Thinking about the Future

For people living with the risk of hereditary cancer, decisions about having children can be extremely complex. People we spoke with described how elevated cancer risk impacted their decisions about marriage or partnership, having children and balancing concerns for the next generation against the need to manage their own health.

Deciding Whether to Have Children

The most fundamental question for some of the people we spoke with was whether to have children at all given the risk of passing on the affected gene. Matthew and his wife decided that “it wasn't going to stop [them] from … having children, as a result of the risk that they might someday have to go through the same thing.” They “didn't feel like the bad outweighed the good.”

 

Christian weighs the desire to have his own biological child against the risks of passing on Lynch syndrome.

Christian weighs the desire to have his own biological child against the risks of passing on Lynch syndrome.

Age at interview: 25
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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I identify as homosexual, so for me, having children is either going to be through adoption or through like a surrogacy. But if I choose to do it through surrogacy, I’m thinking, well, jeez, I don’t want to use my genes, necessarily, to create life in a child if that potential is there. But then I think that I do want a child that is, you know, mine. To think of it in those terms, I do want to continue my genetic code. And that's weird to think about, but I want to carry on my family, and what we've created, and it's kind of scary and sad to think that I might not be able to.

 

Heather envies people who can just have children without having to worry about genetic risk.

Heather envies people who can just have children without having to worry about genetic risk.

Age at interview: 33
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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And it’s then a whole other layer of added responsibility and decision-making that you come to that I just think the average person isn't aware of. And that's a struggle, right? I watched my friends get married and have kids, and none of them are having to think about, gee, should I be spending $50,000 to do this IVF with this PGD testing to avoid passing on this gene to my offspring that they would have a 50/50 chance of inheriting that could lead to them some day developing a cancer?

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There’s all kinds of factors as well with the risks I have for ovarian and endometrial. The recommendation is for me to have all of that, you know, surgically removed by the time I'm 40
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And that also puts a timeline on having family. Right? It makes you go, gee, I don't know that I would normally say, yes, I'm ready for children today. But if we want them, we should probably do it now, like get on top of it. So for my husband and I getting married at-- I was 32 and he was 34 when we got married. And it, I mean, it was right after our wedding became, all right, we need to now figure this out. What are we going to do? We need to do it soon.

Preventive Treatment and Fertility

Some of the people we spoke with had surgeries to reduce the risk of developing cancers for which they were at high risk. In some cases, this meant they would no longer be able to have children. PSM had a total hysterectomy in her early 40s. She and her husband had previously decided not to have children, so she was not badly impacted by the circumstance. Asante badly wanted to have a second child and was “terrified” at the prospect of hysterectomy. Eventually, she decided to “take a step back and realize that … you should be happy with the one child that you have.”

 

Eve was badly impacted when her doctor advised her to have a hysterectomy.

Eve was badly impacted when her doctor advised her to have a hysterectomy.

Age at interview: 40
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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I really, really freaked out, because, you know, you hear of women who are, like, “I knew I never wanted to have children,” and that's fine. I always wanted to have children. And I went through a real deep depression, because she was, like, “You have to figure out your fertility right now, because I want you to have a hysterectomy.” And my husband was kind of like, oh, you know, “I never wanted to have kids.” I'm like, “Thank you for telling me this. You know, we had been married for, like, three and a half years.”

Desire for Children and Personal Risk

Some of the women we spoke with, who wanted to have children, had to balance their desire for a family against the risk to themselves that this might involve. Becky had to stop undergoing regular screening while she went through IVF because “you're not supposed to do mammograms or MRIs if you might be pregnant.” Ronnie was aware that, “to have kids … I have to interrupt my … tamoxifen treatment, which is the only thing that can help me … with genetic breast cancer.” Heather wondered what “going off birth control and allowing [her] hormones to fluctuate” would do to her ovarian cancer risk.

 

Asante’s breast cancer spread to her lymph node while she was pregnant.

Asante’s breast cancer spread to her lymph node while she was pregnant.

Age at interview: 44
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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You know, in 2016, I was diagnosed with breast cancer. And it had traveled to my lymph node. Which was upsetting, because I did, you know, I couldn't do the physical screening because I had a baby. I was cooking a baby inside of me. And so that little sneaky bugger got in there somehow when I-- from the time that I was pregnant to the time that I gave birth to my son. And, you know, it could have-- we could all say that it could've been the hormones. You know, the extra hormones that you have when you're, when you’re pregnant.

Using Technology to avoid Passing on the Gene

One option that currently exists is to screen embryos for mutations to avoid passing on the affected gene. A number of the people we spoke to had tried this without success.

 

Heather explains how complex the process is and the ethical dilemmas that go along with it.

Heather explains how complex the process is and the ethical dilemmas that go along with it.

Age at interview: 33
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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We ultimately made the decision of, “Hey, if we're going to this length to do IVF, we might as well do PGD and we'll make decisions as they come. We will work through this.” So we are basically in the middle of it now. We've done one cycle of an egg retrieval. And, you know, it's a huge kind of emotional roller coaster, and takes a huge toll. We, you know, ultimately ended up with six embryos that were viable to be biopsied. And of those six, two of them were chromosomally abnormal and wouldn't have resulted in a successful live birth, was basically the way they put it. And then we had four left that were chromosomally super healthy, highly-graded embryos. And of the four, three of them tested positive for Lynch. That was a huge blow for me. I think I struggled with that a lot more than I expected. I thought, I'm going to be good with whatever. And you know to end up with one that didn't carry it, and these three that did, I ended up in this world of, “Well, if we started with the one that doesn't, and that either it takes and we have our first kid without, it means our second kid, we're, we’re giving them Lynch. It's no longer a 50/50. It's, we're having a kid that we know to carry this gene.” And you know, struggling with, oh, your sister doesn't have to worry about this, but you do. You know it’s, there was a big dilemma for me there. And then again, I really came back to this. I now feel like there's these embryos, and they're half my husband and they're half me, and they could make these people that are our family. And how can I let this gene that we have all managed to screen for and live with happily and healthily up to this point, all of us, prevent me from having that kid? So, you know, it’s been really a very, kind of just-- it's posed a lot more questions than I even ever anticipated.
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But if I had the opportunity to select away from Lynch, and my mom's mom could have done that, she wouldn't be here. And then my brother and I wouldn't be here if my mother had the choice to select away from it. And there's an even greater dilemma for me, really, when it gets into some of those decisions. And it can be really overwhelming.

Single People Thinking about the Future

Some of the people we spoke with are currently single and face particular challenges when they think about the future. Others who are now married or partnered recalled an earlier time when they, too, faced similar challenges. One of these challenges was having to disclose hereditary cancer risk to potential future partners. Ronnie “was already in [her] 30s getting a lot of pressure from [her] mom to … find a husband and start a family.” She worried that this would be very difficult because of her elevated risk of ovarian cancer. She “didn't think anybody would be attracted to that or would want that in their life.”  Chelsea wondered how to tell new partners about her cancer history.

 

Matthew remembers having to confront future risks when he was still very young.

Matthew remembers having to confront future risks when he was still very young.

Age at interview: 44
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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My wife was, we were together at the point in time that we went through this, so then it’s, are you comfortable-- and my dad actually gave my now wife an out. He's like, “You sure you want to marry this guy? Because there's a good chance your kids could have this.” You know, so having those conversations at 21 or 22, you know, are pretty significant life conversations to have.

For a number of people, like Briana and Lisa J., who are single and at elevated risk of ovarian cancer, adoption was an interesting option.

 

Lisa J. explains why the possibility of adoption helped take the pressure off.

Lisa J. explains why the possibility of adoption helped take the pressure off.

Age at interview: 54
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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But I always loved kids. And I always thought, well, you know, I think one day I can-- I'd like to have kids. You know, marriage, not marriage, as long as I afford them, I'm going to have kids. So then, I’m getting-- that's when the BRCA test came back, and it's like, oh, ovarian cancer. Oh, you have a higher rate for ovarian cancer.
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So I was like-- then I did some research into adoption, and they're like, you can adopt at any age. So all of a sudden, my pretty quiet biological clock just shut down. I said, “oh, any adoption, any age, as long as you're healthy or as long as”-- you know, whatever the criteria was, I met it. So I’m like, OK. So if something happens, because that was also very big for me too, I’m thinking “if this does happen to me...” That’s when I re-flash back to my mom, you know, and how I was left young. So I'm like, all right, let me take that off the table. I can adopt. And as long as I could, you know, provide or make sure they're OK, then I can have kids. But as far as, you know, having children biologically, it took the angst off the table, because I realized I had this BRCA gene. So then it was like-- then it became like a louder message in my head. I said, “OK, so I've got the adoption handled, you know, if I want to, that's an option.”  Foster, adoption. Like I found out all these different options. It's like phew.

Impact on the Next Generation

Some of the people we interviewed expressed concern about other impacts their hereditary cancer risk might have on future children.

 

Heather thinks about the potential financial burden on a child who inherits her condition.

Heather thinks about the potential financial burden on a child who inherits her condition.

Age at interview: 33
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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I look at the money that I've spent on my screenings just in the last six or seven years that I've been doing them. And I feel like a huge financial burden for my child, that I'm setting them up to enter a medical system where, sure, it may look different 18 or 20 years from now, but by the time they're in their mid 20s, they, I mean, you start paying for these screenings. And by the time you finish paying them off for one year, it's time to book them for the next year. Gosh, if I could spend the money now and avoid passing that on, that seems like a great option.

 

Cynthia remembers how hard it was watching her own mother deal with cancer.

Cynthia remembers how hard it was watching her own mother deal with cancer.

Age at interview: 50
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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If there was something that I could do to keep my children from having to go through what we went through helping my mom and watching my mom, not that we don't love her and didn't want to help her, but just how much it drains a family and how hard it was on her.
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So, it was my goal to do everything I could to make sure my children didn't have to go through what we were going through.
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And you think about everything your family's been through. And you think about what you don't want your children to have to deal with and suffer through.