"I wanna know what to expect" - Care needs regarding sexual and reproductive health after cancer in adolescence and young adulthood (AYA) and recommendations for providers.
Lehmann V, Both S, et al. • European journal of oncology nursing : the official journal of European Oncology Nursing Society • 2025
Communication is key in informing and supporting AYA cancer patients and survivors regarding their sexual and reproductive health, with providers needing to assess individual needs, normalize the topic, and tailor information accordingly.
Key Findings
Results
AYA cancer patients and survivors reported a need for more information about possible effects on sexual health to better anticipate physical and mental side effects of cancer.
Sample consisted of N=190 participants who were predominantly female (87.4%)
Participants were diagnosed with cancer between age 12-39 years
Common diagnoses included breast cancer (37.1%) or leukemia/lymphoma (27.2%)
Data was collected via an online survey with open-ended written responses that were qualitatively analyzed
Results
AYA patients and survivors expressed a need for providers who normalize the topic of sex, offer coping guidance, provide practical resources, and refer to specialists when needed.
Participants wanted support from providers who could offer 'guidance in coping with numerous questions'
Participants requested access to resources and 'practical tips and tricks'
Referral to specialists was identified as an important component of care
These findings emerged from qualitative analysis of open-ended survey responses
Results
AYA participants expressed a desire for providers to initiate conversations about sexual health and communicate openly and honestly without taboo, bias, or shame.
Participants specifically noted they wanted providers to proactively raise the topic rather than waiting for patients to ask
The language 'without taboo, bias, or shame' reflects participants' own framing of desired communication
This finding emerged across a predominantly female sample (87.4%)
The study title quote 'I wanna know what to expect' reflects the anticipatory information need expressed by participants
Results
Care needs regarding reproductive health centered on unmet information needs about navigating reproduction after cancer.
Participants needed information about fertility status and assessment options
Information gaps included reproduction and contraceptive options, the safety of pregnancies after cancer, and alternatives to biological parenthood
The '(im)possibility of alternatives to biological parenthood' was identified as a specific area of unmet need
These needs were identified through qualitative analysis of written open answers from cancer patients and survivors
Conclusions
Healthcare providers are recommended to assess individual patients' and survivors' needs and tailor tangible information accordingly, with additional specific recommendations presented.
The study produced a set of recommendations for healthcare providers based on the qualitative findings
Tailoring information to be 'tangible' was highlighted as a key principle
Recommendations addressed both sexual health and reproductive/fertility health domains
The study population included both current cancer patients and survivors, broadening the applicability of recommendations
What This Means
This research surveyed 190 adolescent and young adult (AYA) cancer patients and survivors—mostly women diagnosed between ages 12 and 39 with cancers such as breast cancer or leukemia/lymphoma—about what kind of support they needed around sexual health and reproductive health. Participants answered open-ended questions online, and the researchers analyzed the written responses to identify common themes and unmet needs. The study found that many AYA cancer patients and survivors felt they did not receive enough information or support in these areas during or after their cancer care.
In terms of sexual health, participants wanted their healthcare providers to bring up the topic proactively instead of waiting to be asked, and to discuss it openly and without embarrassment or judgment. They wanted practical information about how cancer and its treatments might affect their sex lives, so they could better prepare for and cope with those changes. For reproductive health, participants described significant gaps in information about their fertility status, options for having children after cancer, contraception, the safety of pregnancy after treatment, and alternatives to biological parenthood such as adoption or surrogacy.
This research suggests that open, individualized communication from healthcare providers is essential for meeting the sexual and reproductive health needs of young cancer patients and survivors. Providers should not wait for patients to raise these topics but should instead initiate these conversations, normalize them, and tailor their guidance to each person's specific situation and questions. The study also produced a set of practical recommendations for clinicians to better support this population.
Lehmann V, Both S, Elzevier H, Tromp J, den Oudsten B. (2025). "I wanna know what to expect" - Care needs regarding sexual and reproductive health after cancer in adolescence and young adulthood (AYA) and recommendations for providers.. European journal of oncology nursing : the official journal of European Oncology Nursing Society. https://doi.org/10.1016/j.ejon.2025.102791