Talking with Family

When cancer risk runs in families, many people are affected.  One person’s genetic test results or cancer diagnosis, for example, can have an impact, large or small, on relatives who are biologically related.  Whether and how information and experiences are shared in families can matter a lot both to people who have confirmed increased cancer risk, and to people who had not yet been thinking they might be at increased risk. This part of the website summarizes what people we interviewed had to say about the conversations around risk that happen, or don’t happen, in families. Our Resources and Information section has links to websites that are useful for people thinking about how best to discuss genetic risk with their family members.

Sharing the News

People we interviewed described a wide range of approaches to communicating with blood relatives. Some people, like Terry and Bobbie, felt sharing information could be lifesaving and keeping secrets as harmful; they “tell as many people” as possible, “every last one.” Carrie and Peggy described sending letters, using a template provided by genetic counselors, to various relatives. Bobbie made some key calls and requested those she called pass the information on to others. Susan’s doctor helped her contact some physician relatives.

Most people understood that sharing information about cancer risk would have an emotional impact both during and after their conversations. Many people spoke about what it was like to delay telling family members, meanwhile “pretending nothing’s wrong” so as not to ruin happy occasions. Kerry said some family members “want to know, but they at the same time, they don’t.”  Lori’s family members, who she said talk openly about a lot of things, "actually [have] a Facebook page” to help keep everyone in touch and supporting one another around cancer risk.

 

Asante finds conversations difficult, in part because she worries her family members won’t think their own genetic testing will be affordable.

Asante finds conversations difficult, in part because she worries her family members won’t think their own genetic testing will be affordable.

Age at interview: 44
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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So when I was diagnosed in 2016, it was a huge shock to my family. They were scared. They were unaware of the new technology.
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Yeah. Were those conversations hard for you to initiate?
 It was difficult, because I didn't want them to think that just because I got cancer, you're going to get cancer now.
Right.
You know? And that was the biggest thing. So it was-- I had to strike a balance on how to have that conversation. You know, one of it was-- the woman at the local hospital, I’ll, you know, I had told them her name. And I said, you know, in fact, she said that you don't even have to go through the hospital. They have a laboratory that is so much cheaper. So I use the it's not expensive tactic.
Right.
 Because everybody thinks oh, if I have to get this genetic testing and my insurance doesn't cover it because most times insurance don't cover these things. So I went at it from this is a laboratory that you can get the testing back in six to eight weeks. And it's affordable, so you should do it.

 

Amy says her family tends to avoid talking about cancer risk and cancer.

Amy says her family tends to avoid talking about cancer risk and cancer.

Age at interview: 30
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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So cancer, the C word, is not one that we like to bring up in the house very much. We really don't talk about it much.
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And my mom worries about everything, so I know she just, you know, is beside herself when she found out I tested positive. But she also was one of the first ones that mentioned to me, you know, “You know.” You're one step ahead of the rest of us. You know, you're aware of this. This is huge. And I was like, “You're right.” After that, I really just try not to stress about it, but we don't-- it doesn't ever really come up in family, family functions and stuff like that. Unfortunately, I don't get to see the side of my family that it has, you know, directly affected. Like my aunts as much, they don't live around here and my cousins. But it is, it really doesn't come up that often. It's just something you don't really want to have to talk about, but, yeah. They've been very supportive.

 

In Cynthia’s family, cancer risk and cancer are regular topics of conversations – like the weather.

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In Cynthia’s family, cancer risk and cancer are regular topics of conversations – like the weather.

Age at interview: 50
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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You know, it's interesting because the entire thing…has been a large conversation piece in our family. And just being more preventative and proactive in trying to beat the odds. And so it's, it’s something that we talk about frequently, actually. And what we're doing, each one of us is doing to benefit ourselves. My sister, actually, is a chemical engineer and she's involved in a little bit of research as well. So just sharing information and having the conversations at the family gatherings with my daughter and my nieces and that next generation so that they have a better understanding of what they should expect, when they need to start. Because they're not necessarily going to go out and look for that information on their own. They're still young and they're not thinking about it. But they do need to start grasping the idea, coming to terms with it, and understanding how they can, you know, do certain things for preventative. And it's our job as parents, as aunts, to take the time to share that and hopefully make a better life for them where they're not struggling as much as we did. And so, we do. We have conversations very frequently. It's almost like "how's the weather" in our family, as odd as that may seem. But it's there. It's a reality. You've got to have it. You've got to support each other. We're a very, very loving and supportive family. 

Many people tailor their approach to talking about risk in different ways for various family members or because of circumstances. As Joan puts it, conversations about risk in her family “run the full gamut” from comparing notes to not talking about it at all. PSM said she talks with some close relatives but others are “in another world” and not reachable.  Cynthia, Jack and Thomas all noted that they worry more about female than male relatives.

 

Maria H. says she immediately called a close relative back in Mexico who also had a breast cancer diagnosis with a very different set of experiences than her family in the United States.

Maria H. says she immediately called a close relative back in Mexico who also had a breast cancer diagnosis with a very different set of experiences than her family in the United States.

Age at interview: 54
Cancer-Related Experience: Cancer
Type of Inherited Risk: Family history of cancer
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And she told me, we love you a lot. Give this treatment your all. Smile. Give thanks. Be very positive because you will come out ahead. And yes, I went ahead in Mexico with situations, with a medical system with fewer resources, less technology or maybe the technology was similar because the hospital was a center of high classification. But the resources aren’t the same. The number of people that needs it is incredible.
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She took a bus. It took three hours by bus to take her to a hospital and bring her back after a chemotherapy to the village three hours to return on the bus. And it was, well, a very different situation than mine. I really couldn’t complain. Rather, I admire her more than complaining. I can’t, I can’t do that.


Y me dijo a mí, te queremos mucho. Échale muchas ganas al tratamiento. Sonríe. Da las gracias. Sea muy positiva porque vas a salir adelante. Y si yo salí en México con situaciones con un sistema médico con menos recursos, menos tecnología o tal vez la tecnología sea tal vez similar porque era un centro de clasificación alta el hospital. Pero los recursos no son los mismos. La cantidad de gente que necesita es increíble.  
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Ella tomaba un camión. Duraba tres horas el camión para llevar a un hospital y regresarse después de una quimioterapia al pueblo tres horas de regreso en camión. Y era, bueno, una situación muy diferente a la que yo - realmente no me puedo quejar. Más bien la admiro a ella más que quejarme. No puedo, no puedo hacerlo.  

 

In Ronnie’s family, conversations eventually made clear which side of the family actually has high genetic risk for breast cancer.

In Ronnie’s family, conversations eventually made clear which side of the family actually has high genetic risk for breast cancer.

Age at interview: 40
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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Yeah. Just more that it was my mom was sure it wasn’t genetic, but she said, you know, you should do it anyway. Because I think she was a little bit concerned. ‘Cause when I got it young-- and then people-- and then when doctors asked, “oh, is there a family history?” I said, well, my mom had it. And so, I think she was uncomfortable with kind of being blamed for it in a way, that she gave it to me. But I mean didn’t see it that way. Nobody wants to give this to anybody else. But yeah, I think she was always uncomfortable-- I think she was uncomfortable with that. And she thought it would be a good idea just to kind of prove that it didn’t come from her.
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When I was diagnosed, and going through treatment, and all that, my father was starting to die. And so that survey for the genetic testing, it was asking some questions about his side of the family. And so basically while he was in hospice on his deathbed, I had to ask him questions about his side of the family. He got really upset. He didn’t want to talk about it. But he gave me the information. And then, because I was trying to ask my mom, I didn’t think it was a good time to ask my father that information. And she said, no, you should ask him. But he wasn’t well. I went and asked him anyway. And then he wasn’t really happy about it. And then I was sort of angry at-- I was a little upset at him. I mean I understood like he just wasn’t feeling well. But also, like he was not too tired to tell my mom and I to do other things. And I thought, you know, if I was dying, I would want to help my kid—my child—in whatever way it’s possible. Even if it’s painful, if this is something that can help me in my treatment, like I would want to do that even if I was dying. So, I was a little upset about that.

Some people we interviewed struggled with being asked by siblings not to tell nieces and nephews.   As one participant put it, “I can’t say anything to the kids” for another ten years or so because “my sisters would disown me because now I’m putting the burden on them, the kids... who are 18, 19, 20 and 23.”  Others did give information directly to nephews and nieces, feeling it wasn’t right for these younger relatives to “be in the dark about it” because their parents were reluctant to talk and felt it’s best not to “sugar-coat” anything.

Receiving the News

Information about cancer risk flows in many different directions within families. Many people we interviewed talked about what it was like to receive news from relatives and then begin understanding their own elevated risk. Jack said he wouldn’t have known that he should be tested for Lynch syndrome if his niece hadn’t gotten in touch. Terry’s sibling pushed him in repeated conversations, reminding him that investigating his possible increased risk could help his children as well as himself.  A few people have increased risk from both sides of their families and therefore  double the number of conversations.  Heather described a “very alarming” family meeting called by a recently diagnosed relative to inform others that they too are at risk for Lynch syndrome.

 

Paul’s mother told him about his increased risk when he was a young adult, but he says he couldn’t absorb what she was saying at that time.

Paul’s mother told him about his increased risk when he was a young adult, but he says he couldn’t absorb what she was saying at that time.

Age at interview: 46
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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Well the actual beginning of the story is my mother being diagnosed and telling all of us kids that it’s a familial issue and that we should all get checked out...I did not. But to my credit, I was late teens and I was not interested in listening to anything that my mother had to say. And, you know, I was in my teens, so I was invulnerable. I did not have to get checked out for anything. I felt fine. And so flash forward many years later, and I was doing a pre-employment physical for this job I had gotten. It was pretty good job, and I was excited about it. And they did some blood work and told me that I was severely anemic. And so I needed to address that before they could clear me to come to work. So I went to see a doctor about it. And he took a family history, and was horrified that I was, you know, in my early 30s and had not been checked out. Because, apparently, I learned much later on that if you don't get diagnosed and get treated with familial polyposis, that people tend to be dead of colon cancer by 45.
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This-- I think this took place during a time when, when things were a little tumultuous. I do remember being at the hospital when my mother came out of surgery. And that was very difficult for me, because, you know, for all the issues that we had, my mother was always a very strong person.
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So they weren’t a lot of help. So my mother did everything herself. So it was very difficult to see her in that that kind of position of helplessness. So I remember, that was kind of tough.

 

Amy describes being contacted by a relative who had just discovered her own BRCA1 mutation.

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Amy describes being contacted by a relative who had just discovered her own BRCA1 mutation.

Age at interview: 30
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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She reached out to me, because they told her, let all your relatives know, you know, especially female, even though it can affect, you know, male or female. And so she did, and I just decided to do it. She said, you know, ”this is not something I'm telling you have to do,” she didn't pressure me at all. But I'm kind of a hypochondriac myself, so I was like, well, I want to know, you know, I need to know. In my head thinking the whole time it would come back negative, because I was thinking in my head, I would know if there's something wrong with me. But you have no control over that so. Yes.

Grandparents, Parents, and Children

The importance of communication with the generations above and below came up a lot in our interviews.  Some people noted that discussions with parents are impossible because people in that generation are too ill or have already died.  Others described older people not wanting to focus on genetics, or not having records that would show useful patterns of cancer risk and cancer.  Jack said older generations in his family “never talked about cancer or disease or what was happening or how they dealt with it,” but that is “probably changing generationally now.”  In Lisa J.’s family, parents were not “talker[s] about that type of stuff.”  Asante, Precious, Ronnie and others spoke about how hard it can be to “break the silence” about “incurable or curable diseases” in communities of color.

 

Asante is trying to understand patterns of illness in her family by talking with her dad and studying her family tree.

Asante is trying to understand patterns of illness in her family by talking with her dad and studying her family tree.

Age at interview: 44
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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So I said “Dad, you have to tell me. You have to tell me, you know, what did your mom have? What did your dad have? Were there, you know, did you even have, is there any diabetes in your family? Is there anything in your family that I should know about?” Because I have this little boy, you know, who needs me. And for him, I need to know. I feel like knowing that you have a history of diseases in your family, it might not prevent it because it's genetic, but you can definitely make healthy lifestyle choices.
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I can talk until I'm blue in the face to tell my dad to get genetic testing, and he is not going to do it.
You know, he comes from an area where, you know, horrible things happened. And so I think that's where we're at. But I think it takes us, the younger generation, to try and advocate and be advocates. To say, you know, there are a few doctors that you can trust. You know, there are a few. But the best thing you can do is be your own-- know your body. Talk to each other. You don't have to go to the genetic testing person, but we can talk to each other. You can know how your great grandmother died by asking your grandmother. You can know how your aunt died by asking people. Talk to each other. I'm very fortunate in my family that my cousin put together a family tree that goes back generations. But we never talked about health. We just talked about where we came from and how that worked. So if I look at that family tree and I try to go back to see how these people died, that’s a huge task on me. But that's something that I owe my son. You know, so I'll add that to my list of many thousand things that I need to do.

 

Becky describes her father feeling guilty.

Becky describes her father feeling guilty.

Age at interview: 39
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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My dad said that he actually thinks he would have thought twice about having kids if he had known that he had this 50% chance of handing down the gene. And I just laughed at him when he said that. I said, “oh, for heaven's sakes, Dad. You know you wouldn't give us up for anything.” I said, “don't be so dramatic.”

But yeah, he really felt horrible about it, still feels horrible about it, will probably continue to feel horrible about it for a while.

When it comes to talking with their own children, some participants felt that their kids are still too young, or the time was not yet right. Others got going as soon as possible. Cynthia took her daughter to doctor appointments with her to provide “a foundation of education” about BRCA mutations starting early in life. Matthew and his wife modeled for their kids the “openness with which we discuss” cancer risk and cancer and included them in many conversations and decisions.

Not Talking

A number of people we interviewed described reasons why conversations about cancer risk don’t happen in their families. Mary avoided the topic because she “would become very emotional about it” and that didn’t feel good.  Discussion of cancer risk in Maria H.’s family was hard because some people live in Mexico, and others in the United States. Kim was selective in what she tells her family because “they’ll think, oh, my God, if it’s... hereditary... who did it?”

 

Precious says her family chooses not to talk about disease.

Precious says her family chooses not to talk about disease.

Age at interview: 65
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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Only times my family has talked about the disease itself is if I'm getting ready to have a test or something like that, and I've asked for prayer about it. But as a rule, it's never brought up as a subject to talk about unless I was talking with the person who actually had the disease. And we'll compare notes or something like that. But most of them have all, as I said, they've all died. But when they were living, we didn't talk a lot about the disease. We compared notes on occasion. But no, we were pretty much distant in terms of talking about the disease. We chose not to.

 

PSM says she learned at an early age not to talk about cancer risk.

PSM says she learned at an early age not to talk about cancer risk.

Age at interview: 70
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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I mean my mother, and her-- they didn't talk about these things. They just-- it was just like something that they had to bear. My mother gave a little more information. My grandmother, if you mention the people that had passed, crying. And then my mother would start to cry. So you learned at a very early age, don't talk about this. Don't talk about your aunt and uncle that you knew who died, at very young ages, not from cancer. But don't talk about it, because it just upsets everybody. And so you don't ask questions. You know, we always knew that grandpa-- my mother's father, had colon cancer. He is the genetic link, and that was, you know, because that's what he died of. And he was very young. He was 51.

Not Being Heard

People we interviewed spoke often about their family members not wanting to talk about cancer or cancer risk and also not wanting to get screening for themselves. Sometimes this is because other health issues are considered more important and there is little attention left to think about risk, or because family members are busy with starting their own families. Other times it is because, as Susan put it, “people are very resistant to learning information that threatens them.”

 

Thomas says nobody in his family listens to what he is trying to tell them.

Thomas says nobody in his family listens to what he is trying to tell them.

Age at interview: 47
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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My biggest pet peeve is nobody don't listen to me. You know? But they don't listen to what I'm trying to tell them. I'm not telling you anything that I didn't experience. I can't talk about something I didn't experience. And talking about something that somebody else experienced, I will never get it right because I’m not using their words.
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And you know how most families is not keen on talking about family problems. You'd rather sweep it under the rug or just don't deal with it, you know? And being a baby from both sides, you don't have no say. So you don't have a voice yet. You don’t have an idea. We’ll tell you when you have an idea. That’s how that goes.
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I'm only telling you what they was telling me. So they was looking up my information. I said, but the way you all are looking at me, you're looking at me like I'm lying about getting cancer. So when I lift up my shirt and I show them my scars, and I was really angry because I don't like showing that. This covered up makes me feel normal.

 

Chelsea is surprised that some of her relatives do not seem to want information about genetic risk.

Chelsea is surprised that some of her relatives do not seem to want information about genetic risk.

Age at interview: 30
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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What went into the decision that your parents made to get themselves tested?
That's a good question. I guess so we could inform our family members on one side or the other-- you know personally, throughout the experience, and even if I'd had a more prevalent history of breast cancer, you know I guess I'm the type of person who would always want like more information rather than less. So just assumed that everyone else on either side of the family would also want to be armed with that info. Turns out maybe they weren't. But we would-- that was like probably the main impetus behind it, is that we'd want my female cousins and aunts on either side to know, also.

 

Karina Brierley, MS, LCGC, Genetic Counselor at Yale University’s Smilow Cancer Center, describes how genetic counselors can support family conversations.

Karina Brierley, MS, LCGC, Genetic Counselor at Yale University’s Smilow Cancer Center, describes how genetic counselors can support family conversations.

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The information that comes from genetic counselling regardless of the test results can be very important for family members and can be literally life-saving in some cases. At the same time that isn’t to say that it’s always easy or straightforward and that everyone is going to have an easy time with it or the same reaction. So, as people will see in the videos that each family’s different, each person’s different, they’re going to have different challenges, different approaches, different reaction to the information. It can be difficult and it can be scary to have to be the giver or receiver, and people can have a really wide range of emotions. So, I think it’s using the tools that are available that often times as genetic professionals we’re here and happy to be kind of the source of information and support to help people strategize; to help people ask questions. So, you know, sit down and often talk to people on the phone or in person about “how do I tell, who do I have to tell and how do I tell them what?”, you know, how do we give them that information. So, I think, you know, our job in seeing a lot of patients is also kind of know what strategies might help and help people kind of talk through that in their family. Maybe there are certain people that they will have an easier time telling and they can utilize those people to then help disseminate the information through their family that, you know, they tell key people and have those people tell other key people that they kind of find strategies that work, if they’re closer to certain people and not others, that we have tools like family letters, information sheets oftentimes it can help in those situations.