Nowadays most adolescents and young adults (AYAs) suffering from cancer have a high likelihood of becoming long-term survivors. Data indicate that a large percentage of AYA cancer survivors display a strong wish for biological parenthood (1). However, cancer treatment may negatively affect the fertility potential of these individuals, leading to reproductive concerns and fertility-related distress (2–6). The concerns are well-founded, as a cancer diagnosis before the age of 40 significantly reduces both the likelihood to achieve pregnancy and to have future biologically-related children (7–9). In their updated evidence-based guidelines, published 2018, the American Society of Clinical Oncology (ASCO) indicated the need for fertility counselling and referral for fertility preservation (FP), if possible before initiation of cancer treatment (10).

Sperm cryopreservation has been standard-of-care for male adolescents for several decades, and it is feasible once spermarche has been achieved and the testis volume has reached 8 ml (11). The procedure is not expected to delay the onset of cancer treatment. Oocyte cryopreservation, on the other hand, was only recognized as a clinical treatment a decade ago (10), and although it can offer an option to preserve mature oocytes for adult women and post-pubescent girls, the procedure requires continued healthcare interventions, transvaginal exams and ovarian puncture for follicle aspiration, as well as time for ovarian stimulation with gonadotropins. If the stimulation protocol can be applied with random start, the time to egg retrieval averages about two weeks. Studies on patients with breast cancer undergoing FP at adult age, have not shown any increase in disease-specific mortality or relapse among the women undergoing FP (12). However, oocyte cryopreservation in female adolescents remains controversial due to several factors including limited experience of applying protocols for ovarian stimulation on an immature ovary, possibly causing an inappropriate ovarian response (13–15), the necessity to rapidly start a treatment using daily injections, ultrasound, and blood work (15) and the limited experience among young patients of gynecological examinations or transvaginal insertions (16). As the procedures surrounding sperm cryopreservation are less demanding physically when compared to oocyte cryopreservation, it is not surprising that utilization of FP is higher among young men than women (17, 18). However, gender disparities have been reported not only in the performance of FP in young adults with cancer, but also in their counselling, indicating that young men are more likely to be informed on potential infertility outcomes following cancer treatment, and more often offered methods for FP, than young women facing similarly gonadotoxic treatments (19).

For pre-pubertal patients, additional FP methods include the retrieval of ovarian and testicular tissues for cryopreservation. These options have been initiated across Europe since the early 2000’s within Ethics Review Board approved research protocols (20, 21). The long-term experience with these methods applied to prepubertal children has been reported from a prospective cohort, supporting the feasibility and the safety of these approaches (22, 23). While results on tissue transplantation to recover fertility potential are still limited among patients that were prepubertal at tissue cryopreservation, ovarian tissue transplantation has demonstrated efficacy and robustness in adult women (24). However, there is a need of continued research to develop methods for in vitro gametogenesis for the cases where transplantation of the gonadal tissue is precluded, which is highlighted in the current international guidelines for AYAs with cancer (10, 25–27).

The international guidelines for FP in children and teenagers (25, 26), are developed to ensure that healthcare providers are familiar with the available methods and can provide equal access to FP counselling for children and teenagers with cancer. With this study we wished to investigate how adolescents treated for cancer experienced fertility counselling and fertility preservation procedures at a reference center specialized on FP within the public Swedish healthcare system.

The study had a qualitative design and phenomenological approach with semi-structured individual face-to-face interviews. Study participants were individuals diagnosed with cancer at adolescence and referred to the Reproductive Medicine Clinic of Karolinska University Hospital for fertility preservation. Referrals of patients with oncologic indications are accepted for FP without delay when a cancer treatment with potential negative on fertility is planned. Additionally, survivors of childhood cancer that were not referred at time of diagnosis may be referred several years after completion of treatment, at transfer to adult healthcare. The reproductive Medicine Clinic of Karolinska University Hospital is the largest in Sweden and have been counselling and treating female and male adolescent patients for over twenty years (28, 29).

At time of counselling, patients had given informed consent to participate in a prospective follow-up of clinical outcomes and permission to contact them for future interview studies. For this study, individuals were approached after having accessed FP indicated by a cancer diagnosis during childhood or adolescence. Exclusion criteria were age under 15 at the time of the interview, having an ongoing cancer treatment or being unable to communicate in Swedish or English. Individuals were contacted by phone (n =34) and a letter with study information together with a study specific consent form was sent to those that expressed interest to participate in the study (n=17), among them twelve signed the consent but two individuals were not available thereafter after repeated contact attempts, thus ten individuals were interviewed ( Figure 1 ). The interviews were conducted on the online platform Zoom by GA between June and August 2023. The interviews were conducted in Swedish and, in one case, in English, using open-ended questions from a semi-structured interview guide developed by GA. GA had not been previously involved in the individuals’ healthcare.

The interviews commenced with the overarching question: How was your experience of freezing eggs/sperm? Subsequently, the interviews followed the participants’ narratives but were guided, when necessary, to cover experiences of the following areas: Risk of infertility and thoughts about the future, Fertility preservation procedures, and Healthcare encounters. Follow-up questions were posed as needed to deepen or clarify the informant’s narrative, such as What did you mean when you said…? or Could you tell me more about…? After each interview, field notes were documented, capturing impressions of the interview situation and the elements that were particularly prominent in the participant’s narrative. The interviews lasted between 18 and 47 minutes, with an average duration of 30 minutes and were digitally recorded and transcribed verbatim. The study follows the Standards for Reporting Qualitative Research (SRQR) and is reported according to the SRQR Checklist (30).

Data was analyzed by content analysis (31) using an inductive approach. Through open coding, units of meaning associated with the study objective were identified and condensed into codes that mirrored their content. Codes conveying similar content were subsequently grouped into categories, and these categories were further organized hierarchically into main categories and sub-categories. Quotations provided to support the content (30), are presented with the interviewer’s questions, clarifications, and omissions (indicated by three dots) denoted within squared brackets ( Tables 1 , 2 ).

The study was approved by the Swedish Ethical Review Authority (Dnr 2011/1758-31/2, amendment Dnr 2014/286-32, 2018/275-32 and 2022-05969-02).

In all, ten individuals were interviewed, six female and four males. During one interview, a legal guardian participated, providing support for the informant. There was no difference in the average age between genders at the time of the interview, nor in the age at FP; however, the average age at the time of diagnosis was lower among females than among males. The diagnoses included Hodgkin’s lymphoma (n=4), Rhabdomyosarcoma (n=1), Testicular cancer (n=1), Germinoma (n=1), Ovarian cancer (n=1), Soft tissue sarcoma in the uterus/bladder (n=1), and Colon cancer (n=1). Additional socio-demographic data are shown in Table 3 . All male participants were post pubertal at diagnosis and were referred from their pediatric oncologists and all had cryopreserved sperm as an acute measure before initiating cancer treatment. Two females, post pubertal at diagnosis, had received counselling at time of cancer treatment and undergone emergency FP, The remaining four girls were prepubertal at diagnosis and were not referred to the fertility clinic for counselling at diagnosis, but received a referral for reproductive counselling when being transferred to adult healthcare several years after completion of their cancer treatment. All female participants chose to proceed with oocyte cryopreservation. All study participants cryopreserved gametes successfully.

During the analysis, three main categories were identified: Communication about the risk of infertility and the fertility preservation, Freezing gametes - the process and healthcare encounters, and The decision to preserve gametes for one’s own sake. These three main categories have eight subcategories ( Table 4 ).

In this qualitative semi-structured interview study, we investigated the experience of fertility preservation in connection with cancer diagnosis at adolescent age among young AYAs after completion of cancer treatment. The study participants were generally not aware of the possible negative impact of cancer treatment on fertility prior to being informed through healthcare, and while the Swedish National Guidelines include a recommendation of fertility counselling at diagnosis (27), that information was not provided in a structured manner to all participants. This is in line with previous international studies indicating that the communication regarding late effects of cancer treatment is often poor (32, 33). Yet, a recommendation from the healthcare provider to proceed with FP has been shown to be among the most important factors when deciding to cryopreserve sperm (34, 35), and several study participants mentioned that the physician’s recommendation played an important part in their decision to proceed with FP. The main barriers to communication on fertility threats as sequelae of cancer treatment reported from oncologists include the lack of time, lack of knowledge, lack of specialized communication skills and the need to prioritize information to not overwhelm the patient (36). However, the study participants who received fertility-information at the same occasion in which they received their cancer diagnosis would have preferred to receive that information at a later appointment. The females who had been informed at a young age expressed least distress about the possibility of future infertility. Several individuals expressed a wish to have received information not only on fertility preservation options but also on the gynecological exams from their referring oncologists, prior to the first consultation at the fertility clinic.

Several AYAs in this study mentioned the role of their relatives in requesting and interpreting information, but also in decision making and as a support during examinations. This highlights how family and relatives can provide crucial support for young cancer patients. Previous studies have also underscored that the best way to protect fertility among underage patients is to actively include family in the discussion (37–39), but others note that the parents influence on decision making may be affected by their own perspective and predisposed by cultural beliefs, fear, or a wish for grandchildren (1, 40, 41). It has been shown that parents to female cancer patients are less likely to recommend FP to their children after being informed on the implications of the procedure (1). Parents have also been known to underestimate the importance future fertility in their children as their main focus is survival (39), thereby delaying discussions regarding future fertility. Often young age and a low level of patient autonomy increases the parental involvement (42, 43), but when the families take full control over the decision making it is rarely appreciated (37, 38, 44). Thus, the physician has a key role in keeping the patient’s perspective in focus, while thoroughly informing both patients and their families on the risk for late effects, and the risks and possibilities involved in counteracting them through FP. The PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group (25) have developed recommendations on how to address treatment-induced infertility risk and FP in patients with childhood, adolescent, and young adult cancer. These include, among other things, that healthcare providers should foster patient autonomy by assessing emotional, psychological, and intellectual status during the informed consent process. Decisions about fertility preservation should prioritize the patient’s best interest, rather than the interests of parents, caregivers, or partners. Additionally, a two-stage consent process should be implemented: initially at diagnosis for harvesting and storing tissue, and later post-therapy at an appropriate age for deciding on the use of the stored material. An important aspect to improve equitable healthcare include also the provision of patient brochures and materials in languages spoken by minorities in specific countries, such as the reported efforts in Sweden to improve decision aids for FP of children and teenagers with cancer in that country (27).

The ethical considerations surrounding the choice to proceed with FP in female adolescents are considerable and include the respect of personal integrity, the consent process, the cultural aspects that can set transvaginal examinations in different contexts and the priority of fertility counselling when being challenged with a life-threatening disease (45). While female study participants were generally satisfied with the information provided at the fertility clinic regarding FP methodology and procedures needed, the first gynecological examination or transvaginal ultrasound was still distressing and some experienced pain and discomfort. The study participants expressed a wish for additional, and more complete, information regarding the vaginal exams from their referring physician, and also previous to, and during, the gynecological examination to feel safe. Cancer survivors may be affected by post-traumatic stress disorder or other forms of psychological distress (46, 47). This can intensify the strain on the individual, possibly contributing to a more challenging and painful experience during the vaginal exams compared to individuals without previous trauma. While it is unfortunately common for young women to experience some level of discomfort during their first gynecological examinations, studies indicate that clear communication surrounding the procedure and allowing for extra time during the appointment, where both the practitioner and the patient have time to establish a relationship and ask questions, can alleviate fear and also reduce anxiety and pain (48–50). Similar recommendations are also given on how to handle previous trauma in gynecological settings (51, 52). The young women also expressed that they would have felt more comfortable with a female gynecologist. This has been observed in multiple studies, where younger women have a particularly strong preference for a female practitioner (49, 53).

The young male participants generally had a positive experience of semen banking They received limited information regarding the methodology, but felt it was sufficient. Discomfort was mostly centered around a feeling of embarrassment, but all participants considered the procedure uncomplicated and as something they were pleased to have completed. The differences between the male and female experience of the procedures required to cryopreserve gametes underscores the gender-based inequality also observed in previous studies of fertility preservation information and access in the context of cancer (19).

The study participants showed less verbalized concerns about future fertility than noted in similar studies on an older population (54, 55), perhaps because family building is still in the distant future with the mean age of AYAs in this cohort being 19,4 years, while the mean age for a first child in Stockholm is 31,2 years (56). The decrease in verbalized concerns may also indicate a shift in the perception of possible infertility. There is a possibility that young adults no longer perceive the same stigma surrounding the ability to have biological children as previous generations did. The participants’ lack of concern and view of FP as a “back-up” for the future might also reflect on either an inability of the healthcare provider to adequately convey the uncertainty of future ART, or improved means of discussing the possibility of future infertility. Nevertheless, having undergone FP seems to have provided a sense of security regarding future fertility and our results indicate that undergoing FP has buffered fertility distress.

A strength of this qualitative study is that we are able to highlight the experiences of an often-overlooked age group, where the study participants all underwent FP in their late teens. This work correlates with quantitative data addressing the same topic but has enabled a deeper insight and allowed the very young FP patients to give voice to their experience of FP.

There are, however, limitations to a qualitative approach such as not being able to control the narrative, the risk of participants avoiding sensitive topics and the risk of not reaching saturation. There was a risk of responder bias since not all patients who were contacted agreed to interview. This may have excluded patients less inclined to reminisce further about their treatment experiences and involving them may have given more contrasting views. Also, all study participants had successfully preserved gametes which may influence their experience positively. Finally, this study was conducted at a single academic center in an optimum resource setting (57), and it is difficult to know whether similar findings would be gained at other hospitals acting under the same guidelines. Different criteria for FP access and funding, as well as different pathways of referral, are likely to influence the FP experience. Also, a low resource center might not have access to all FP options, might not have national standards for eg. FP counselling, nor for offering the same options for future fertility treatments (57).

In conclusion, a first gynecological examination at a young age, combined with a recent cancer diagnosis, presents unique challenges that need to be further acknowledged by the healthcare providers. The situation requires special considerations and tailored guidelines at reproductive health units. It is essential to systematically address the patients’ needs to provide appropriate care and support for this group. In summary, based on our study results, we recommend: 1) Fertility information well in advance of the FP decision-making, first provided by the pediatric oncologist. 2) Information on the planned gynecological procedures to be provided before and during the examinations, explaining what is going to happen, and the objective of the exam. 3) Time and encouragement to ask questions. 4) When possible, a same sex practitioner experienced in trauma informed care to conduct the first pelvic exams.

The documented experience of undergoing fertility preservation as a teenager highlights gaps in communication about fertility risks and treatment options. Healthcare provider recommendations significantly influence decisions to pursue fertility preservation, while family support plays a crucial role both in decision making as well as a support during treatment. Improved communication strategies tailored to both the patients and their families are essential for informed decision-making and supportive care. Gender disparities exist, both regarding information and experience of the treatment. While young the young men were generally satisfied, the young women expressed discomfort and emphasized a preference for female gynecologists and the importance of early and clear communication. Specifically, improved communication at referral and more information regarding the vaginal examinations prior to, and during, the exams were requested. Possible improvements include the training of oncologists on the specific needs of AYAs with cancer to gain this knowledge, thus facilitating patient referrals and future gynecological consultations, or the availability of a reproductive specialist consultation at the oncologic center. Independent of their treatment experience, undergoing fertility preservation indicated by a cancer diagnosis at young age appears to provide a sense of security regarding future fertility and mitigates fertility-related distress in both male and female teenage patients, who appreciated the opportunity to access fertility preservation options.