Relationships and Community

Living with inherited cancer risk can have an impact on both social and professional relationships.
People we spoke with told us about what they chose to share or keep private from others, how living with inherited cancer risk led them to re-think both existing and new relationships, and how new connections appeared in unexpected places.

Deciding What to Share

Some of the people we interviewed faced decisions about what information to share and how to share it. Striking a balance between maintaining privacy and sharing information was at times challenging.  Several of the people we spoke to said that they were very open about their health, and that they hoped this would help others. For example, Amy felt that her openness would “help raise awareness” of breast cancer in general and hereditary syndromes in particular. Steve K. said he “talks freely” about his health, often sharing his story when someone is expressing concern about having a colonoscopy. Mea underlined the importance of open conversation about “embarrassing” body parts like the colon since they could be affected by cancer just like any other organ.

 

Precious is keen to share what she has learned from her own experience.

Precious is keen to share what she has learned from her own experience.

Age at interview: 65
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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I have friends now who have breast cancer, and they don't want anybody to know. They don't even want to talk with me about it. You know, it's like they, that's the last thing they want to do, is to be around anybody else that has breast cancer. But then I have others who want to learn more, who want to be a part of support groups, who want to advocate and whatnot. So, everybody reacts differently. But I've always been kind of like, outspoken about it. And I want to, you know, have people know because I want to be a help. Because I want people not to make mistakes that I made or to try to learn from my experiences with it or whatever.

 

Heather believes that being open about hereditary cancer is constructive.

Heather believes that being open about hereditary cancer is constructive.

Age at interview: 33
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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It's really about just not being ashamed or shy about things. I think the more we talk about them, the more good it's going to do. I spent a couple years being really hesitant to talk about Lynch syndrome. And I ultimately came to this place of, I've had some conversations where I really raised awareness about it. And any way that I can contribute to that, it's going to be a ripple effect ultimately, hopefully lead to more interest, more funding, more research, and then more knowledge.

Keeping Things Private

Other people we interviewed preferred not to discuss their genetic health risks with anyone other than family and close friends unless it was necessary or unavoidable. Heidi, for example, described herself as the sort of person who “didn’t want the attention.”

 

Sue doesn’t want her health status to dominate her life.

Sue doesn’t want her health status to dominate her life.

Age at interview: 61
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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I will not let it dominate my life. I need balance in my life. Yes, cancer is a part of life, and a part that I want to keep hidden from my life, or away from my life, but I know that risk of cancer is always there. But I don't want to dwell on that at all.
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So it's not like you turn that part off. But I don't talk about it a lot. A lot of my friends, or close friends know I have a hereditary risk for cancer, but it's not something that I, that's worth sharing.

 

Steve Z. prefers not to discuss his health with colleagues.

Steve Z. prefers not to discuss his health with colleagues.

Age at interview: 50
Cancer-Related Experience: Elevated Risk
Type of Inherited Risk: A polyposis syndrome
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Yes, so well, obviously, when I missed a month and a half--
They knew.
They knew something was up. I didn’t really share it with anyone who wasn't-- my friend I teach with, who recommended the doctors down at [Institutions]. Obviously, he knows. And then some of my close friends. But for the most part, I just kept it to myself. So, way easier. You know, I don't want to answer, oh, “how you feeling,” all that stuff. I feel great.

Challenging Social Situations

Some people we interviewed described finding themselves in awkward social situations because of their inherited genetic risk. Gina said her co-workers didn’t understand why she had medical appointments every three months. Ronnie worried about becoming the subject of gossip in her community when she first received her diagnosis.

 

Lisa S. had to make a quick decision about what to share when she ran into someone at a party.

Lisa S. had to make a quick decision about what to share when she ran into someone at a party.

Age at interview: 56
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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It's funny because cause I went to a party two or three weeks ago. And I've known these people for like 13, 15 years. And I saw a person I hadn't seen in about three years.
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But she said, “You look fabulous.” I said, “Yeah,” I decided I didn't want to tell her anything. It was like, ah I don't want to bring it up. I don't want to make the thing about me, whatever it was. You know because. I said “I’ve been working out,” which I've always been working out. But I'm like, ‘Oh, I've been working out.” I said “I've been doing some new exercises, you know, for my core.” She's like, “Well, you look really great.” She kept on going on about it. I said, “Well.” I said, ‘Actually.” I said, “To tell you the truth.” I said, “I had a double mastectomy." I said, “I'm a little smaller than I used to be. And so I think I'm just more in proportion than I was.” And she's like, ‘Oh!” I said, ‘No.” I said, “It's all good.” I said, “But you’re, what you're probably seeing is I'm more in proportion, and so I look slimmer.” I said, ‘Because I'm just, I'm, I’m smaller.” So, I felt like, all right. All right. I'm out. I'm being outed. I'll, I’ll just do it, you know?

How Relationships Change

Several of the people we spoke with explained that living with inherited cancer risk has led them to make more conscious choices about the people in their lives. Ronnie opted not to have a friendship with someone who was insensitive to her emotional state. Desiree said she has learned to say no to people and let others “step up and run with the ball.”

 

Christian now chooses to focus on deeper relationships.

Christian now chooses to focus on deeper relationships.

Age at interview: 25
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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I think it has affected, you know, the people that I choose to become friends with. It has affected certain friendships of mine where, you know, I focus more on the deeper relationship. I don't want to make very surface, superfluous friendships. I want deeper things, because that's, for me, what matters. So I've spent a lot of time cultivating that.

 

Joan has chosen to eliminate negative people from her life.

Joan has chosen to eliminate negative people from her life.

Age at interview: 63
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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I think what cancer survivors and people going through cancer learn along the way is that you're given permission to  walk away from things that are stressful, because stress fuels cancer. So that, that's been a life lesson, that you can't be around people with stinking thinking.
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When you're going through cancer, you have to take all your energy and put it into positive. You can't be sucked out into people's negativity. Because you just can't put your strength that way.

Some people we interviewed were also sometimes be surprised to discover a sense of connection with others when they least expected it.  Others spoke about how relationships between generations can change, or how experience with inherited cancers results in new kinds of relationships within their networks.

 

Chelsea says it was hard, but very moving, to see how her breast cancer experiences affected other people in her life.

Chelsea says it was hard, but very moving, to see how her breast cancer experiences affected other people in her life.

Age at interview: 30
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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Yeah. My parents were incredibly supportive. And again, they were physically there with me almost every step of the way. And I know, like most parents, they would have done anything for it to be you know them instead of me. But I think in a lot of ways, it made-- it almost made it harder sometimes, because I think for them, it sort of was harder to see your child go through something like this and to be more or less completely helpless in it. You know there wasn't anything that they could do about it. Meanwhile, when I-- and in my position, there's nothing that I can necessarily do about it, but I could you know go to the appointments and check all the boxes and do what my doctor told me. And at least there was some action for me to take. So even though I definitely had moments of helplessness, like at least there were tactical ways that I could sort of figure it out. Whereas my parents— you know they didn't really have the same options. You know they were just there to support me, for the most part. And obviously, my mom took care of me after my surgery and things like that. But I knew they had a really tough time. And I-- that definitely was like a tough spot for me, too-- for them to be like that upset. You know some of the nicest things that you know like my friends did was, you know they'd text my mom and be like, “stopped and saw [NAME] today. And then we got a drink after work,” or-- you know if they couldn't be with me at an appointment, which was few-- I could probably like count them on one hand the amount of appointments that they didn't go to. You know like a friend here would go with me and then sort of report back to my mom. And it was really nice when my friend would reach out to my parents directly, also, and be like, “so how are you doing you know throughout all of this?”
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So you know it's-- the cancer's hard, but it's really hard to see what it does to the people around you. 

 

Lisa S. describes how she made an unexpected connection with a bus driver who had also had breast cancer.

Lisa S. describes how she made an unexpected connection with a bus driver who had also had breast cancer.

Age at interview: 56
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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I was on the bus two weeks ago. And a lot of people remark about my hair. So the bus driver, she says, “I love your hair.” I said, ‘You know what?” I said, “I really needed to hear that today.” I said, “Thank you so much.” I said, “I was feeling a little bit weird,” something, not weird, but just like-- I said you know, “I recently had breast cancer. And I just needed to hear that.” She said, “Ah.” She said, “Me too.” And she looked great. I said, “What'd you have?” She said, “I had the DIEP.” And I said, “You look fabulous.” And I said to her, “Can I hug you?” I said, “Can I hug you?” She's the bus driver.
That's funny.
You know? But you feel this sisterhood. You feel like, oh my God, we've both been through, ugh. I don't know what your-- what you've been through, but we all know, this is just not easy.