Study population

This research was conducted in 2018 and 2019 as part of a cross-sectional, qualitative study led by a sociologist in collaboration with a multidisciplinary team of physicians specializing in oncofertility, in partnership with an oncology unit.

The inclusion criteria targeted women and men who were adolescents and young adults (AYA) at the time of their cancer diagnosis, who had been in remission for at least one year and who have reached the age of majority at the time of interview. The AYA category was defined broadly, ranging from 13 to 35 years old, in line with recent studies—some of which begin this category at age 13 [32], while others extend it up to 39 years old [33–37]. This wide age range was chosen to form a relevant cohort, particularly considering the growing trend of delayed parenthood [38], and to include individuals who did not have children at the time of their cancer diagnosis, for whom fertility becomes an even more pressing concern after treatment.

Three cancer types were selected for inclusion: breast cancer, testicular cancer, and malignant hematological diseases. We focused on three types of cancer in order to maintain a certain level of homogeneity in both the types of cancers and the oncology and oncofertility care pathways, allowing us to better identify the specificities arising within these different journeys. We chose to concentrate on hematologic cancers, which particularly affect young people, as well as two more gender-specific cancers—testicular cancer and breast cancer—one of which (breast cancer) can be hormone-dependent in women, in order to take into account how gender and hormonal factors may influence the experience of illness, fertility preservation, and reproductive decisions.

Participants were recruited between 20 November 2018 and 9 December 2019 through various channels, including oncology and reproductive medicine departments, snowball sampling, and outreach via public testimony calls. In the medical reproduction department, an on-site presence, combined with the help of the department’s secretaries and doctors, enabled this research to be systematically presented to eligible patients, who were systematically offered an interview, to be conducted at a later date if they so wished. In the oncology department, in partnership with the AYA department, an email presenting the research project and a call for participation were sent out to their email database. These two recruitment sources were the main ones, and in addition, word of mouth and the snowball effect helped expand recruitment beyond the locality of the two main departments, allowing for the consideration of any local specificities in the care provided. These recruitment methods and channels combined ensured a greater diversity of respondent profiles in terms of place of residence and care.

In-depth, semi-structured interviews were mainly conducted face-to-face, or exceptionally by videoconference or telephone. Interviews lasted between 1 and 3 hours.

The first part of the interview guide focused on sociodemographic questions (age, gender, marital status, education, profession). The next sections were structured chronologically. A second part addressed the participants’ personal, marital, and professional history up until the cancer diagnosis, as well as the possible emergence of a desire for a child during this period. The third part dealt with the cancer diagnosis, its treatment, experiences with medical care, including fertility-related issues, as well as the impacts and concerns in professional, social, family, and marital life. The fourth part of the interview focused on experiences after the completion of cancer treatment. Questions revisited the potential consequences of cancer and its treatments afterward, regarding fertility status (whether gamete preservation was performed or not, and whether fertility was preserved after treatment, if that information was known), and the experiences related to these aspects. Other questions then addressed the marital history, professional situation, desire for children after the end of treatment, and any parental project that was being considered, underway, or completed.

All interviews were audio-recorded, transcribed verbatim, and anonymized to protect participants’ privacy.

Analysis

The interviews were analyzed using an inductive approach, commonly referred to as grounded theory [39]. We employed a combination of social science methods, including longitudinal interview analysis and cross-sectional analysis. Longitudinal interview analysis focuses on identifying the individual processes and organizational patterns within each interview. In contrast, cross-sectional analysis examines the interviews across participants to identify common themes. These two analytical methods are complementary; together, they allow us to capture both the unique aspects of individual narratives and the broader, shared themes across respondents’ experiences. By combining these methods, we were able to highlight both the similarities and differences in the participants’ discourses, while also respecting the distinctiveness of each participant’s account.

Ethical approval

This study was approved by the ethics committee of Aix-Marseille University (France) on November 13, 2018 (Approval Reference: 2018-08-11-011). A written information sheet was provided for each participant to read, and was also explained orally. A written consent form was also distributed and explained orally. The persons contacted had to read it, approve each of its clauses and sign it before participating in the study. The consent form to be signed specified that the person had read and understood the information sheet presenting the research and its procedure, that he/she agreed to participate, that the interview would be recorded, and that he/she understood that he/she could interrupt the recording or the interview at any time without any consequences, not to answer any questions if he/she did not wish to do so, that the data were anonymous and protected by the law on the protection of individuals and liberties, and that he/she could contact the investigator at any time to ask questions or withdraw from the study if he/she so wished. All the data collected was kept by the research investigator on a secure password-protected area. The data stored was all anonymized, and the ethical protocol approved by the committee stipulates that it must be destroyed 5 years after the end of the study. The data presented here have been pseudonymized, and all the first names appearing in the results section are fictional.

1. Lack of attention regarding infertility risks before cancer treatment

Not all respondents had the opportunity to preserve their fertility before undergoing cancer treatment [Table 1]. This variation was influenced by both gender and the timing of their cancer diagnosis. For instance, among the men interviewed, the only participant who did not benefit from fertility preservation (FP) had been diagnosed with lymphoma 22 years earlier, in 1997, when fertility preservation was not yet a medical or social concern. In contrast, the 12 other men, all diagnosed more recently (between 2014 and 2018), had access to FP. We will not explore further the experience of this one man participant, who was aware of his infertility from the outset, understood the reasons for the lack of FP at the time, and did not express particular concern during the interview. In addition, the greater number of men than women using FP in our sample [Table 1] can be explained by a point that is well documented in the literature, namely that gamete retrieval is easier for men than for women in terms of time, technique and invasiveness for the body [40]. As regards the use of FP by the women in our sample, the situations are indeed more varied and complex.

Among the 18 women interviewed, 10 had undergone FP at the time of their cancer diagnosis (between 2009 and 2017). Among the 8 women who had not had FP (diagnosed between 2001 and 2018), 6 were never offered the option, 1 attempted FP unsuccessfully, and 1 did not undergo chemotherapy or radiotherapy (only surgery) and was not offered FP for that reason. Interestingly, two of the 6 women who had not been offered FP were later able to preserve their fertility post-treatment.

In this section, we focus on the experiences of the 6 women who were not given the option of FP at the time of their diagnosis. The aim is to better understand how they experienced the absence of this option and the impact it had later on.

Of these 6 women, 2 were diagnosed before 2011 (in 2001 and 2004), at a time when oocyte vitrification was not yet allowed in France. Since 2011, the authorization of oocyte vitrification has significantly increased the availability of FP for women facing cancer, especially single women who could not benefit from embryo cryopreservation. These two women had the earliest cancer diagnoses, with Elina being the youngest, diagnosed at 13 years old. The other woman was 24 years old at the time of diagnosis. The absence of FP options for them was primarily due to the timing of their diagnoses and the limited awareness and technical options available in France at the time.

When discussing infertility in the interviews, these women expressed strong regret not only over the lack of FP but also over their initial ignorance of the effects of cancer and its treatment on their fertility. Elina, now 27, explained:

“The early menopause thing, I knew about it right there, in August. I never knew before. But it wasn’t a big surprise... You think that if chemotherapy defeats cancer, it must affect other parts of the body. So when the doctor told me, it was a surprise in that I didn’t expect it this year, but it wasn’t... either. But it’s still a consequence, and it’s thirteen years later. It’s not a consequence that happens thirteen years later; it’s something that was caused from the beginning, but I only learned about it thirteen years later.”

The four other women who had not been offered FP and were diagnosed after 2011 were unclear about the reasons for this oversight, except for Aïssa, who was initially treated in Algeria. She was not surprised by the lack of information, noting that there was little communication or education regarding cancer treatments in the Algerian department where she was treated. The three other women, treated in France at ages 28, 31, and 34, were childless at diagnosis and wanted to have children. They were also left without an explanation for the lack of fertility preservation. What they lamented most was the absence of information on the risk of infertility after treatment. Martine, 34 years old at the time of her leukemia diagnosis in 2012, now 40 and childless, shared:

“It’s been pathetic. Now, really, it’s... I hope it’s better now. I was never told that chemotherapy would make me sterile, that it might cause infertility either because of the treatment itself or the chemotherapy – I had zero information, nothing at all.”

All 6 women who were not offered FP had one thing in common: they were not informed about the infertility risks linked to their cancer treatments, and this late realization left them ill-prepared. For some, like Elina, this information came several years after treatment, at a time when they were hoping to move beyond the cancer experience. The need for fertility assessments, subsequent treatments for preservation, or the discovery of infertility became an additional and unpleasant challenge that could have been anticipated.

Women who had access to FP before their cancer treatments were spared these post-cancer medical procedures (such as ovarian reserve assessments, ovarian stimulation, or oocyte retrieval) and the anxiety surrounding potential infertility. However, the two women who were able to undergo fertility preservation after treatment found this option to be both highly beneficial and restorative, as it addressed an important unmet need. These two cases, while exceptional within this study, underscore the importance of offering fertility preservation post-treatment when the individual’s fertility is still viable and when it was not possible beforehand.

2. Fertility preservation independently of a parental project after cancer: Unintended consequences

Among the 31 individuals interviewed, ten women and twelve men were able to undergo fertility preservation (FP) during their cancer treatment. All of the men had sperm freezing, while the women used a variety of techniques: five had oocyte vitrification (one of which involved immature oocytes), three had ovarian tissue cryopreservation, and two had embryo cryopreservation.

Of the ten women who underwent fertility preservation, five became mothers after treatment: three through spontaneous pregnancy, one via IVF with egg donation (because the post-chemotherapy cryopreserved ovarian tissue contained no follicles), and one through IVF with their frozen-thawed oocytes. One other woman was pregnant at the time of interview, after IVF. Among the four women who were childless and not pregnant, two were undergoing IVF for infertility, and two were single (aged 29 and 32) with no current desire for children.

Among the twelve men who underwent FP, one has had a child after IVF, three were expecting a child (two after IVF with cryopreserved sperm and one after spontaneous pregnancy), two were trying to conceive with their partner (under ART), and six, aged between 22 and 30 and single, were not planning to have children at the time of the interview.

The experiences of these women and men with fertility preservation varied hugely. Some considered FP as a positive and empowering step that helped them move forward in their post-cancer lives. However, others experienced it as a source of new challenges and questions. This section focuses on the latter group. Our findings suggest that these more negative experiences are closely linked to the question of whether a parental project is a current or future project. The respondents who were not involved in a parental project and were single (two women and six men, aged between 22 and 32) expressed the most concern. Their testimonies can be gathered into three main themes: a/ The challenge posed by a known infertility and the need for ART in future relationships; b/ Complain about the annual letter from the fertility clinic, following cryopreservation, which asks young, single individuals without children to decide the fate of their cryopreserved gametes—an “impossible choice” for them; c/ The lack of long-term counseling regarding fertility after cancer, which leads to uncertainty and, at times, misconceptions, resulting in unnecessary stress.

3. Palliating infertility consequences in the context of a parental project: Beyond the sole issue of procreation after cancer

Among the interviewees who had undergone fertility preservation (FP), some were either planning to have children or had already become parents by the time of the interview. For these individuals, FP was a positive step in their post-cancer pathway, helping them move forward in various ways and at different stages of their recovery.

Among them, Robin’s testimony illustrates a situation specific to men who, after cancer, experienced infertility but were able to preserve their fertility and later engaged in a parental project:

“I feel like the medical profession saved me. To save me, they had to sacrifice certain functions... but I accepted that. Ultimately, I’m fortunate to have sperm cryopreserved, which allows me to have children without needing to rely on an anonymous donor.” (Pierre, 28, Hodgkin’s lymphoma at 27, sperm cryopreserved before chemotherapy, in a relationship, childless, azoospermia post-cancer, planning for parenthood)

For men, known or presumed infertility cancer-induced can be effectively addressed through the use of cryopreserved sperm. This option provides reassurance, ensuring the possibility of future procreation and maintaining a genetic link to any future children.

The experience of infertility among the women interviewed, particularly those with a parental project, was more complex. The “reparative” aspect of using cryopreserved eggs or ovarian tissue added layers of difficulty. One such example is Mounia, 34, who was diagnosed with Hodgkin’s lymphoma at 30. She underwent ovarian tissue cryopreservation prior to chemotherapy. At the time of the interview, Mounia had been in remission for three years and had recently undergone an ovarian tissue autograft that restored her endocrine function. She and her partner, who had been married for two and a half years, were actively trying to conceive with IVF:

“What hurt me was that, during that whole period, I didn’t receive hormone treatment. I don’t know if it was a choice or if there were other options. I didn’t have periods at all. It felt like I wasn’t really a woman anymore; I had nothing. But when I came here [to the ART clinic], Dr. X gave me hope. She was the one who really cared for me. When I started my first hormone treatment, and my periods came back, I was so emotional—I thought my ovaries had come back to life. I cried tears of joy.” (Mounia, 34, Hodgkin’s lymphoma at 30, married with a child project, premature ovarian insufficiency (POI) after treatment, undergoing ovarian tissue transplantation)

In Mounia’s case, as in several others, infertility due to POI (Premature Ovarian Insufficiency) is not resolved by the presence of cryopreserved gametes or tissue. The absence of menstruation, the climateric syndrom such as hot flashes and vaginal dryness, sexual dysfunction, and other side effects induced by estrogen deficiency can complicate the path after cancer and cause additional challenges to conceive child:

“I don’t remember how long it lasted, but at some point, my periods stopped and then I started experiencing menopause symptoms—hot flashes, dry skin, dryness of the mucous membranes—classic signs of menopause. So, I saw Dr. X again, and she gave me everything I needed to counter those symptoms—hormones treatment, to restart my cycle, because I was still young, just 25. For her, it was out of the question for me to stay in this condition, especially since we wanted to have children. It was essential to find a solution.” (Laura, 31, Hodgkin’s lymphoma at 24, in a relationship with two children aged 2 and 3, cryopreserved eggs prior to cancer treatment, conceived spontaneously despite POI diagnosis, undergoing Hormonal Replacement Therapy (HRT))

In Laura’s case, as with Mounia’s, the path to parenthood led them to consult an oncofertility specialist years after their cancer treatment had ended. It was within the framework of this parental project that solutions were offered to mitigate the effects of estrogen deficiency and infertility caused by POI since years.