Approximately 10% of people diagnosed with cancer are within their reproductive years (generally defined as under 45).[i] Although life-saving, cancer treatments (e.g. radiation, chemotherapy, and surgery) can also lead to infertility in both females and males. Established reproductive technologies for women and men like gamete freezing and embryo freezing allow cancer patients to preserve their fertility in case they want to become biological parents in the future. As survival rates have increased, fertility preservation has become a more significant quality of life issue.[ii] Indeed, both young women and men state that the fertility preservation is important for them and the majority of those who are childless at the time of their cancer diagnosis express a desire to have biological children in the future.[iii],[iv]
Although various medical organizations, like the American Society of Clinical Oncology, recommend that oncologists refer patients for counseling regarding fertility preservation options,[v] unfortunately patients are frequently not adequately informed and sometimes not informed at all about fertility preservation.[vi] Some oncologists don’t consider fertility preservation to be an important issue, as they are more focused on saving the patients’ lives and see fertility preservation as a secondary consideration. Research has shown that even when oncologists refer their patients for fertility preservation they often do so based on social factors (they are more likely to refer wealthy, white, heterosexual, married patients) rather than purely on medical indications.[vii],[viii] Even when health care providers discuss fertility preservation with patients, many patients say that once they heard the word “cancer” as a diagnosis, they didn’t absorb much else from their initial conversation with their provider.
This finding has lead some places to schedule a follow-up visit for newly diagnosed patients with a health care provider specializing in fertility preservation. However, having a fertility preservation patient navigator is expensive and the vast majority of hospitals don’t have someone dedicated to that position. Northwestern University’s Oncofertilty Consortium is one of the few places where there is a full time person devoted solely to providing patient navigation for fertility preservation. This navigator is also available as a resource for providers and patients outside of the Northwestern system.[ix] There are some pilot programs at various institutions to train nurses and other health care providers to be able to counsel newly diagnosed cancer patients about their fertility preservation options and to encourage oncologists to refer all newly diagnosed cancer patients to these trained providers.
While not all institutions will be able to provide the same degree of patient navigation regarding fertility preservation, it is imperative that some sort of system is in place to make sure patients are educated about fertility preservation. Many women find the diagnosis of potential iatrogenic (treatment-induced) infertility to be just as or more devastating than the cancer diagnosis.[x], [xi] This can affect women’s decisions about cancer treatment, including leading them to delay their cancer treatment in order to preserve their fertility and to choose less effective cancer treatment methods if these methods are more likely to spare their fertility.[xii] Given how important fertility preservation is to cancer patients, healthcare providers and institutions should strive to ensure that all cancer patients are made aware of fertility preservation technologies.
Enter the Canadian Oncofertility Referral Network here
[i]Howlader N, Noone AM, Krapcho M, et al (eds): SEER Cancer Statistics Review, 1975-2009 (Vintage 2009 Populations). Bethesda, MD, National Cancer, 2009.
Institute, 2012. http://seer.cancer.gov/csr/1975_2009_pops09/
[ii]Reh AE, Lu L, Weinerman R, et al: Treatment outcomes and quality-of-life assessment in a university-based fertility preservation program: Results of a registry of female cancer patients. J Assist Reprod Genet 28:635-641, 2011.
[iii]Crawshaw MA, Sloper P. ‘Swimming against the tide’—the influence of fertility matters on the transition to adulthood or survivorship following adolescent cancer. Eur J Cancer Care. 19:610-20, 2010.
[iv]Schover LR, Rubicki LA, Martin BA, Bringelsen KA. Having children after cancer. A pilot survey of survivors’ attitudes and experiences. Cancer 86:697–709, 1999.
[v]Lee SJ, Schover LR, Partridge AH, et al: American Society of Clinical Oncology recommendations on fertility preservation in people treated for cancer. J Clin Oncol 24:2917-2931, 2006.
[vi]Snyder KA, Pearse W: Discussing fertility preservation options with patients with cancer. JAMA 306:202-203, 2011.
[vii]Lee SJ, Schover LR, Partridge AH, et al: American Society of Clinical Oncology recommendations on fertility preservation in people treated for cancer. J Clin Oncol 24:2917-2931, 2006.
[viii]Snyder KA, Pearse W: Discussing fertility preservation options with patients with cancer. JAMA 306:202-203, 2011.
[ix] For more information, see http://oncofertility.northwestern.edu/fertline.
[x]Schover LR. Sexuality and fertility after cancer. New York: Wiley, 1997.
[xi]Schover LR. Psychosocial aspects of infertility and decisions about reproduction in young cancer survivors: a review. Med Paediatr Oncol 33:53–39, 1999.
[xii]Patridge AH, Gelber S, Peppercorn J, Sampson E, Knudsen K, Laufer M, et al. Web-based survey of fertility issues in young women with breast cancer. J Clin Oncol 22:4174–83, 2004.
Lisa Campo-Engelstein is Assistant Professor at the Alden March Bioethics Institute and Department of OBGYN at Albany Medical College in Albany, New York. She earned a Ph.D. from Michigan State University in philosophy with a focus in bioethics and feminist theory. She completed a postdoctoral fellowship with the Oncofertility Consortium at Northwestern University Feinberg School of Medicine. Her main research area is reproductive ethics, especially contraception, oncofertility, and assisted reproductive technologies.