Identity, Emotions and Mortality

Finding out you are at elevated risk for cancer can have a significant impact not only on physical health, but also on life in general.  People we interviewed -- both those who already had a cancer diagnosis, and those who did not -- had a lot to say about the impact of increased risk on their emotions, their plans for the future, their identity, and the way they live day-to-day.  This part of the web site presents those experiences.

 

Amy says her life has been affected by genetic risk in several ways, and her feelings about it have changed over time.

Amy says her life has been affected by genetic risk in several ways, and her feelings about it have changed over time.

Age at interview: 30
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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So I actually, at the beginning, I was devastated. I wouldn't say devastated-- I it took a while for me to process. But now, you know, two, two and 1/2 years out of knowing, it's honestly kind of a sense of relief, because I do take the necessary steps to stay on top of it.

I've kind of accepted it now. I mean, it doesn't bother me as much. Like I said, I have kind of a peace of mind knowing that there is a plan in place to help prevent it and, you know, that kind of thing, detect it early. You can't prevent it but detect it early. You know, it's just, it's crazy because I would have been the last person. I have always had a great immune system. You know, I lived a pretty healthy lifestyle. I'm very active, no history of any sort of health problems at all. I never had a bad check in my life, I don't think...

And you also look at life differently. I try not to take things too seriously, like, you know, things I used to stress out about aren't as important anymore.

 

Thomas describes how cancer risk has a different impact on him than other life-threatening risks.

Thomas describes how cancer risk has a different impact on him than other life-threatening risks.

Age at interview: 47
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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It will humble you. 

Big time, huh? 

It will humble you big time. Because if it, if cancer don't humble you, ooh, I don't know what it's going to take for a person to get humble. Because we usually say, oh, when your life is threatened, you're humbled. Nah, because see, when people get shot and they survive, they usually think, yeah, I got lucky, or I was blessed, or somebody was looking out for me. You know, you're not really OK. You're not really, you’re not, you're shocked. You're shocked to the fact that you survive a gunshot, you understand? You're shocked to the fact that you survived a horrific car accident or, or a plane crash. You know what I'm saying? You know, but some of those people in the plane crash don't even survive. But compare that to cancer. You have no win. You see what I'm saying? Even people going down in the plane have a better chance of me surviving, and that's crazy. And that's what nobody looks at. People who get in the car accident, you know, or people who've just fallen off the roof, you have a better chance of surviving life luckier than me, because I have a stamp on my life now. You get shot and survive, and that's not a stamp. You survive. 

Does Genetic Risk Define You?

Knowledge of elevated genetic risk had a significant impact on overall sense of self (or identity) for some people that we interviewed, and very little impact for others.  Cancer and cancer risk “doesn’t define me,” says Joan, “but it’s part of who I am.”  In contrast several people talked about how their self-image as a healthy person was disrupted when they learned about their risk.

 

Paul says Lynch syndrome is part of his personality.

Paul says Lynch syndrome is part of his personality.

Age at interview: 46
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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So as of right now, the ultimate cause can't be treated, only the proximal issues can be treated. So that’s pretty much-- I try to stay solution-oriented. So I will have the regular tests done on things that they know can cause issues. So we'll look at the thyroid, the duodenum, keep an eye on the small bowel, that kind of thing. But as far as the condition as a whole, I mean, in a sense, it does define me, because it's rare. So, you know, there is that issue. So I guess, in a sense, I do think of it as an aspect of my personality. But I don't think it affects my day-to-day.

 

Heather says she sees herself as perfectly healthy.

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Heather says she sees herself as perfectly healthy.

Age at interview: 33
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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And you know something that we all felt very strongly as a family about from the beginning was, I don't want to be viewed with pity. I don't want to be viewed as someone who's sick, or there's something wrong with me. I'm not. I'm perfectly healthy, happy. I just have to get more annual medical screenings done than you do.

You Only Live Once

Many people we interviewed described how learning about their inherited cancer risk made them appreciate life more and re-focus their energy on what matters most.  As Matthew put it, summarizing an experience others also had, “it matured me, in a way, having gone through that... You have to value each day. And you don’t know what could come.”   Learning to “not sweat the small stuff” frees people to “live it up” or “embrace every day” in various ways.  Briana and Sue both talked about traveling more. Kerry is “much more appreciative of the smaller things, the sun shining... my kids laughing, things like that.”  Lori has stopped taking things for granted and “lives the best life” she can, enjoying the seasons, fixing things up at home, and spending time with people she loves.

 

After his Lynch diagnosis, Christian says he focused more intentionally on how – and with whom -- he wanted to spend his time.

After his Lynch diagnosis, Christian says he focused more intentionally on how – and with whom -- he wanted to spend his time.

Age at interview: 25
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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I would say it's humbled me. I don't think of myself as invincible like I used to. I think I try more to enjoy things, and not focus so much on all the negatives. And it’s just really brought me down from the high horse that I used to put myself on, in that, you know, we have a finite amount of time here, and how are you going to spend it? And I want to spend it not necessarily worrying about all of these other crazy things that are out of my control and enjoying things. But I think about it. I think about it, you know. “How has it changed you?” 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, the deeper relationship. I don't want to make very surface, superfluous friendships. I want, I want deeper things, because that's, for me, what matters. So I've spent a lot of time cultivating that.

 

Heather says she started making it a priority to do what matters to her most, and live life well.

Heather says she started making it a priority to do what matters to her most, and live life well.

Age at interview: 33
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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And so my mom and I know, you know-- we kind of joke. It’s a canned saying, but we often say, ‘life is too short to drink cheap wine.’ If we open a bottle that doesn't taste good, well, pour it out! Who gives a shit? Like, who cares? Life is short. And, you know, splurge. Pay the extra money. Take the trip now. It has really been really impressed upon all of us to not wait and not put things off. You know, and I attribute it hugely to my uncle. But, my dad also has had his very best friend passed unexpectedly in a very tragic way. And, he was the kind of guy who had spent his life working and saving for retirement. That retirement never came for him. These things have all just kind of led to this, this motto in our family. You know we joke about it for my mom. We make fun of her a lot, actually. We buy her anything that says "YOLO" anywhere. We buy it for her. You know, this, "you only live once." But it's really become our mantra....
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You know, I've traveled more because of it. I am quicker to make decisions. It’s, I used to agonize about being indecisive. And now, I just think I come to decisions a lot faster. You know, we look at a house to buy and I'm like, yep, this will work. Let's do it. Like, where's the dotted line? I think I used to just weigh things a lot more heavily, concerned about making the right decision. And now I'm kind of like, let's just go for it. You know, if we mess up on something, we'll fix it. I'd rather do that than sit here not moving for any amount of time because I'm concerned with picking the right decision. And I think that has 100% been attributed to feeling like I'm aware of time now, and I don't want to waste any of it with inaction. You know, I'd rather go to bed later and be tired during the day if it meant spending that extra hour with our friends over dinner laughing and telling stories. You know, it's those types of decisions, it's easy for me to come to them now.

Several people talked specifically about how the desire to make every day count after learning about their elevated cancer risk impacted their work lives.  Lisa S. plans to retire earlier than she otherwise would have done.  Heather said she has factored the need to have good insurance into her decisions about changing jobs.  A few people noted how “that sense of mortality and time” has led them to (as Heather put it) “place a lot more value on my time outside of work,” and thus to put in fewer extra hours than before.  Elevated risk also made some more cautious with their careers.

 

Matthew describes a few ways genetic cancer risk has affected his approach to work.

Matthew describes a few ways genetic cancer risk has affected his approach to work.

Age at interview: 44
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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How has that genetic risk, and the cancer itself, affected your outlook on life?
Yeah. You know, we kind of talked about insurance. So I'm an accountant. I'm kind of conservative. So I think, in terms of career opportunities, I've probably taken less risks in certain areas. I haven't been maybe entrepreneurial, or sought out, you know, self-employment types of things, because of the value and the priority of having insurance, and knowing the importance and significance of that. [um] So I think that's probably played a part in some of, some decisions that I've made.
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But I think it helps me balance having a uber-successful career, or being super driven. I balance that with, it's more important to spend time with my wife and my family than do all those things. So I think, just in terms of perspective, it's probably brought perspective, you know, in that sense.

Getting Wiser

A number of people we interviewed also talked about how adapting to their elevated genetic risk helped them grow wiser and more emotionally mature.  Susan said she sees her Lynch syndrome connected to her “emotional progress” as an active and responsible person.  Paul said he has had to learn to stop “beating myself up about...[not being] diagnosed earlier.”  Eve said she has become “very empathetic toward others” and had come to “know my body and know my mind.” Christian described getting “comfortable with the uncomfortable.”

 

Kim has responded to Lynch syndrome by digging deep and not letting it define her.

Kim has responded to Lynch syndrome by digging deep and not letting it define her.

Age at interview: 55
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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And I try to, you know, I hate to be like cliché and say these, you know, silly things, but it's true. Like you know, you can-- everybody has something. That's kind of how I deal with it. I think everybody has something, I have this. What if I had had a heart attack? Oh, my God, I'd get behind the wheel. If I had a heart attack, every time I got behind the wheel of a car I'd worry. And so I kind of feel like I'm just in a bucket of people that like, you know, everybody has something. I feel like I'm more with the majority, quite frankly, than I am without. And what I mean by something, I don't just mean health problems. I mean, there's people dealing with all kinds of stuff. And mentally, you know, can bring you down as well. So, I grew-- people were dealing with mental and physical things every day, and I really try not to let it get me down. That doesn't mean sometimes, you know, if I’m at a restaurant and I go to the bathroom, and you kind of get there alone, and you think, Oh, dear God. You know, you get these little fleeting thoughts. But I’ve gotten pretty good at shaking them off and not carrying them around. Because, in my mind, if I think every day, “oh, my God, I have cancer, they can't tell me I'm in remission, I have Lynch syndrome,” then I'm living with it. I may as well have it-- not really, but just kind of like I'm bringing it in. Like I really-- you can believe me or not, but I don't dwell on it as much as I would even think that I would have, if that makes sense.
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And what's strange is, like, if you dig deep, the times that I've dug deep are the times that like I pull from when it gets tough. So and don't use it-- like, I hate to say this, and I don't mean it. I did not use it as an excuse. I did not allow myself, like that to be something that I constantly was my out because of it. Don't let it define you. It's something that you have to deal with. But don't let it become all you.

 

Charlene uses her “second chance in life” to give back to others.

Charlene uses her “second chance in life” to give back to others.

Age at interview: 54
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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And that's why I just keep going. There’s, you know, 12 months of the year. People say because of animals, I love animals so much, I do all these activities with these animals. I do benefits for animals. I do a bowling sweeper for animals and take it to the local veterinarians to help them. And then, I do it for the shelters, Christmas critter party. And right now, I'm working on the veterans. I'm doing a bean bag tournament, and then there's a motorcycle ride for them. So that takes up like the rest the five months. People are so important, you know? A lot of people don't get second chances in life. I feel like I've gotten so many chances of life that I just want to help people.
A lot of gratitude.
I do. You know, and I thank Him every day.
Yeah. Yeah.
For so many chances to see my children and to let me keep seeing my grandchildren grow, because being a grandmother is like the best feeling in the world to me. You know, when you see their babies being born, it's like, thank you.

 

Susan says her Lynch diagnosis gave her a clear way to take responsibility for her own life.

Susan says her Lynch diagnosis gave her a clear way to take responsibility for her own life.

Age at interview: 71
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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It did reinforce me as a person, because it gave me a very clear sense that I have to take responsibility for my life. I always suspected it was a good idea. But I didn't have any particular thing I had to do. There wasn't anything that was particularly clear to me about how to follow the path of taking personal responsibility. And now I know what personal responsibility for my health largely entails, which is having [uh] these colonoscopies, these endoscopies, getting my skin evaluated, working on my weight, which I had totally neglected.

Mortality, Fragility and Fear

A greater sense of vulnerability and more awareness of mortality were described in many, though not all, of our interviews.  As Irina put it, knowing about increased cancer risk made her realize “how fragile everything is, and how you don’t really know what’s out there for you.”  Heather said she often feels, when among her peers in their 30s, that she is the only one thinking or talking about “this finite amount of time that we have.”  A number of people noted how nerve-wracking it is when more and more people in their families are tested for and/or diagnosed with cancer or cancer-related syndromes.

 

Kerry wonders if talking with loved ones about death is useful or not.

Kerry wonders if talking with loved ones about death is useful or not.

Age at interview: 36
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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And there were times where I would-- my mind would kind of, you know, go to the negative. What if, you know, what if I do die? And my partner would say, “Stop. Don't go there.” You know? “That's enough. Like, we’re, you're going to fight.” And my sister said the same thing. Like that's just not even an option. I mean, but then I would say, “Well, what if it is? I mean, what if that does happen? We need to talk about it.” Or I wanted to like have something planned out just in case. But at the same time, you just don't want to go there, because you can't let yourself go there. Because if you do, then what if it does happen? You know what I mean, like almost like I said before about willing yourself healthy. It's like I'd rather just stay in the positive and stay in the light and think that way.

 

Cynthia plans to be ready and accepting when it is her time to go.

Cynthia plans to be ready and accepting when it is her time to go.

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, it’s been, it has affected it. And I'm not sure if it's a positive or a negative. It's just different. It’s, you know, the kids and I talk about purpose. And if you aren't productive in giving to the world around you and no longer serve a purpose, is it not your time to go? And when the conversation originally started years ago, I wasn't ready to accept the fact that, “Yeah, I think it is your time to go.” I wasn't ready to say I'd be willing to let go. And now that I'm older and I've seen so many people with so many experiences with all of this and I've seen people go through and getting to that point where they can no longer, not because they're choosing, they just can't be giving and productive and not that I want to say goodbye to them. But if that was me, I could say goodbye. I could say it now that I'm ready to go, that if I'm not going to be able to be a productive part of society and give to the world around me because I no longer physically can, I'm going to be OK with that and I'm going to be ready to go. And so, I think all of this kind of helped me get to that. And, like I said, I don't know if it's a good thing or a bad thing, but it just helped me as a person come to terms with, there's going to be a time, and that's what that looks like for me, and I'm OK with that.
Is it like a knock on the door that we're all mortal and that the time could come?
Right. And, you know, like I said before, I wasn't willing to get there. Because my thoughts were like, “Well, what if? What if in two years my son has a child and I can't see my grandchild? What if?” And it was, it was selfish reasons. It really was. It was me wanting to be here to experience life through other people. And that's kind of selfish. And I guess I've come around that bend to realize that, you know, we live in a world with limited resources. We live in a world where, if we're taking more than what we can give maybe we should be questioning is it our time? Is it our time to leave those resources for that grandchildren when that grandchild is born even though I'm not there to see it?
Wow. So it has. It has affected me.

 

Facing mortality was tough for Joan in the beginning.

Facing mortality was tough for Joan in the beginning.

Age at interview: 63
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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Yeah, what was it like in the beginning?
It was scary. It was tough. It was facing mortality. It was facing mortality with little kids and thinking about what it would be like for them not to have their mom. And that's what pushed me through, kept me going for all the cancers, is “you're getting through this, you're going to beat the odds for your kids.” And so far, knock on wood.

A few people, including Jack, Steve Z. and Terry, noted that their lives were impacted very little by increased cancer risk, because “something can be done” to control the identified risk.

 

Being diagnosed with Lynch syndrome messed with Terry’s life for just a few weeks.

Being diagnosed with Lynch syndrome messed with Terry’s life for just a few weeks.

Age at interview: 61
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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It might mess with your life for a few weeks, but better that than forever. As far as the downside, you know I guess it's a bummer to hear that you have Lynch syndrome and your odds of cancer is even greater. But again, on the flip side, because I know that, it helped me and helps my doctors to determine what kind of test I should get or how often I should get it.

A number of people we interviewed spoke specifically about the fear and anxiety that entered their lives along with knowledge of increased cancer risk.  Several people described feeling like their own bodies were “ticking time bombs,” just waiting to explode.  Gina says she still has anxiety and fear “every time” she needs a biopsy.  Mea has panic attacks and Paul has anxiety when it’s time for screening procedures.  Heather’s therapist helps her deal with a “flood” of “overwhelming thoughts” about managing “my care, my screenings, my future children.”  Kerry says “knowing that I do have that gene mutation, you just know that things can be more toxic.”

 

JanLynn was worried about everything in the months immediately following her cancer treatment.

JanLynn was worried about everything in the months immediately following her cancer treatment.

Age at interview: 47
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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So to add to that, the threat, the risk, the increased risk for all these other cancers, it's like walking with a ticking time bomb on you. And you never know. And it's being constantly-- trying to be constantly aware of what is going on with your body, which is not something that I did before so. And you worry about everything. Every little ache, every little pain, every little spot, if you've gained weight, if you've lost weight, if you've, you know, don't feel well, if you get sick. You know, it could mean a host of things that you don't want it to mean. So you're hypersensitive and hyper-vigilant, which I don't want to be, but it's hard not to be. I suspect that someday it will not be, I will not be as focused on it. It's not even been a year since I finished treatment, and I have five years of exams every three months. So I get reminded of it all the time.

 

Awareness of her elevated risk makes Ronnie feel sick sometimes even when she’s not

Awareness of her elevated risk makes Ronnie feel sick sometimes even when she’s not

Age at interview: 40
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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But yeah, so I had to start the process once again of meeting back with my doctors. Because a year ago I had to meet with like the medical oncologist, the radiation oncologist to kick off the cancer treatment. And then now a year later I’m kicking off these appointments again to talk about not future breast cancer risk but also ovarian risk. So, I had to meet with my OBGYN, an OBGYN gyne—what is it—oh, gynecological oncologist. Yeah. And I think my breast surgeon, I think I needed to meet with him too. So yeah, it’s like you have to manage another set of cancer risks even though you don’t have it. So there were all these days when I was actually healthy but the fear of that and that news, it makes you feel very sick even though I wasn’t. So, I didn’t like that. It just kind of—those months were pretty ruined, I think.
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There’s fear again now, not just with the breast but now with the ovaries. And then I had to meet with my OBGYN. And he was suggesting since I’m 40 to take every—you know, to take out the ovaries, take out the fallopian tube. He wanted me to do a full hysterectomy. And so, yeah. The last few months, even though I was perfectly healthy, I’ve been in all these conversations about trying not to die. And so, yeah, it’s just been a lot.

Please visit our summary ‘Making Sense of Inherited Cancer Risk’ to learn more about how people we interviewed learned to keep information about their elevated cancer risk in perspective.