Christian

Age at interview: 25
Outline:

Christian at the age of 25 is dealing Lynch syndrome and Crohn’s disease. Both increase his risk for colon and other cancers. He receives his care at an academic cancer center where he sees a genetic oncologist and gets an annual colonoscopy and bi-annual upper endoscopy.

Background:

Christian is an African American/Caucasian man who lives with his parents and three cats in a Midwestern city.

Cancer-Related Experience: Elevated risk

Type of Inherited Risk: Lynch syndrome

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After one of his parents tested positive Lynch syndrome, Christian decided to get tested. At the age of 25, he finds himself dealing with Lynch syndrome—on top of Crohn’s disease (an inflammation of the digestive tract). Both of these “complications” increase his risk for colon and other cancers.

Christian gets his care at an academic comprehensive cancer center, about an hour’s drive from home. He appreciates being seen by his parent’s genetic oncologist, having a clear surveillance plan, and knowing that “they know what they are doing.” His access to this expert care is because he is still covered by his parents' insurance. Soon, at age 26, he will lose this coverage. At that time, he will need to weigh the cost of this “out-of-network” genetic cancer clinic versus switching to the local health care system within his insurance network. Thinking about the cost of health insurance is stressful.

Although he does not have a partner right now, Christian thinks about what Lynch syndrome might mean for any children he might have. Self-identified as a homosexual, he weighs the pros and cons of adoption versus surrogacy. While acknowledging he is not by any means ready to have children, working through those feelings challenges his assumptions and values. Just as it was imperative for him to know whether he had Lynch syndrome, Christian would want any future partner and children to know that he carries a genetic risk for cancer.

“Getting comfortable with the uncomfortable,” is a skill that Christian cultivated with frequent family moves and being the new kid in class. He accepts that he can't control his Lynch syndrome, but he does what he can to minimize his risk. He eats well, avoids exposure to sun and stress, and cultivates the good things in life—like cooking, music, and playing with his three kittens. Seeing a psychotherapist who encouraged him to look at things in a different way was very helpful. He is blessed with caring friends who have gained compassion by working through their own challenges. Christian finds special comfort in talking with his parent about their shared experience of Lynch syndrome. Ultimately, for Christian, it's important that people acknowledge that, “what you're feeling is valid” and to not minimize it.

 

Christian talks about expecting to test positive.

Christian talks about expecting to test positive.

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It was an easy blood test. And the results, waiting for the results was kind of the most dreaded part. Once I got them, I can't say that I was surprised. I had a feeling of, “I think I have this.” And I don't know where that came from. But when mom said, you know, “I have this genetic disorder. I want you guys to get tested.” I was just like, “I think I have it.”

 

Christian, who expected to test positive for Lynch, was calm when he received the news.

Christian, who expected to test positive for Lynch, was calm when he received the news.

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I wasn't, in the moment, terrified, angry. I didn't have much of a reaction other than, “OK.” I can't, I can’t control it. I can't change it. I just have to work with it. And this is, this is just another part of this reality.

 

For Christian, learning about risk related to his Lynch syndrome was terrifying so he tries not to think about it.

For Christian, learning about risk related to his Lynch syndrome was terrifying so he tries not to think about it.

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I just try not to think about it a lot. It is, I don't like thinking about it, especially in terms of like, oh, the ticking time bomb. It is very terrifying to be faced with the, like a sense of your own mortality. And it's scary. It's scary. Yeah, I try not to go there, just because, you know, I have my own fear of death. And if I start thinking like, OK, well, at any, at any point in time like right now, I could have cancer growing within me. I could have brain cancer, I could have skin cancer, and I wouldn't know, because I'm not being, you know, tested for these different kind of things. And then that catastrophizing, that kind of negative thinking will really just spiral me out of control, so I try and not think about it, but it is there. I just, I try not to. At 25, to be diagnosed with Crohn's, to be diagnosed with Lynch, and knowing that, for the rest of my life, I will have to change everything that I've known, and everything that I've become accustomed to, well, not everything. Certain things. I have to keep things in perspective. You know, I have to change things that I don't necessarily want to change. It is frustrating, and is annoying, in a word. So, it’s there. I just try not to have it be so present, because it can become all-consuming very quickly, and I just don't want to get lost in that.

 

Christian finds frequent screening comforting.

Christian finds frequent screening comforting.

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So it’s, for me, I would rather be checked every year than not at all for some people, you know, in some cases. But I really don't have an issue with it. I'm glad that it's something that can be surveyed and monitored. I appreciate that. So for me, it's comforting, knowing that I can be checked out by someone who knows what they're doing, and knows what to look for.
So would you say it gives you a little sense of comfort that this is happening?
Yes. Definitely peace of mind.

 

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.

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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.

 

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.

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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.

 

Christian now chooses to focus on deeper relationships.

Christian now chooses to focus on deeper relationships.

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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.

 

Christian finds having a therapist who “is not a fixer” to be a big help.

Christian finds having a therapist who “is not a fixer” to be a big help.

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I saw a therapist recently. And it's been nice to be able to talk to someone that's not in the family, someone who's not a fixer, who will listen, who has no opinions really, about, you know, this is what you could be doing, or should be doing. And just a different perspective. And she has framed a lot of things for me in ways that I would never have thought. And it's just helped me work through a lot of feelings that I've had about the Lynch, or the Crohn's, and just other, you know, stressors that I have in my life of, it's OK to change these things, and it's OK to set these new boundaries, because that's what you're doing. You're not cutting people out. You're not, you know, making these changes out of, you know, selfishness. In a sense, it's selfishness, but it's medical necessity, or medical desire. But that's OK. So it's nice to have someone there who can say, “it's OK, and what you're feeling is valid, and I'm not going to minimize that.” And that's been really nice.  

 

Christian says that having Lynch syndrome is not a death sentence and it’s important to line up your support system.

Christian says that having Lynch syndrome is not a death sentence and it’s important to line up your support system.

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I would say that it's not a death sentence. And that it will be OK. And that you just have to accept it for what it is, and don't make it into something it's not at this point in time. But that it’s, in this moment, like, you're OK, hopefully. And reach out to people. Find your supports. Because just hearing, you know, “Oh, I have Lynch, and this is what they told me,” that's scary. Being told that, “Oh, well, at any point in time, you are at this percentage of getting cancer.” Find your support. But that, right now, you're OK. And that don't make it into something it's not.

 

Christian notes there is no “standard of care” when it comes to helping others, so it is best to ask what would be useful.

Christian notes there is no “standard of care” when it comes to helping others, so it is best to ask what would be useful.

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I would say, talk to that person and ask them what they need, because everyone's different. There's no standard of care. There's no standard of coping. So you really have to, “What, what do you need?” And more specifically, “What do you need from me, or what can I do for you? If you just need to talk and have someone listen and not say anything, great. I can do that. Or if you just want to, you know, let it be and not really talk about it, that's fine too.” But I would say, definitely ask that person, “what do you need from me?”

 

Christian wants to know what to expect.

Christian wants to know what to expect.

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And to go over, because they go over and they give you the paperwork of, you know, these are the increased risks for this, this is the percentage of this for that. But maybe to say, you know, in the next year, this is what we're going to do. In the next two years, you should consider seeing this specialist. Just because otherwise, I'm just, you know, floating around, waiting to be told, you know, what to do. But I think that would be important, is, you know, a little more frequency and contact. And I can contact, you know, the doctor at any point in time, but, you know, to have that setup initially of, “OK, this is our initial consult, this is the basics of Lynch. Let's meet again in a couple weeks. What questions do you have?” I think that would be important. The face-to-face interaction, I think, would be really important to have.