Help AYA Survivors and Patients With Cancer Navigate Infertility
In part thanks to advancements in both cancer treatment and supportive care, the number of cancer survivors is expected to reach (https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2020/special-section-cancer-in-adolescents-and-young-adults-2020.pdf) 22 million by 2030. Adolescent and young adult (AYA) patients aged 15–39 constitute only 5% of new cancer diagnoses but have an 85% relative five-year survival rate (https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2020/special-section-cancer-in-adolescents-and-young-adults-2020.pdf). They represent a significant portion of all current and future cancer survivors and have unique needs (https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2020/special-section-cancer-in-adolescents-and-young-adults-2020.pdf), including reaching developmental milestones, coping with disruptions in personal and professional relationships, and encountering potential difficulties in family planning.
Infertility can be a particularly difficult issue for AYA patients and providers to plan for. Risk of infertility increases (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4500837/) with age at treatment and cumulative dose of radiation or alkylating chemotherapy. Although some intensive chemotherapy regimens almost certainly result in infertility, many other treatments can have varying or unknown impact. Stem cell transplants, alkylator or heavy metal chemotherapy, and pelvic, spinal, or abdominal radiation are associated with the highest risk (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2719717/) for infertility, up to 95% by some estimates.
However, research (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2719717/) has not yet demonstrated the fertility impact of many frequently used new treatments, including monoclonal antibodies, tyrosine kinase inhibitors, and immunotherapy.
How Infertility Affects Patients
Confronting infertility often leads to negative psychosocial effects for AYA patients and their families, including (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779291/):
- Altered sense of identity
- Lowered self-esteem
- Post-traumatic stress disorder
As many as 40% of women with known infertility after treatment for cervical cancer or lymphoma met clinical criteria (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2719717/) for depression.
Reproductive concerns can also deter healthy relationship building. One study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779291/) indicated an increase in risky sexual behavior to “test” presumed infertility.
Overcoming Barriers to AYA Infertility
Patients may experience a lack of knowledge, changing needs over the course of treatment, an inability to afford interventions, and lack of available resources. Patients are also seen frequently during active treatment, but points of contact during survivorship are more infrequent and care may be fragmented.
For providers, barriers can include lack of knowledge about available fertility preservation options, as well as (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3791875/):
- Physician’s lack of knowledge about infertility risks of treatments
- Lack of time during visits
- Physician’s assumptions about patients based on age or gender
In one study of pediatric oncologists, 73% agreed (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4500837/) that female patients should see a fertility preservation specialist, but less than a quarter reported consistently referring them to one. Female patients are more likely (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3791875/) to approach conversations about fertility with their healthcare providers. However, if male patients don’t appear to want to discuss the topic, providers should not assume that they aren’t concerned about fertility. Patients of all genders should be asked about their concerns.
How Nurses Can Help
Oncology RNs and advanced practice RNs (APRNs) can serve as patient advocates and navigators in assessing fertility needs and linking patients with available resources.
Many hospitals have AYA programs and resources available, but they may be embedded in pediatric programs and less available to young adult patients or their providers. APRNs can place referrals to those programs early in the patient’s care to ensure that their needs are met as they advance through treatment. AYA patients may also require referrals to reproductive endocrinology for consideration of fertility preservation prior to initiating treatment or for an assessment of their fertility following treatment in anticipation of advanced reproductive care.
Nurses can direct AYA patients to online resources such as Livestrong Fertility (https://www.livestrong.org/we-can-help/livestrong-fertility), Teen Cancer America (https://teencanceramerica.org/news-resources/resources/), and Young Survival Coalition (https://www.youngsurvival.org/), as well as peer support groups and patient advisory councils (both online and in person). Nurses should encourage (https://www.tandfonline.com/doi/abs/10.1080/15265161.2012.760674) patients to be active participants in their care.