The lived experience of reproductive health concerns among female cancer survivors: a descriptive phenomenological study

Yoshiko Ota 1,2✉ Phone+81-76-265-2576 Emaily.ota@staff.kanazawa-u.ac.jp

Koji Tanaka 2

Hirofumi Terakawa 3

Kohei Hosokawa 4

Kyoko Nagata 2

Yoshiko Maida 2

Kana Minami 2

1 Division of Health Sciences, Graduate School of Medical Sciences Kanazawa University Kanazawa Japan

2 Faculty of Health Sciences, Institute of Medical, Pharmaceutical and Health Sciences Kanazawa University Kanazawa, 5-11-80 Kodatsuno 920-0942 Kanazawa Ishikawa Japan

3 Department of Breast Surgery Kanazawa University Hospital 13 Takaramachi 920-0934 Kanazawa, Kanazawa Ishikawa Japan

4 Department of Hematology, Faculty of Medicine, Institute of Medical Pharmaceutical and Health Sciences Kanazawa University 13 Takaramachi 920-0934 Kanazawa, Kanazawa Ishikawa Japan

Yoshiko Ota^1,2, Koji Tanaka², Hirofumi Terakawa³, Kohei Hosokawa⁴, Kyoko Nagata², Yoshiko Maida², Kana Minami²

¹Division of Health Sciences, Graduate School of Medical Sciences, Kanazawa University, Kanazawa, Japan

²Faculty of Health Sciences, Institute of Medical, Pharmaceutical and Health Sciences, Kanazawa University, Kanazawa, 5-11-80 Kodatsuno, Kanazawa, Ishikawa 920–0942, Japan

³Department of Breast Surgery, Kanazawa University Hospital, Kanazawa, 13 Takaramachi, Kanazawa, Ishikawa 920–0934, Japan

⁴Department of Hematology, Faculty of Medicine, Institute of Medical Pharmaceutical and Health Sciences, Kanazawa University, Kanazawa, 13 Takaramachi, Kanazawa, Ishikawa 920–0934, Japan

Corresponding author: Yoshiko Ota

Faculty of Health Sciences, Institute of Medical, Pharmaceutical and Health Sciences, Kanazawa University, 5-11-80 Kodatsuno, Kanazawa, Ishikawa 920–0942, Japan

Tel: +81-76-265-2576

Email: y.ota@staff.kanazawa-u.ac.jp

Abstract

Background

Female cancer survivors who received their diagnosis during adolescence or young adulthood may experience adverse effects of the treatment on their reproductive health, resulting in significant psychological and psychosocial burdens. These reproductive health concerns provoke profound conflicts regarding femininity and life trajectory, underscoring the importance of understanding their lived experiences within the context of cancer survivorship. This study aimed to elucidate the lived experience of reproductive health concerns among female cancer survivors who developed cancer as adolescents or young adults.

Methods

This study used a descriptive phenomenological approach. Semi-structured interviews were conducted with 19 female cancer survivors who developed cancer as adolescents or young adults and who either had a history of chemotherapy or radiation therapy or were undergoing treatment that prohibits pregnancy. Data were analyzed using the Colaizzi Model.

Results

Three clusters, namely “Concerns about loss,” “Constraints imposed by social norms,” and “Coming to terms with concerns about loss,” and 11 themes were extracted. The themes included “Concerns about the impact of treatment toxicity on fertility,” “Concerns about inability to fulfill the maternal role,” “Loss of ability to conceive naturally,” “Stigma associated with expectations to prioritize the maternal role over fertility,” “Prioritizing survival,” and “Concerns about loss of feminine identity,” among others.

Conclusion

The impact on reproductive health raises strong awareness of the effects on one’s future and family, which can cause wavering trust in one’s body and feelings of guilt about the inability to fulfill maternal roles. These concerns relate to social role expectations and self-stigma, leading to potential identity crises.

Keywords

breast cancer

cancer survivors

decision making

fertility

hematologic neoplasms

nursing

phenomenology

reproductive health

Background

The 2018 definition of Sexual and Reproductive Health and Rights states that achieving physical, emotional, mental, and social well-being in all aspects of sexuality and reproduction is considered foundational to people’s health, survival, and overall well-being [1]. Based on this definition, it is essential that women’s bodily and reproductive rights are respected and that they are empowered with meaningful choices throughout every stage of life.

Cancer is increasingly seen as a chronic condition that people live with, often involving long-term effects such as side effects and fear of recurrence [2]. The concept of survivorship has expanded to encompass not only the post-treatment phase, but also the period from diagnosis through follow-up care [3]. According to the World Health Organization’s 1948 definition of health [4], health is not simply the absence of illness but includes one’s overall well-being, lifestyle, and social relationships. To protect the health of cancer survivors living with a chronic condition, it is necessary to consider whether treatment side effects and long-term impacts may threaten their sexual and reproductive health and rights. For young women in particular, treatment-related declines in reproductive endocrine function or the need for mastectomy can profoundly affect their sense of femininity or womanhood [5]. Furthermore, reduced reproductive function can also lead to both physical and psychological distress due to hormonal imbalances [6].

Globally, approximately 1.3 million individuals aged 15 to 39 years are diagnosed with cancer each year [7]. Cancers occurring in this age group exhibit distinct characteristics and etiologies compared with those diagnosed in children under the age of 15 years or adults over the age of 40 years [8]. There are various perspectives on age classifications, depending on etiological and psychosocial considerations [9]. With the aim of comprehensively examining psychosocial issues across life stages, this study adopts the classification of “adolescent” as 15–19 years of age [10], and “young adult” as 20–39 years of age, based on definitions proposed by collaborative groups such as the European Society for Medical Oncology and the European Society for Paediatric Oncology [11, 12]. Accordingly, the 15–39-year age range is referred to as the “adolescent and young adult” (AYA) population.

For those diagnosed with cancer during the AYA years, the disease can interrupt key developmental milestones and create a variety of life-stage challenges [13], including financial strain, psychological distress, and difficulties in interpersonal relationships [14].

Socially marginalized women are often influenced by prevailing gender and social norms, which lead them to feel ashamed and stay silent about reproductive health issues [15]. Young female cancer survivors, who may also experience marginalization, tend to take a restrained and cautious stance when discussing topics such as sexual activity or infertility [16]. In facing a sensitive illness like cancer, they often experience inner conflict about their roles and identity as women [17, 18]. Identity is shaped by the cultural and religious context in which a person is raised [19], and research shows that female cancer survivors are also shaped by cultural and religious values [20, 21]. Young female survivors may also feel pressure from societal expectations placed on them as women to bear and raise children.

Between 1975 and 1998, the five-year survival rate for cancer among AYA patients improved more slowly than that of children or older adults [12]. In the subsequent 15 years, however, advances in treatment raised the survival rate to over 80%, approaching levels seen in pediatric patients [22, 23]. The incidence of AYA cancer is projected to continue rising, and with it, the number of young long-term survivors is expected to increase [7]. However, as treatment outcomes and physical health continue to be prioritized, support for the psychosocial challenges faced by AYA cancer survivors remains insufficient [24].

Among AYA cancers, incidence rates are highest for breast, thyroid, and cervical cancer, followed by leukemia; breast cancer and leukemia account for the highest mortality rates [25]. Both incidence and mortality rates are higher for women than for men [25]. These high-incidence and high-mortality cancers are commonly treated with interventions that carry significant risks to reproductive health, including reduced reproductive endocrine function and the removal of reproductive organs or breasts. This background highlights the importance of addressing the reproductive health of female AYA cancer survivors.

Advances in assisted reproductive technology have progressed to help preserve the option of having children for patients undergoing cancer treatment [26]. Guidelines from the American Society of Clinical Oncology and the European Society of Human Reproduction and Embryology recommend that, before beginning cancer treatment, healthcare providers explain the potential impact on fertility and offer information about fertility preservation therapies to patients who wish to have children [27, 28]. These are recognized as important considerations in the context of cancer treatment.

However, even within such established support frameworks, AYA women are known to experience greater psychological distress compared with men due to fertility-related concerns, indicating the importance of age-specific nursing care led by nurse specialists [29, 30]. Some female cancer survivors view parenthood as central to their lives. These individuals tend to exhibit stronger depressive symptoms when their concerns about fertility are more pronounced [31]. Women with secondary infertility often experience the absence or loss of a child they were unable to conceive as a form of trauma, much like women with primary infertility [32]. However, their experiences tend to receive less social recognition and are more likely to be overlooked [33]. Additionally, women with cancer who already have children may face a form of suffering unique to mothers. Nevertheless, this distress may not be fully recognized or understood by healthcare providers.

These experiences extend beyond the treatment period and are deeply connected to women’s long-term life choices and overall well-being. In cancer survivorship, it is essential to adopt a perspective that supports women’s reproductive health throughout their lives.

Therefore, the aim of this study was to elucidate the lived experience of reproductive health concerns among female cancer survivors who received their diagnosis during adolescence or young adulthood. This understanding could help improve support for treatment-related decision-making, deepen our understanding of their lives across the life course, and expand the scope of nursing care to better uphold reproductive health and rights.

Methods

Study design

This qualitative descriptive study employed a descriptive phenomenological approach based on the Colaizzi model [34]. Colaizzi holds that human experience does not exist in isolation but emerges through one’s engagement with the world. It is existentially real not only for oneself but also for others, and constitutes a mode of being-in-the-world. Understanding lived experience is existentially significant and, therefore, an essential and legitimate element of studying human psychology [34]. This method seeks to define the structure of phenomena—identifying their essential components and clarifying their human significance [35].

For female cancer survivors diagnosed in adolescence and young adulthood, experiences of reproductive health concerns arising from treatment are not confined to personal intention or awareness. Rather, they are shaped by relationships with partners, family, and one’s way of living, all reflecting the broader relational contexts in which life unfolds. As such, this methodology is particularly suited to exploring lived experiences, including the ways individuals exist in relation to their surroundings.

This study was performed in accordance with COREQ guidelines (Additional File 1).

Study setting and participants

This study included women who received a diagnosis of breast cancer or hematologic malignancy (leukemia or malignant lymphoma) between the ages of 18 and 39 years, and who had either undergone chemotherapy or radiation therapy or were currently receiving hormone therapy or molecular targeted therapy for which pregnancy was contraindicated. The lower age limit was set at 18 years because this is the age of adulthood under Japanese law, when individuals can provide informed consent for medical treatment. To be eligible, participants needed to have been informed of their primary diagnosis and the potential impact of treatment on reproductive endocrine function. Women who had not received such information or who were unable to communicate effectively in Japanese were excluded.

To ensure that participants could articulate their experiences in their own words, purposive sampling was employed, and recruitment was conducted using two methods. First, the lead author obtained the cooperation of the director of a cancer center at a designated cancer care hospital in central Japan, with whom she had a prior relationship. The director introduced her to the heads of the medical oncology and breast surgery departments, who then asked physicians in their departments to identify patients who satisfied the selection criteria. These physicians identified 17 women whom they considered physically and mentally capable of discussing their experiences.

The second recruitment method was snowball sampling, in which the lead author approached individuals who had expressed interest in the study. Two participants were recruited through this route. In total, 19 women were recruited, and none declined to participate.

Data collection

Data collection took place between August 2023 and June 2024. During routine follow-up visits, attending physicians (medical oncologists or breast surgeons) provided eligible participants with written information about the study and explained its purpose verbally.

If a participant expressed interest in joining the study, the lead author conducted a face-to-face meeting to provide a detailed explanation and obtained informed consent, doing so only after establishing sufficient trust with the participant.

For participants recruited through other channels, the process similarly involved presenting an overview of the study through written materials, followed by detailed explanations and obtaining written consent from those interested. Interviews were conducted either in person in a private hospital room or remotely via secure communication software, with both the participant and researcher in private mode. A semi-structured interview guide (see Table 1) provided a framework for discussion, but the researcher encouraged participants to focus on topics they wished to share, fostering an interactive dialogue to explore their experiences in depth. This approach ensured that participants could openly discuss their lived experiences related to reproductive health concerns from the time of their cancer diagnosis to the present. All interviews were conducted, audio-recorded, and transcribed by the lead author (YO), a female PhD student who is a registered nurse and midwife with extensive clinical experience in midwifery. She has also been trained in qualitative research interviewing and is a cancer survivor who underwent chemotherapy as a young adult.

Table 1

Interview guide
1. Could you tell me about when you found out about your illness and received your diagnosis?
2. When your treatment was explained to you, was there any discussion about fertility (for example, how easy it would be to get pregnant)?
3. What kind of life did you envision for yourself as a mother before your illness?
4. How did becoming ill affect these ideas?
5. During your treatment, did you have any thoughts or feelings about its impact on your fertility?
6. Has anything notably changed since your treatment?
7. How do you see yourself now?
8. Through your experience of illness, what are your current thoughts about your fertility concerns?
9. Lastly, is there anything you'd like to add or any questions you might have?

[Insert Table 1 near here.]

Data analysis

Data analysis was performed using the seven stages of the Colaizzi model [34]. First, all participant transcripts were read thoroughly to grasp the meaning of their experiences with reproductive health concerns stemming from cancer treatment. Second, significant phrases and sentences related to reproductive health concerns experiences were extracted from each transcript. Third, meanings were formulated from these significant statements, ensuring fidelity to the data. Fourth, this process was repeated for all transcripts, organizing the formulated meanings into themes, which were then grouped into clusters. These clusters were verified against the original transcripts to ensure validity. During this stage, any contradictions between clusters were noted, and aspects that could not be clearly articulated were analyzed using creative insight. Fifth, all findings were integrated into an “exhaustive description” of the phenomenon under study. Sixth, this description was condensed into a concise, dense statement capturing the essential aspects of the phenomenon to provide a comprehensive explanation. Seventh, 10 of the 19 participants were invited to review the analysis process and the exhaustive description. All 10 participants confirmed that the findings accurately reflected their experiences. Data collection was considered complete once a comprehensive and exhaustive description of the phenomenon had been achieved.

The lead author (YO) identified meanings and extracted relevant phrases and sentences from the transcripts. Formulating meanings and generating themes and clusters were conducted collaboratively by YO and the second author (KT) who is a member of the nursing faculty at Kanazawa University and a practicing mental health nurse (RN, PHN, PhD). They discussed and refined these elements until reaching a consensus. Once clustering was complete, the fifth author (KN), an expert in mental health nursing, compared the themes and clusters with the formulated meanings to validate their accuracy. Additionally, the sixth author (YM), an obstetrician-gynecologist, and the seventh author (KM), a midwife, evaluated whether the exhaustive description was comprehensible from the perspective of reproductive specialists.

Similarly, the third author (HT), a breast cancer specialist, and the fourth author (KH), a hematologic oncology specialist, reviewed the description to ensure it accurately reflected the experiences of cancer patients, maintaining rigor.

We used NVivo (QSR International, Liverpool, UK), a software package for computer-assisted qualitative data analysis, to organize the data.

Ethical considerations

This study was approved by the ethical review board of Kanazawa University on July 6, 2023 (approval number 2022 − 364) and was conducted in accordance with the guidelines of the Declaration of Helsinki (2024) for research involving human subjects. Informed consent was obtained through both verbal and written explanations detailing the purpose of the study, the voluntary nature of participation, the right to withdraw consent at any time, the exclusive use of data for research purposes, and the anonymization of data within the bounds of preserving its integrity. Proactive measures were taken to reduce psychological burden.

These included assuring participants that they were not required to discuss any topic they found uncomfortable, with the researcher disclosing her own experience as a cancer survivor to build rapport and creating an environment that ensured participants’ physical and emotional well-being.

Furthermore, if a participant showed signs of physical fatigue or psychological distress, the interview was immediately stopped. The interviewer then notified the attending physician to ensure that an appropriate response was activated and, where necessary, facilitated a consultation with a specialist.

Rigor

We evaluated the trustworthiness of this qualitative research using key criteria: credibility, transferability, dependability, and confirmability [36]. To enhance credibility, attending physicians who had established relationships with participants explained the study and acted as intermediaries, fostering trust between participants and researchers. Interviews were conducted in private, comfortable rooms after a thorough explanation of the study aims, creating an environment where participants could freely express their experiences.

To ensure credibility, the analysis process and results were meticulously reviewed by the first and second authors and extensively discussed with the fifth author, an expert in qualitative research, until a consensus was reached. Narratives from participants who did not intend to have children provided “negative case elements,” which were analyzed to adjust patterns and develop themes that could account for a wider range of cases. Feedback from 10 out of 19 participants, including negative cases, confirmed that the comprehensive description derived from the data accurately captured their experiences, validating its authenticity. To enhance transferability, we provided detailed and rich descriptions grounded in participants’ experiences. For dependability, the research process was reviewed by qualitative research experts who were not directly involved in the study. To maintain confirmability, we documented decision-making processes and changes at every stage of the study—from planning and data collection to analysis—allowing readers to trace the research procedures. In addition, during data collection and analysis, the researchers recognized that their own perspectives and positionalities could influence every stage of the research. Accordingly, they consciously bracketed their preconceptions and made every effort to minimize bias throughout the research process.

Results

Characteristics of participants

The participants were 19 women between the ages of 23 and 47 years who had been diagnosed with breast cancer or a hematologic malignancy (leukemia or malignant lymphoma) between the ages of 18 and 39 years. Twelve participants had breast cancer, and seven had hematologic malignancies. All participants had undergone chemotherapy, radiation therapy, molecular targeted therapy, or hormone therapy, all of which are known to adversely affect reproductive endocrine function. Of the 19 participants, nine were childless at the time of their cancer diagnosis, and at the time of the interview, five of these women remained without children. One participant had undergone egg freezing before treatment. Interviews lasted approximately 30 to 130 min. Detailed participant characteristics are presented in Table 2.

Table 2

Characteristics of participants who experienced reproductive health concerns as female cancer survivors
Characteristic	N = 19
Age at the time of the interview (years)
≤29	2
30–39	10
≥40	7
Age at diagnosis (years)
≤29	6
30–39	13
Sex
Female	19
Cancer site
Breast	12
Leukemia	6
Malignant lymphoma	1
Treatment
Chemotherapy	15
Radiation therapy	6
Hormone therapy	5
Transplant	3
Molecular targeted therapy	1
Fertility preservation
Yes	1
No	18
Marital status
Single	3
Married	16
Presence of children at the time of cancer diagnosis
Yes	10
No	9
Presence of children at the time of the interview Yes	14
No	5
Race
East Asian	19

[Insert Table 2 near here.]

Main findings

Analysis of the data identified 11 themes and three clusters representing the lived experiences of female cancer survivors regarding reproductive health concern affected by treatment (Table 3). These clusters were named “Concerns about loss,” “Constraints imposed by social norms,” and “Coming to terms with concerns about loss.”

Table 3

Clusters and themes
Cluster	Theme
Concerns about loss	• Concerns about the impact of treatment toxicity on fertility • Concerns about treatment toxicity affecting the fetus • Concerns about inability to fulfill the maternal role • Concerns about inability to continue the family line • Loss of ability to conceive naturally
Constraints imposed by social norms	• Stigma associated with being the child-bearing sex • Stigma associated with expectations to prioritize the maternal role over fertility • Prioritizing survival
Coming to terms with　concerns about loss	• Defensive responses due to the severity of the impact • Concerns about loss of feminine identity • Finding personal meaning to accept the situation

[Insert Table 3 near here.]

Young women diagnosed with cancer were expected by those around them to sacrifice the life roles they valued and focus on treatment for survival. Within this context, they experienced “Concerns about loss” stemming from fertility impairment and its impacts on future generations while facing “Constraints imposed by social norms” as they were compared with healthy women of the same age and struggled with self-stigma. Recognizing femininity as an integral part of their identity, they attempted “Coming to terms with Concerns about loss” while facing cancer and undergoing treatment.

Concerns about loss

This cluster consisted of five themes: “Concerns about the impact of treatment toxicity on fertility,” “Concerns about treatment toxicity affecting the fetus,” “Concerns about inability to fulfill the maternal role,” “Concerns about inability to continue the family line,” and “Loss of ability to conceive naturally.” During cancer treatment, survivors were often forced to prioritize life-saving treatments at the expense of their fertility and sense of femininity. Their maternal health and natural reproductive ability were threatened by concerns about gonadal toxicity and teratogenicity, leading to a profound loss of security. Participants who already had children expressed additional concerns about no longer being able to fulfill their maternal role toward those children.

Concerns about the impact of treatment toxicity on fertility

This theme reflects how cancer survivors worried about ovarian dysfunction and losing the ability to conceive while focusing on cancer treatment in situations where avoiding treatment was not an option. Fourteen participants (B, D, F, G, H, I, J, L, M, O, P, Q, R, S) expressed concerns about these impacts despite feeling they had little time or space to fully consider their reproductive options amid the sacrifices demanded by treatment.

I was told about chemotherapy right away, but initially there was no mention of pregnancy. When a nurse said, “You might not be able to have children,” it came as a huge shock—I realized I hadn’t even thought about that possibility. (J)

Changes in menstruation, such as infrequent or ceased periods, were clear signs of fertility issues. Nine participants (A, B, D, F, G, M, O, Q, S) noted that these symptoms after treatment heightened their anxieties about infertility.

Because guidelines for hormone therapy to prevent breast cancer recurrence were extended from 5 to 10 years, diminished fertility became inevitable. The prolonged absence of menstruation raised fears of permanent infertility.

I can’t give up on having a second child. My periods have stopped, and I’ve heard that if you continue treatment for 10 years, most people don’t get their periods back. By then, I’ll be much older, so it might not be possible anymore. (D)

Concerns about treatment toxicity affecting the fetus

This theme highlights how concerns about toxicity extend beyond the ability to conceive, encompassing fears of fetal teratogenicity even after pregnancy is achieved. Cancer treatments such as chemotherapy, radiation therapy, molecular targeted therapy, and hormone therapy carry a risk of causing fetal abnormalities, leaving participants unable to feel reassured until they successfully delivered their baby without complications. Four participants (A, J, M, O) reported heightened anxiety and inner conflict, which deepened their sense of isolation due to worries about potential harm to their child.

When I found out I was pregnant, I asked my doctor if it was okay. I became pregnant during the period before it was confirmed that my cancer was completely cured. So, I asked, “Is it safe? Could there be any effects?” (A)

Additionally, participant O chose not to pursue fertility preservation, despite wanting children, to avoid the emotional conflict of potentially having to terminate a pregnancy due to treatment requirements.

I thought about what might happen if, by chance, I conceived using preserved eggs. If my cancer were to recur, and I had to choose between a new life and my own, I couldn’t bear the thought of having to make that decision. Even if there were only a one percent chance of that happening, I felt I had to give it up. (O)

Concerns about inability to fulfill the maternal role

This theme describes how having cancer made participants anxious about their ability to fulfill maternal responsibilities due to health, genetic, and social concerns. Eight participants (D, G, J, K, L, M, O, R) believed that mothers had a duty to maintain good health and give birth to healthy children. Their inability to stay healthy led to feelings of guilt about failing to meet their perceived social responsibilities to their children and husbands, which in turn eroded their self-esteem.

I just felt guilty all the time. I don’t even know why it had to be guilt—I understand when people say there’s no reason to feel guilty, that I didn’t choose to get this disease. I understood that perspective, but I still couldn’t feel anything but guilt. I even felt guilty about having given birth. (K)

Breast cancer survivors H and G expressed concern about passing the disease on to their existing children, whereas participant A, a leukemia survivor, worried (although without any clinical basis) about passing it on to future children.

I wonder if my child might inherit the same illness as me. Is it really okay? And especially if I have a daughter, she’ll have to deal with things like menstruation, with blood and all that, you know? (A)

Concerns about inability to continue the family line

This theme highlights how the loss of fertility due to cancer threatens the ability to give birth to future generations. Seven participants (A, B, E, F, L, P, S) had no children at the time of diagnosis and saw having children as a way to leave a lasting legacy, even though the likelihood of doing so seemed low. However, due to the challenges of pregnancy caused by treatment and their young age, some felt they lacked the emotional or practical capacity to consider pregnancy and childbirth as realistic possibilities

My parents died when they were still young, so… I wouldn’t call it leaving a legacy exactly, but I do want to have a child while I’m still young. I mean, this life my parents left me—it's a precious gift. I don’t have a partner now, so I have no idea when it might happen. But at the very least, I still have the desire to have a child someday. (B)

Three participants (E, P, S) felt pressured to continue their family line, even though they did not have a strong personal desire for children. Participant E, who struggled with an overbearing mother, wanted to break what she perceived as a negative chain of the family bloodline. In contrast, participant P took the decisive step of pursuing pregnancy, even after her father’s death. For many, the idea of generational succession carried deep significance and often triggered feelings of anticipatory anxiety.

My father had said he wanted me to have at least one child. But he passed away about a year before the baby was born. So, after I got married, I thought maybe I’d try to have just one. And in the end, I did have a child, so that’s one less thing to worry about now. (P)

Loss of ability to conceive naturally

This theme reflects the loss of the ability to conceive naturally, which is part of healthy women’s natural life. Cancer treatments that reduce the number of primordial follicles make natural ovulation and fertilization unlikely, requiring artificial intervention to achieve pregnancy. Fertility treatments can lead to a loss of bodily control and a heightened awareness of being unable to conceive independently. As a result, four participants (F, J, M, O) were deeply shaken by their inability to conceive naturally, which significantly undermined their confidence in their bodies and their sense of fulfilling their role as women.

When I started fertility treatment at 32, my ovarian function was already equivalent to someone over 45. The fertility specialist told me that because I had very few remaining eggs and low AMH levels, even though there are different steps in fertility treatment if we went through them all, I’d run out of eggs, and my periods would stop. So, they recommended skipping straight to IVF. I was completely stunned. (M)

Participant O, in particular, decided not to pursue artificial conception, feeling that doing so would undermine her trust in her body. She chose to accept that if natural conception was no longer possible, she would give up on having children.

I hit the so-called “second-child wall” and just couldn’t get pregnant. We had always thought it would be nice to have two children naturally. But when I considered what it would mean to go through cancer treatment—surgery, chemo, and everything else—and only try to conceive after all of that was over, I realized it just wasn’t going to happen. So, I didn’t even listen to the explanations. That was when I gave up, or rather, I came to terms with it and thought, “Yeah… it’s just not possible.” (O)

Constraints imposed by social norms

This cluster consisted of three themes: “Stigma associated with being the child-bearing sex,” “Stigma associated with expectations to prioritize the maternal role over fertility,” and “Prioritizing survival.” Participants felt their preferred way of life was suppressed by social expectations and rigid norms that assumed child-bearing and child-rearing to be natural roles for women. Even when participants shared societal values around pregnancy and childbirth, they experienced heightened distress when these could not be fulfilled due to the need to prioritize survival.

Stigma associated with being the child-bearing sex

This theme describes how women confronting fertility loss were acutely aware of being socially identified as the child-bearing sex. While the level of societal pressure and expectations from supporters varied, all participants were affected by these perceptions.

In particular, six participants (A, E, F, L, P, S) struggled with implicit judgments and reactions rooted in social norms, experiencing guilt and internal conflict over their inability to meet these expectations.

I think my parents and my partner’s parents probably expected grandchildren after marriage. I actually heard a bit from my husband—apparently, my mother-in-law had said she’d be willing to help, even financially, if needed. But… I don’t know if I even have the physical strength left anymore. And it’s also a bit hard for me to bring it up with her myself. (F)

I’ve always felt frustrated and annoyed by being boxed into societal norms like “women should be this way, men should be that way.” And after I got cancer, I really disliked hearing comments like “A 28-year-old woman would want to get married” or “would want to have children.” Sometimes, it felt like they were calling me defective, and that was incredibly stressful. (E)

Stigma associated with expectations to prioritize the maternal role over fertility

This theme highlights how cancer survivors who already had children felt pressured to suppress their desire for additional pregnancies due to both biological limitations from illness and societal expectations. Three participants (D, H, J) viewed household responsibilities and childcare as integral to their identity as mothers. Delaying the start of treatment for fertility preservation or interrupting hormone therapy to become pregnant could worsen prognosis. This clinical reality led some partners to express concern that, should the mother die, there would be no one to care for the child who still needed her. Consequently, they felt pressured to prioritize their maternal role, reminded of their social responsibilities as mothers, and constrained in expressing their desire for more children.

I was thinking about having a second child, so I wanted to preserve my fertility. But I felt like that was really selfish. Like I couldn’t ask for more. As an only child myself, I wanted to give my child siblings. But my husband told me he wanted me to focus solely on treatment so our current child wouldn’t feel lonely, rather than thinking about a child that might never be born. When I heard that, I thought, well, maybe he’s right. (H)

Prioritizing survival

This theme represents the distress of being in a situation where pregnancy/childbirth and protecting survival through treatment cannot coexist. Four participants (F, J, M, S) consulted with medical professionals about pregnancy and childbirth but experienced distress when they couldn’t receive answers that met their needs, as treatment was prioritized. Additionally, because medical professionals prioritize treating the primary disease, a situation arises where treatment and desire to become pregnant and give birth are not handled as compatible issues.

In this context, participant M felt particularly strong conflict about being “the child-bearing sex.” As a result, it became difficult for her to express her desire for pregnancy to her attending physician, who was focused on saving her life.

I kept negotiating with the doctor about wanting a second child but was repeatedly told, “Having one child should be enough.” I would say, “No, no, doctor, I still have frozen eggs,” but the doctor would say, “Just being able to get pregnant once while having this illness is amazing in itself, isn’t it?” This back-and-forth went on for several months. Then it became like, “Fine, do whatever you want.” When I expressed worry during my second pregnancy about what would happen if the numbers [residual leukemia cells] went up, I was told, “Well, you decided this yourself.” Perhaps the doctor felt tension because they’d never had a patient who resisted like this before. (M)

Coming to terms with concerns about loss

This cluster consisted of three themes: “Defensive responses due to the severity of the impact,” “Concern about losing feminine identity,” and “Finding personal meaning to accept the situation.” From cancer diagnosis through treatment and remission, participants experienced various ways of coping with the loss experience and tried to find meaning in their experiences. Losing fertility due to cancer treatment was equated with a loss of femininity, and while the impact on identity varied depending on how much individuals valued their femininity, all participants engaged in some form of meaning-making regarding their concerns about loss.

Defensive responses due to the severity of the impact

This theme describes how anxiety about the impact of cancer diagnosis and treatment on fertility was so overwhelming that participants struggled to process it as reality, even when provided with practical information. Thirteen participants (A, B, D, H, I, J, K, L, M, O, P, Q, S) received information about fertility alongside their treatment plans at the time of diagnosis, but the gravity of the diagnosis left them unable to focus on concerns about loss.

In particular, H, J, M, and O, who strongly desired to become mothers, experienced such significant shock that they could not process other information and entered a dissociative state. They reported that only after their condition stabilized and the initial shock subsided did they begin to experience infertility issues as a reality.

When I asked my doctor, “Is pregnancy possible?” he said, “It’s not impossible.” So I thought, “Oh, I can get pregnant—there’s still a chance for a baby.” I only remembered the good part. Apparently, the doctor also said, “In the future, you may need a hematopoietic stem cell transplant,” but I have no memory of that at all. So when I was told later that I needed more treatment, it was like a bolt of lightning from a blue sky. (J)

Concern about losing feminine identity

This theme describes how being unable to conceive made participants feel inferior compared to others in society, leading to struggles with self-worth. Female cancer survivors who developed cancer in the AYA years differ from adults aged 65 years or older, in whom cancer is more common, in that their point of comparison is typically a healthy peer group. Six participants (F, G, I, M, P, S) wrestled with the loss of their ability to conceive, give birth, and raise children with a healthy body. They felt they couldn’t fully come to terms with their situation unless they achieved the goal of having children.

Before, I felt like, “Why would he marry someone like me?” But after having two children, it’s like it’s wiped the slate clean—like marrying someone with an illness didn’t matter anymore. Until then, I tried to be the perfect, doting wife, but now I have no reservations about showing him my anger. I went from feeling guilty that he married someone with an illness to thinking that having one child cleaned the slate. (M)

Finding personal meaning to accept the situation

This theme explains how participants reconciled their concerns about loss while living with cancer. Thirteen participants (C, D, F, G, I, J, L, N, O, P, Q, R, S) experienced situations where they had no choice but to accept becoming infertile, even if they weren’t entirely satisfied with it. For example, C, N, and R viewed their loss as “complete” because they had already had the children they planned for. Six participants (D, F, G, I, R, O) resigned themselves to their reality, seeing it as fate. Others redefined the meaning of not being able to become pregnant, finding alternative forms of value or interpreting the experience as something that would shape the rest of their lives.

I want children, but sometimes I think just being alive is enough. That alone makes me completely happy. If I can keep going like this without recurrence, then I think that’s happiness in and of itself. (D)

It might sound strange, but going through chemotherapy was kind of like a substitute for pregnancy, something I could experience instead of having a baby. It became one of the things I’ve lived through. It’s not something everyone gets to go through. I feel like it’s going to have an impact on how I live the rest of my life. (L)

For participant E, who had never planned to have children, this became an opportunity to break free from a life course she felt was imposed on her:

I felt like I could break free from the set path of marriage and having children. That made me so happy. People say things like “cancer gift,” but that’s something only outsiders say—people who haven’t been through it themselves. But for me, I really feel like I received something. (E)

Discussion

This study elucidated the lived experience of reproductive health concerns among female cancer survivors who developed cancer during adolescence or young adulthood. These women faced an impossible choice between life and fertility. Even when they prioritized life, they remained burdened by concerns about gonadotoxicity and teratogenicity, threats to their maternal role and natural reproductive ability, and fears of severing generational continuity, all of which left them in a persistent state of unease. Previous studies have pointed to the loss of future fertility [37], the disruption of life as a mother [38], and feelings of guilt about losing the ability to carry on the family line [39]. However, this study is the first to clearly reveal a double bind, in which either choice—prioritizing life or prioritizing fertility—leaves behind persistent fears of loss. Prioritizing life may mean losing reproductive health, whereas prioritizing fertility may endanger one’s life and undermine one’s ability to fulfill the maternal role. In particular, the “concern about being unable to fulfill the maternal role” stemmed from a strong internalized sense of responsibility—that as mothers, they were supposed to give birth to healthy children. This included fears of genetic transmission. Previous studies have documented how female cancer survivors struggle with the inability to fulfill traditional gender roles [18]. However, this study reveals that, for these young cancer survivors, this conflict manifests as a profound sense of guilt. This guilt transcends the typical struggle to meet societal expectations and is uniquely tied to their experiences with fertility and its loss. While previous research on fertility preservation [38] has discussed awareness of social stigma, this study identifies a further dimension: the imposition of a “self-stigma,” whereby participants internalize feelings of guilt and perceive themselves as inherently flawed. This discovery is a crucial new contribution grounded in the lived experience of reproductive health concerns.

This study found that being informed of the risk of losing fertility often triggered emotional defenses due to the shocking nature of the diagnosis. As in previous research [38], participants struggled with the challenge of making decisions about cancer treatment and reproductive health almost simultaneously. Although prior research has emphasized the importance of husbands as primary decision-making partners [40], this study found that partners’ expectations surrounding the maternal role sometimes acted as a form of stigma that prioritized maternal responsibilities over fertility itself, thereby suppressing the survivors’ own hopes and preferences. However, this study found instances where participants felt unable to express their desire to have children, as they perceived doctors’ prioritization of life-saving treatment as inherently valid. This aligns with previous research that criticized some doctors for lacking empathy and maintaining pessimistic attitudes toward fertility preservation [37, 38, 41]. This study makes a novel contribution by highlighting how some patients may suppress their own emotions and desires because they perceive the opinions of their family or doctors as legitimate. As a result, they may accept decisions misaligned with their personal wishes without perceiving any overt sense of conflict. This finding suggests that those typically regarded as key advisors in decision-making—partners, family members, and primary care physicians—may not always serve as reliable sources of support when young women with cancer are navigating fertility preservation decisions.

Young female cancer survivors often experience stigma related to their reproductive role and live under considerable societal pressure to conform to traditional expectations. Previous studies have found that such pressures are common across life stages [39, 42, 43]. A literature review on Asian contexts [44] also points out that women who have undergone cancer treatment report social isolation and stigma and tend to be subjected to rigid gender roles. In Confucian-influenced cultures of China and Korea, family norms heavily influence individuals’ lives, particularly when it comes to expectations around fertility and gender roles [45]. For example, traditional values in China place a strong emphasis on bearing and raising children [46], perpetuating the expectation that women should become mothers. In Korea, women expressed guilt about asking their husbands to share household responsibilities [18], highlighting the deeply ingrained nature of traditional gender roles. In Japan as well, prevailing family norms that conceptualize the household as a communal unit tend to make it difficult for women to assert individual needs and preferences [47]. This study revealed that such societal pressures significantly constrain women’s decision-making regarding fertility. The guilt associated with concerns about not fulfilling the traditional maternal role and the expectation that they should prioritize motherhood over their own fertility limits their autonomy. These findings highlight how societal values can suppress women’s ability to make their own choices about their reproductive health. This underscores the need for a more holistic understanding of these women’s experiences, one that considers their whole life and supports more informed and personalized approaches to decision-making.

This study examines the journey of women from cancer diagnosis through treatment and remission, highlighting how central fertility is to a woman’s identity. It aligns with prior research [17, 48] in demonstrating that fertility loss can trigger profound concerns about losing an essential aspect of womanhood. In contrast to previous research that found pregnancy after cancer helped restore bodily trust [49], this study revealed a complementary perspective: the belief that “having one child cancels it out.” This suggests that social trust and self-worth can be restored only through the tangible achievement of pregnancy. Thus, recovering from identity loss necessitates not only regaining bodily trust but also restoring social and personal value. Regarding the process of finding new meaning, prior studies have identified ways of reconciling with infertility, such as believing one can still live a happy life without children, thereby decentering fertility from the essence of womanhood [37]. In contrast, the present study found that participants engaged in a process of “constructing meaning to convince themselves.” This meaning-making often involved reframing their loss as a life experience that could bring value or transformation to their future, or as an opportunity to break away from socially imposed constraints. Because this process of reinterpretation is linked to well-being, nurses involved in reproductive health support need to be attentive to how individuals make sense of their experience, recognizing that such meaning-making may contribute to the restoration of identity and personal value in diverse and personal ways.

Strengths and limitations of the work

This study’s strength lies in its focus on the lived experiences of cancer survivors, specifically regarding reproductive health concerns, offering valuable insights into how these issues intersect with their lives. By centering these experiences, the study highlights the need for comprehensive support that encompasses not only medical considerations but also broader lifestyle factors. Because the study focused on reproductive health, the age of patients referred by their doctor tended to be higher as a possible age for interview.

Although the study assumed that pregnancy and childbirth would be central life concerns, there were also participants whose mental health had been affected precisely because they could not identify with this normative life trajectory. Despite the limitations in the participant age range, the study successfully captured a diverse array of experiences among cancer survivors, providing meaningful insights into how they navigate concerns about reproductive health.

Recommendations for further research

Female cancer survivors are often pressured to make reproductive decisions that conform to societal expectations. This societal pressure, combined with the anxieties from their diagnosis and treatment, often leaves them feeling deeply insecure. To improve their reproductive health and well-being, it is essential to develop support systems that not only recognize the unique challenges these women face but also directly address how societal pressures affect their self-worth and decision-making.

Future nursing research should aim to uncover the unspoken anxieties women face regarding fertility after cancer, using this insight to support diverse life choices and enhance their quality of life. Developing intervention programs could be particularly beneficial. These programs should facilitate dialogue among cancer survivors, helping them to re-evaluate their values, adapt to their altered identities, and foster a stronger sense of self-acceptance.

Implications for policy and practice

Although advances in treatment technologies and assisted reproductive medicine continue, the increasing complexity of cancer treatment has placed a substantial psychological burden on young female survivors when it comes to making decisions. Decision-making and long-term support regarding reproductive health requires not only the involvement of spouses or primary physicians but also an environment in which survivors can safely and honestly express their true feelings.

Peer supporters are recognized as effective allies who can share the emotional distress and concerns associated with illness, helping to encourage self-disclosure [50]. In the United States, hospitals commonly have peer supporters stationed on site, with established systems for matching and conducting initial consultations. In the EU, online platforms that facilitate interaction among young cancer survivors are gradually being institutionalized [51].

However, peer support remains insufficient worldwide, including in Japan. There is a pressing need to establish comprehensive support systems, including the integration of peer support into outpatient consultation services, standardization of initial consultations, and the organization and empowerment of patient advocacy groups. Nurses, as advocates for patients, are well-positioned to act as intermediaries between survivors, healthcare professionals, and peer support networks. Their involvement can help to create more responsive, inclusive, and coordinated systems of care. To ensure that initial consultations are implemented universally, it would be effective to standardize referrals from primary physicians to outpatient consultation support and peer support services. To strengthen the foundation of patient advocacy groups, it is desirable to establish dedicated spaces within hospital grounds, ensuring structural connectivity with medical services. Creating safe, welcoming spaces for survivors to drop in can significantly enhance the effectiveness of rights-based support.

Conclusions

This study has explored the lived experiences of young female cancer survivors, specifically regarding the impacts of treatment on their reproductive health. It uncovered 11 themes organized into three clusters: “Concerns about loss,” “Constraints imposed by social norms,” and “Coming to terms with concerns about loss.” The emotional instability stemming from societal and familial expectations, such as shaken bodily trust and feelings of guilt over an inability to fulfill the maternal role, reveals the profound impact of these experiences on identity, particularly in relation to womanhood and motherhood. In order to survive treatment, participants were compelled to internally recalibrate their sense of identity and construct personally meaningful interpretations to come to terms with their losses. This study underscores the necessity of not only supporting women during treatment, but also providing long-term nursing support that continues well into survivorship.

Abbreviation

AYA, adolescent and young adult

Additional File

File name: Additional File 1.pdf

Title of data: COREQ checklist

Description of data: Additional file 1 includes a complete COREQ checklist.

Declarations

Ethics approval and consent to participate

This study was approved by the ethical review board of Kanazawa University (approval number 2022 − 364).

It was conducted in accordance with the principles of Declaration of Helsinki (2024). Informed consent was obtained from all participants prior to their inclusion in this study.

Consent for publication

Not applicable.

Data Availability

The data that support the findings of this study are not publicly available in order to protect participant anonymity and confidentiality, but will be made available by the corresponding author upon reasonable request.

Competing interests

The authors declare that they have no competing interests.

Funding

This study was supported by JSPS KAKENHI grant numbers JP 20K19167 and JP 24K13856.

Author Contribution

YO and KT made substantial contributions to the conception and design of the study, and to the acquisition, analysis, and interpretation of data. YO, KT, and KN were involved in drafting the manuscript or revising it critically for important intellectual content. YO, KT, HT, KH, KN, YM, and KM gave final approval of the version to be published and agreed to be accountable for all aspects of the work, ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. All authors read and approved the final manuscript.

Acknowledgement

The authors would like to express their sincere gratitude to all those who agreed to collaborate in this study and took the time to share their invaluable experiences with us.

Electronic Supplementary Material

Below is the link to the electronic supplementary material

Supplementary Material 1

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Yes