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. Author manuscript; available in PMC: 2021 Oct 1.
Published in final edited form as: Support Care Cancer. 2020 Jan 28;28(10):4857–4867. doi: 10.1007/s00520-020-05307-1

Table 2.

Qualitative themes of family-building experiences after cancer.

Themes Subthemes (% reported) Definition Sample quotes±
Sources of Uncertainty Medical (100%) - Lack of knowledge about current fertility status and future reproductive potential
- Lack of knowledge about how to navigate the health system to obtain fertility care
- Unpredictable health future
“That’s my big thing right now … how do I know how long my fertility window is? Because I’m sure it’s been compromised in some form, but has it been hardly at all or, you know, is it looking like I have one more year of having good fertility to have children? And then from there, you know, what should I do? From there, what path should I take in like preservation or just planning it out?”
“So I still have a ton of questions about like what are the next steps. And at what point do I - when do I decide that I want to do this? … What if menopause comes early for me? Because I read somewhere that it could come early now that I’ve been through all of this. Just so many questions.”
“Every person’s case is different so it kind of just leaves me more confused and not knowing what kind of fertility specialist to go to or what test to request.”
“Trusting your body is pretty important and cancer is a huge trust breaker. I felt fine when I was diagnosed with cancer. I had no idea that there was anything wrong with me, so that breaks that trust relationship you have with your body… it’s so hard to think that it might not break again.”
Personal (100%) - Questioning changes in identity related to expectations for motherhood and family-building goals
- Questions about meeting important lifetime milestones, including family-building
“I don’t feel like a cancer survivor, because cancer took away having children. I can’t carry because of cancer. I can’t move past cancer or accept that I had cancer, because of everything it took away from me. I’m trying to figure that out.”
“It was worse than hearing the words, “You have cancer,” ‘cause it’s like you picture yourself as a young woman, “I still have time to build a family,” and now you might not ever be able to have kids.”
“People say cancer is the gift that keeps on giving… we have it ten times harder just to do something that ‘normal people’ can just have done no problem and it sucks.”
Social (100%) - Uncertainty about how best to communicate about fertility issues with partners, family, and friends
- Questions about how best to communicate about potential infertility with future partners
“I feel like going through this essentially alone. I have my husband who loves me but he doesn’t understand my individual experience, why sometimes I get so frustrated that we can’t have a child like someone normal.”
“It makes me feel uncomfortable about ever having that kind of discussion with someone when I am ready to start a family. It’s a situation that is very much outside of my control. And it makes me feel like I’m less than most just because of the fact that I probably can’t have a child.”
“If I survive this, how am I gonna tell my future partner, ‘Hey, there’s a high probability that I may never be able to bear a child?”‘
Financial (100%) - Lack of knowledge about potential cost of family-building
- Unsure of how to plan for the financial cost of family building
“What am I going to do next? If I have to use my eggs, how am I going to pay for it? I only took my eggs out; I didn’t make embryos. I’m scared that it’s going to be so expensive. And how much of a burden is that going to be on me?”
“Here you are, spending tons of money to retrieve your eggs and freeze them, and if you can’t carry… it’s emotionally damaging if you created embryos, and they’re sitting there, and you can’t even use them because you can’t afford surrogacy.”
“I’ve gone to see the general amounts of how much a normal treatment cycle would be and it’s a little overwhelming just to see that number. And especially overwhelming because I’m not even sure if that’s even an option.”
Cognitive and Emotional Reactions Cognitions (96%) - Belief that cancer had caused fertility problems and that family-building would be difficult, relating to distress
- Beliefs about time pressures associated with
reproductive timeline and impact on reproductive potential, connected to emotions of anxiety and fear
- Beliefs about definitions of womanhood and
motherhood in relation to fertility
“I remember breaking down and crying and I’m like this is poison, like, this is going to mess up my body, it’s going to prevent me from ever having kids.”
“If having a biological child is my goal, you know, literally the clock is ticking and if I don’t make that decision in a decent time period I’m not giving myself the best chance.”
“I’m older and I don’t have much time. And so it’s something that keeps me up at night. I think about it constantly. I really don’t think - I think about the cancer coming back, but at the end of the day the thing that really - the hardest part for me was my fertility and moving forward with that. Like I can deal with the cancer. I can go to chemotherapy, I can go to radiation, I can take hormones, whatever I need to do. I can do that. But the fertility thing is the thing that really got me.”
“Cancer took a lot of things from me, but it also took away a piece that is part of your womanhood.”
“It’s another thing to feel… like you’re not whole, like you’re not a complete woman, that you’re different than everyone else.”
Emotions (100%) - Anxiety and fear, based in beliefs that family-building will be difficult or unachievable
- Depictions of loss (or threat of loss) and subsequent feelings of stress, anxiety, sadness, and anger
- For a subgroup, lack of concern and distress, related to beliefs that family-building would be achievable
“I was scared… you see your friends building their families in kinda the ‘normal way’ and you know that’s not an option for you. What are my options? I don’t know my options. I was scared and incredibly sad and confused. I felt like I was standing in front of a hundred roads that I could go down and there was absolutely no indicator which road I should go down…I had really no direction.”
“It was devastating…to me the worst part of all of this was losing my fertility.”
“I’m a minor, so I know that by the time I’m thinking about having kids and family-building there will probably be more options for me. I have looked on the news and seen uterine transplants and things like that.”
Coping Behaviors Problem-solving (76%) - Proactive efforts to manage distress and uncertainty, including seeking information and support “I started looking at other options to figure out more about fertility because I realized that it wasn’t necessarily going to be something that was going to be easily accessible through my own doctor team.”
“They have in-house counseling, and I started to go to those counseling sessions, because it helped me understand cancer and infertility, and what was the best option for me.”
“I became part of a domestic adoption group on Facebook, and just being able to hear stories from other women and other couples who are going through something very similar to us is just a great resource and it’s a great outlet too emotionally.”
Emotion regulation (48%) - Strategies to manage internal states and negative emotions, so as to avoid feeling overwhelmed and to facilitate emotional recovery after cancer
- Efforts to accept or adjust to uncertainty; often in the context of adjusting to the cancer experience as a whole
“I feel a little bit anxious about it because it’s still sort of up in the air and unknown. I’m trying not to let it overwhelm my emotions… I mean, if it happens, it happens. Great. And if it doesn’t, then we’ll figure something out, right?”
“I’m still trying to process what having gone through treatment means for my future and trying to get my body back to being as fit as it was before… I’m still trying to focus on healing and just getting back to myself.”
Decision making about fertility and family-building Actively pursuing an option (20%) - Decisions made, reconsidered, and reframed to account for new information and shifting priorities
- Reflection on family-building decisions, amidst ongoing emotional processing of cancer effects on fertility
Note: participants described decision making processes, though parenthood had not been achieved yet.
“It’s an insane amount of money for anybody. I know there’s other forms of building your family, adoption is a big one. I can’t emotionally pursue adoption, because I have these biological embryos. I think making sure that I can try to use these embryos is more mentally healthy for me than whatever financial risks that I take.” (decision to pursue IVF with frozen embryos)
“I’m excited to adopt, but I think that it’s always a piece that’s going to make me really sad, and it’s always going to be hard. If you’re sitting at a baby shower when someone else has a belly and you never got to have that, it’s always going to be a hard topic.” (decision to pursue adoption)
Not engaged in decision making (80%) - Delay and avoidance of considering decision options due to uncertainty, feeling overwhelmed or unable to manage negative emotions, and/or needing to recovery emotionally from the cancer experience
- Decisions delayed, often despite concerns that action was needed
“It’s a little upsetting because I don’t know and the unknown is a little scary. And having to make the decisions having to see a doctor is a scary step anyway and then having to find out the answer is kind of almost a deterrent in a way like I don’t want to go because I’m afraid to know but I feel like I should go for my own mental health.”
“I have huge concerns. If I had trouble getting pregnant before what makes me think that it’s gonna be easy after. How stressful is the process gonna be? How much time and effort and emotion can I really have to spare to put into the process of getting pregnant.”
“[I’m feeling] a little overwhelmed because I’m not sure where to start.”
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Some quotes were double coded and represent more than one theme/subtheme.