barriers to discussing fertility preservation for young women with cancer.
I found the concept of barriers in this context intriguing. The conclusions of the study remind me of another paper I highlighted in my editorial published in the Sept. 10 issue of HemOnc Today — in that analysis, the reluctance of oncologists to discuss financial toxicity of treatment with patients appeared to be related to a lack of knowledge and understanding of patients’ options. The conclusions of this study on fertility preservation echo that.
Several studies have reported variable, but disappointingly low, uptake of fertility preservation among girls and young women with cancer. The reasons for this are complex but a major factor in many studies has been the failure of clinicians to discuss options — many studies report that up to 50% of eligible women are not informed about cancer-related infertility and far fewer are referred to specialists. This new study takes an admittedly qualitative look at why that may be.
The researchers categorized the barriers reported by oncologists into various groups, but many of them suggest an underlying lack of knowledge or misconceptions of what’s involved. Several of the medical and surgical oncologists acknowledged ignorance or uncertainty about the risks for infertility related to specific regimens, or a lack of knowledge of current techniques, timelines or how to refer patients. Consequently, some of the oncologists included in the study lacked confidence to engage patients in discussions about fertility and, therefore, avoided those discussions completely.
Another interesting attitude was that fertility is a secondary consideration after the efficacy of the treatment — the concept that “you can’t have a child if you’re dead” was expressed by some clinicians who apparently disagreed with placing so much emphasis on fertility, especially if it had the potential to delay therapy.
Further, many clinicians expressed uncertainty about the ultimate success rate of the various interventions — again, indicating that many felt they were outside their comfort zone and, therefore, did not engage in the discussion. Other factors included lack of time, clinic workflows, and uncertainty about the cost and payment for these sometimes very expensive interventions.
It’s important to point out that this study was conducted in Canada and that many of the interviews appear to have taken place several years ago, so its direct relevance to current U.S. practice is unclear. A more recent Canadian study, presented at this year’s ASCO Quality Symposium, reported that over 80% of young women with breast cancer had a fertility discussion with an oncologist, suggesting improvement. But, even so, 26% of those who had not completed their family were not referred for a fertility preservation consult.
So, things may be improving, but there are still major obstacles to providing fertility services.
Researchers from University of Iowa reported at this year’s Supportive Care in Oncology Symposium that among children and young adults with invasive cancer, 18% had a fertility preservation referral and, of those, 25% underwent a procedure.
In multivariate analysis, insurance status was one of the factors associated with having a consultation, with a much lower rate among the un- or underinsured. In many ways, this is a particularly distressing disparity — I can think of two young couples in my own practice, both of whom lived in rural communities, distant from a major center, and with limited ability to pay for care. Both young women required autologous stem cell transplants but were unable to get coverage for fertility preservation. Fortunately, there are now legislative efforts to remove this obstacle.
Removing our uncertainties
As with financial toxicity discussions, it seems that the reluctance of some oncology clinicians to discuss fertility preservation is based on a lack of knowledge or false assumptions of what is involved.
There is a clear need for enhanced education for many oncology providers. We should be initiating fertility discussions with eligible patients and making sure they have early referral to a fertility specialist.
For our patients’ sake, we can’t allow our uncertainties to be a barrier to parenthood. We should keep Ray Romano’s words in mind.
References:
Covelli A, et al. JAMA Netw Open. 2019;doi:10.1001/jamanetworkopen.2019.14511.
Mobley E, et al. Abstract 139. Presented at: Supportive Care in Oncology Symposium; Oct. 25-26, 2019; San Francisco.
Oktay K, et al. J Clin Oncol. 2018;doi:10.1200/JCO.2018.78.1914.
Warner E, et al. Abstract 136. Presented at: ASCO Quality Care Symposium; Sept. 6-7, 2019; San Diego.
For more information:
John Sweetenham, MD, FRCP, FACP, is HemOnc Today’s Chief Medical Editor for Hematology. He also is associate director for clinical affairs at Harold C. Simmons Comprehensive Cancer Center at UT Southwestern Medical Center. He can be reached at john.sweetenham@utsouthwestern.edu.
Disclosure: Sweetenham reports no relevant financial disclosures.