Seventy-eight cancer survivors (61 women and 17 men), and 26 partners (13 women and 13 men), who accepted the invitation to take part in interviews were interviewed. We selected interviewed a larger number of women due to the broader range of experiences reported by women participants, which meant that it took longer to reach saturation, no new information in three successive interviews .
Talking but not always understanding: Couple communication about infertility concerns after cancer
The final overarching theme developed from the interviews and open ended interviews in was: Talking but not always understanding: Couple communication about infertility concerns after cancer. There were a number of subthemes, outlined in the thematic map (Table 2), and described in the analysis below.
“Naming the elephant in the room”: Positive couple communication about oncofertility concerns.
“We talk about everything”: Open and honest communication. The importance of “working together” as a couple to address cancer related fertility concerns - was acknowledged by both cancer survivors and partners. The majority of participants (survivors, 89.6%, n=415; partners, 95.1% , n=98) agreed with the survey item “My partner and I work well together handling questions about our fertility” (FPI). In the interviews and open ended survey responses, many participants emphasised the importance of open and honest communication with their partners, stating that they were “very open with each other” (Harry, survivor, 40-45 years, Hodgkin’s Lymphoma) and that they talk about “everything and anything” (Nina, survivor, 35-40 years, breast).
Both myself and [partner] do like to be honest and open with each other. We've been like that from the start, so, there was a lot of late nights lying in bed talking about it (Christine, partner, 25-30 years, haematological).
Good quality couple communication was described as something that occurred across the cancer continuum, starting “from the very beginning” (Christan, survivor, 35-40 years, testicular), “straight after he was diagnosed” (Pam, partner, 15-20 years, haematological), and “through treatment and recovering” (survivor, man, 35-40 years, testicular). It also involved a dyadic “back and forth, no argument, just discussion” (Victor, survivor, 35-40 years, leukaemia), where partners don’t “shy away” (Imogen, survivor, 40-45 years, breast) from difficult conversations. Participants also spoke about the importance of frequent, “in depth discussions” (survivor, woman, 40-45 years, breast), where couples “talk about everything” (Olivia, survivor, 20-25 years, lymphoma) in relation to their cancer and fertility experiences. Having a history within the couple relationship of effective communication was reported to have facilitated discussion of fertility issues after cancer:
We’d already talked about [fertility], before we got married even, so we were both on the same page about that. … When all the cancer happened to both of us, I found it, I found her easy to talk to about that sort of stuff. We didn’t really disagree on anything, except I felt like I needed a bit of time to recover from chemo and treatment before we moved to IVF, so, yeah, we didn’t really have any communication issues or relationship issues (Liam, survivor, 35-40 years, testicular).
Good quality communication and working together to address oncofertility concerns was identified as having had a number of positive impacts on couple relationships, which are outlined below.
Good communication leads to support, understanding and relationship growth. For the majority of participants, open and honest communication was reported to have contributed to feelings of support, empathy and understanding within the relationship. This was reflected in positive responses to the survey item “when I talk about fertility issues, my partner seems comforted by my comments” (survivor, 79.2%, n= 366; partner 81.6%, n=84). It was also mirrored in interviews and open-ended survey questions, with Laurence (survivor, 35-40 years, testicular) telling us his partner did “everything possible to make me feel okay and make me feel good…she wasn’t just saying it to make me feel happy…she was incredibly supportive” and Georgina (survivor, 40-45 years, breast) said, “we talk about it and he’s sensitive to my feelings…it’s not something he ignores or disregards.” For some participants, talking about infertility concerns also meant that there was a process of shared-decision making and support in relation to fertility preservation and treatment options. For instance, one survey participant said the, “discussion and reviewing the decisions we had made about fertility preservation, about the changes to my body, it felt good to get support for the issues at the time” (survivor, woman, 35-40 years, breast) and Julia (survivor, 25-30 years, Hodgkin's Lymphoma) said, “it’s been more the two of us, as opposed to just me.” Participants also described open communication about infertility as having reduced their anxiety and facilitated coping. Lara (survivor, 20-25 years, leukaemia) told us, it was “good to vent about it, rather than worrying about it on the inside” and Lily (survivor, 20-25 years, Hodgkin's Lymphoma), said that she “definitely feel[s] better having somebody to talk about it [with].”
In many instances open and honest communication about cancer and infertility was also reported to have facilitated relationship growth. Participants told us that a cancer diagnosis and subsequent conversations about infertility “brought us closer together” (partner, woman, 30-35 years, testicular), “confirmed our relationship even more” (Christian, survivor, 35-40 years, testicular) and “only made us stronger” (Monica, survivor, 25-29 years, breast), leading some to say “our relationship is amazing now… we couldn’t be happier” (Ava, partner, 30-35 years, testicular). Specifically, couples described that discussing a difficult topic like infertility, also “taught us how to communicate” (Denise, survivor, 30-35 years, breast). For example, Sandra (survivor, 30-35 years, breast) described that;
It’s helped open up a lot deeper dialogue of communication between us…as hurtful and emotional as it is, we can sort of rationally and methodically and logically talk about something. It’s actually strengthened that aspect of our relationship, our communication, our ability to talk thing through without clamming up or shutting down or someone walking out.
Open and honest communication through naming the “elephant in the room” (Polly, 30-35 years, survivor, breast) resulted in couples feeling that they had an understanding of what each person was going through emotionally. This in turn lead to greater feelings of support and comfort within the relationship, enhancing relationship satisfaction. For instance, Patricia (survivor, 30-35 years, breast) said, “we sort of comfort each other…support each other through the concerns” and a survey participant (survivor, woman, 30-35 years, breast) described, “my partner and I had several discussions about fertility issues and I feel like everything was out in the open and clearly discussed with both of us, so this was satisfying.”
Conflict and silencing of conversations surrounding cancer and infertility
“A source of tension and argument”: Fertility concerns as a source of relationship tension. The negative impact of oncofertility concerns on relationships was reported by a minority of participants (survivors, 8.4%, n=39; partners, 7.8%, n=8) who agreed with the FPI items that “because of infertility, I worry that my partner and I are drifting apart”, and that they could “imagine separating because of fertility issues” (survivor, 14.1%, n=65; partner, 19.4%, n=20). In some instances, relationship strain as a consequence of infertility was described as a “contributing factor” (Miranda, 38 years) to the “slow and steady decay of the relationship” (Shirley, 20-25 years). For other participants, infertility following cancer was explicitly stated to be “the main reason we broke up” (survivor, woman, 45-50 years, cervical/ovarian cancer).
Conflict in communication was identified as a factor in relationship strain for some participants (survivor, 7.3%, n=34; partner, 4.8%, n= 5) who agreed that “when we try to talk about fertility issues, it seems to lead to an argument” (FPI). Across open-ended survey responses and interviews a number of participants positioned the discussion of cancer-related infertility as a “source of tension and argument” (Survey, partner, man, 30-35 years, breast), a “cause of extra stress” (Survey, partner, man, 40-45 years, lung), something that “caused conflict” (Survey, survivor, woman, 35-40 years, breast) or a “massive fight” (Shirley, partner, 20-25 years, brain) within their intimate relationships.
For a number of younger participants, a cancer diagnosis and potential infertility issues as a consequence of treatment brought the discussion of childbearing up prematurely in relationships, which participants described as not “normal” and “unfair”. As Amanda (25-30 years, haematological) told us,
I’m a 26-year-old woman that doesn’t want to scare her boyfriend away by talking about babies now. It is quite upsetting that I have to think about these things and not just go through the normal process of the relationship and normal conversations that you’d be having. Not conversations, oh look, we might not be able to, or we might have to try alternatives ways we don’t know yet. So, that bit’s very difficult.
Similar sentiments were shared by Roxanne (20-25 years, survivor, breast) who said, “I do remember having a discussion with him early on, just saying it’s not really fair…just having to think about all of this [fertility], when we’re not ready, not at that stage…it kind of pushes your relationship forward at a really quick pace.” These accounts suggest that open discussion of fertility within couple relationships is not always a positive experience for cancer survivors and their partners, particularly if they are younger.
“We never talk about it”: Self-silencing cancer-related infertility concerns. Absence of discussion of oncofertility concerns was commonly reported as a means of avoiding a distressing issue. Many participants reported hiding their feelings about infertility to protect their partner (survivor, 32%, n= 149; partner, 31.1%, n= 32) agreeing with “I can’t show my partner how I feel [about infertility] because it will make him/her feel upset” (FPI). As a consequence, participants described self-silencing their concerns surrounding infertility, stating that they “can’t sort of talk about it” (Tyrone, partner, 30-35 years, bowel), “we’ve not actually spoken about that in much detail” (Claire, survivor, 30-35 years, cervical), or that they have “never really talked about how we each felt about it” (Sylvia, survivor, 55-60 years, kidney).
For many participants, couple communication about cancer-related infertility concerns was described as “painful”, “upsetting” and “raw”. As Fiona (survivor, 35-40 years, breast) described, “it’s a painful subject, we probably don’t talk about it all that often…we both feel the other is quite sad about the issue, perhaps we don’t want to broach it.”. Brienne (survivor, 25-30 years, breast) told us, “before my diagnosis [having a child] was something we discussed pretty often. I don’t talk about it now because it upsets me so I’m trying to avoid that.” Adam (partner, 35-40 years, cervical) told us that his wife wanted to try for another child, and he didn’t, and “I guess the way we [should be] dealing with it is talking, but no, we’re not dealing with it.” Due to the distressing nature of oncofertility conversations, some cancer survivors spoke about ending discussions about fertility when initiated by their partners, as a means of coping. Chloe (survivor, 30-35 years, breast) told us;
I just completely broke down, I couldn’t handle it…in the end I just ended up shutting down the conversation…it’s just one of those underlying things we don’t talk about at the moment…I have just kind of had to shut down, because I can’t cope with it.
Cancer survivors also described their partners avoided conversations around infertility because they did not want to add to existing cancer related distress. Lily (survivor, 20-25 years, Hodgkin’s Lymphoma) said her partner “wouldn’t want to talk about it” because, “he knew it was going to upset me” and Francesca (survivor, 25-30 years, breast) described that it was “really hard for him to talk about because he would see me so upset...he didn’t want to pressure me.” At the same time, cancer survivors spoke about avoiding discussion of infertility as they did not want to add to the burden their partners were carrying as a carer. Hope (survivor, 20-25 years, Hodgkin’s Lymphoma) told us, “I’d never want to burden him with any of my issues or anything, because I knew it was hard enough already as it” and Amanda (survivor, 20-25 years, Hodgkin’s Lymphoma) described, “it’s a case of yes, it’s on my mind, but I don’t want to burden him with it.” This meant that even when participants were “having an upset day” when thinking about infertility it wasn’t something they “liked to burden other people with” (Olivia, survivor, 20-25 years, Lymphoma).
A number of participants attributed the absence of discussion of oncofertility concerns to gender differences in communication, described by one woman as “just the typical woman/male thing” (Ava, partner, 30-35 years, testicular). Some women positioned themselves as being “over thinkers”, “worry warts” and “emotional”, while men were described as “inward”, “level-headed”, “strong” and “private”, meaning they were more reluctant to talk through fertility concerns. As Heather (survivor, 45-50 years, gynacological) told us,
When you have the cancer, you want to be able to discuss…fears around surviving and fertility…my feeling is that a lot of the men don’t want to talk about it…that stoic upper lip kind of thing.
Similar sentiments were evident in Sophie’s (survivor, 35-40 years, leukaemia) account, when she discussed doing “most of the thinking in our relationship…. I think out loud, he does his thinking in private which doesn’t make for a very two-way conversation about extraordinarily difficult topics”. At the same time, a number of men described oncofertility discussion as “uncomfortable”, meaning “I haven't really talked to anyone about it” (Kevin, partner, 25-30 years, bowel). Stuart (partner, 49-50 years, breast) acknowledged difficulties in discussing fertility with his wife, and said “I guess we really needed counselling, we had no counselling”. Absence of talk did not necessarily mean absence of support, however, as Brienne (survivor, 25-30 years, breast) said of her husband, “he usually doesn’t say a lot. I usually just get a very long hug and – and by the time that’s over with I’ve calmed myself down.” These accounts suggest that while communication about cancer and infertility may be avoided by both men and women, gendered expectations around what is considered appropriate communication within heterosexual couples may act as a further barrier to discussion of fertility concerns.
Misunderstood and unsupported: Consequences of constrained couple communication. A lack of open communication or poor quality communication was reported to have had a number of negative consequences for couple relationships. In the survey, 25.5% (n=118) of cancer survivors and 14.6% (n=15) of partners agreed that “my partner doesn’t understand the way fertility issues affect me”. A number of survey participants also agreed that “it bothers me that my partner reacts differently to our fertility issues” (survivor, 18.4%, n=85; partner, 26.2%, n=27). Consequently, a majority of survey participants (survivor, 65.9%, n=304); partner, 65%, n=65) agreed with the survey item “my partner and I could talk more openly with each other about our fertility issues” (FPI).
In the interviews and open ended survey items, participants described poor communication as leaving them feeling unsupported and alone. Melanie (survivor, 40-45 years, colorectal) described her partner as “not very good at talking about personal stuff, he’s very superficial in conversations” and as a consequence felt like she was “not getting any support.” Similar sentiments were apparent in Abigail’s account (survivor, 30-35 years, breast,) who described her partner as “incredibly unsupportive throughout the whole process” and that she “felt really alone during that period” of addressing fertility concerns. This in turn led to relationship difficulty and dissatisfaction, as described by one survey participant, “[I’m] unsatisfied with my husband because I think he holds back about how he really feels and it has caused problems in our relationship” (survivor, woman, 35-40 years, breast cancer).
The major breakdown of our marriage was his communication or lack of communication, whereas I needed to talk about all these things, it wasn’t something that he was willing, or capable of discussing…[it] made for a horrible experience, so much harder to get through having to deal [with it] by yourself (Charlotte, survivor, 40-45 years, breast).
In combination, these accounts suggest that a lack of open communication surrounding oncofertility concerns can lead to couples feeling unsupported, dissatisfied with their relationship and in some cases lead to relationship breakdown.
Managing infertility disclosure in new or future relationships
Difficulties associated with oncofertility communication were also reported to have negative implications for people who were not yet partnered, or early on in their relationship trajectories. Fear of rejection when forming new relationships was central to non-partnered participant accounts, particularly among younger cancer survivors who told us, “I am afraid of putting myself out there in case I get rejected” (survivor, woman, 20-25 years, Hodgkin’s Lymphoma) and “In my mind…if I do find someone and it gets to that time and I say, “Oh, I can’t have kids,” they’re just going to get up and go” (Ben, survivor, 15-20 years, testicular). Knowing when to communicate potential infertility when forming new relationships was another significant source of worry for a number of participants, as a survey participant reported, “it worries me. I question whether I should tell the other person and over think it and stress” (survivor, woman, 15-20 years, Ewings Sarcoma). Jasmine (survior, 15-20 years, haematological) said she “wouldn’t know how to bring it up on my own” and Amanda (survivor, 20-25 years, haematological) told us, “its’s not the greatest thing to want to bring up.” Some participants reported that they would “bring it up early” (Nathan, survivor, 20-25 years, Ewing’s Sarcoma) or that they would “tell it to him in the very beginning” (Zoe, survivor, 20-25 years, haematological), as a means to avoid feeling like they are “hiding something, I’m lying” (Tanya, survivor, 35-40 years, gynaecological). Others disclosed that it would “depend on how the relationship is going” (Lucy, survivor, 30-35 years, breast) or that it is “not something you do until you are serious” because “you have got to still remember it could be a big issue…a deal breaker” (Lara, survivor, 20-25 years, haematological). In this vein, some participants reported that they had not discussed fertility within a current relationship as yet, “because we are both quite young” (Roxanne, survivor, 20-25 years, breast), “I'm only 19, so fertility is certainly not something I bring up with potential partners” (survivor, woman, 19 years, Hodgkin’s Lymphoma), or because “we are not thinking about having children together” (Jasmine, survivor, 15-20 years, haematological).