Making Sense of Inherited Cancer Risk
Understanding what inherited cancer risk means on a personal level takes time and can be a complicated process. How your lifetime risk of developing cancer differs from the general population depends on your family history and genetic mutation. But learning you are at greater risk does mean, for almost everyone, increased day-to-day awareness of uncertainty about future health. This part of the website explores what people we interviewed had to say about grappling with this uncertainty.
Sue’s feelings about her Lynch syndrome diagnosis changed over time.
Sue’s feelings about her Lynch syndrome diagnosis changed over time.
It’s really important to put it in perspective. As I said, when I first found out I had Lynch syndrome, I felt like I received some type of death sentence. And my husband had to remind me that ‘you don't have cancer’. All of us have genetic backgrounds that affect heart disease, stroke, cancer, et cetera, et cetera. You really have to just accept it and move on with your life and you do what you can to mitigate, but not dwell on the fact that perhaps someday I'm going to get cancer and perhaps that cancer is incurable, and I may die from cancer.
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So living with Lynch syndrome is just one more little issue that you have to deal with as you go on with life. So regular screenings are a part of my life. I'm fortunate to be part of the health care system that's been super, super supportive and watches my history of screenings, let's me participate in decisions for how often we do screenings.
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There are all types of hereditary risks in everybody. I mentioned before, people that have high blood pressure, people have heart disease, people have strokes, mental illness. There are a range of things that I feel like knowing that I have a risk of cancer, I've taken better care of my body. And I'm getting screens regularly so that we can detect it early.
Taking Stock of Risk
Some people we interviewed took comfort in learning statistics about their risk. Briana, for example, found it “very helpful” when the doctors “laid the facts out… [and said] based on your family history, we believe you have a 50/50 chance [of getting cancer].” Others discovered that statistics have little personal meaning because “every time [the doctors] would say” the risk is low “I kept falling into that bucket.” Many people we interviewed who had not yet had cancer, or who had been cancer-free for many years, said they are always working hard to prevent cancer but still feel “on high alert” for it.
Matthew has gone more than 20 years without a recurrence but believes “chances are” he will have one eventually.
Matthew has gone more than 20 years without a recurrence but believes “chances are” he will have one eventually.
But I think in terms of an understanding of genetics, and the impact, and the part it plays, and the odds, you know, I think we had a pretty high understanding of what that meant, in terms of, your risk is x percent, whereas the general population is y. So we had a pretty good understanding of that. And also, I think just understanding beyond colon cancer, which is the primary Lynch syndrome risk, that there's a risk for other cancers.
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I’m lucky that I think I've gone 20 plus years and not had some level of recurrence. Now, it may just be the benefit of great healthcare, and the fact that I get screened on a regular basis, and perhaps lifestyle choices of eating healthy, and, you know, taking care of my body in some way. But there is an aspect of, this clock isn't going to run out forever. At some point, time's going to be up and there's going to be something that’s going to come up, whether that's another colon cancer occurrence, some other type of cancer. I don't know. But the likelihood of that, I think it just was cementing the reality that there probably is going to be something that comes up along the way. When is that going to happen? You know, it's not indefinite. Maybe I'll be lucky and it never will. But, chances are, it will.
Heather says that cancer screening is harder for her than it would be for men because women have more affected organs.
Heather says that cancer screening is harder for her than it would be for men because women have more affected organs.
Cause it is not a guarantee that I am going to get cancer. It's not a guarantee I'm going to develop one of these, but I kind of take it to be that way. It's going to happen. The goal here is to find it faster than otherwise, giving me better chances to treat it, to fight it. You know.
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Just the volume of more screenings that it means for me as a female, you know, spilling over into ovarian, endometrial, some bladder. All of this stuff kind of connected in the reproductive system. Those screenings are-- I don't want to say more difficult than colon and stomach, but not as certain in the outcomes of them. And still can be pretty uncomfortable and difficult. And so it adds a bigger list of things for me to tackle.
Feelings about Risk
People we interviewed have many different emotions about their cancer risk. Some say they try not to think about it. Others describe coming to accept their increased risk, figuring it “happens for a reason,” or that the only way to cope is to “move on with your life.” A number of people said they had to reckon with feeling like “a ticking time bomb.” At first, some people felt angry, frustrated because of “hating uncertainty,” or like all they wanted to do was “be in my bed.”
For some people, finding a genetic link is a relief. As Kim put it, finding out she had Lynch syndrome meant she could stop wondering if she should blame herself for getting cancer because the test explained “that’s why. That’s why I got it then.”
Other people talked about feeling fortunate to know about their cancer risk so they can “be followed more closely,” “know what we are up against,” use “knowledge as power,” or “minimize those risks and catch anything that comes.”
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.
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.
Sue has had a lot of fear about her risk, but also feels lucky to know about it.
Sue has had a lot of fear about her risk, but also feels lucky to know about it.
And their cancers may range from, you know, all types, blood cancers to reproductive organ cancers. And they can't figure it out. And that there was a point, after hearing these stories a few times that I went, ‘you know, maybe I'm the lucky one’. Instead of always feeling like I'm the unfortunate one that has this genetic high risk of cancer. Maybe I'm the lucky one because I know. And I can screen and take care of myself earlier rather than letting that monster get into my system and eat me up.
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As I said, when I first found out I had Lynch syndrome, I felt like I received some type of death sentence. And my husband had to remind me that you don't have cancer. All of us have genetic backgrounds that affect heart disease, stroke, cancer, et cetera, et cetera. You really have to just accept it and move on with your life and you do what you can to mitigate, but not dwell on the fact that perhaps someday I'm going to get cancer and perhaps that cancer is incurable, and I may die from cancer.
Eve felt a wide range of emotions when learning about her cancer risk after genetic testing.
Eve felt a wide range of emotions when learning about her cancer risk after genetic testing.
How did that feel to you, to get the information that this is something else?
Initially, there was relief. Then there was anger. And now it's just kind of a sense of wondering, you know, when-- I still have my breasts, and I, depending on what you read on the internet, I have a very high chance of having breast cancer eventually. So it, you know, it's a sense of when’s it going to happen? I hope it doesn't progress to Stage IV before something is found within me.
The people we interviewed for this study have hereditary syndromes linked to elevated risks for cancers that can begin growing in multiple places in the body. Many participants talked about how overwhelming it can be to come to terms with this. As Paul said about his polyposis syndrome, “it’s just a little more far-reaching than I had originally thought.” Lisa J. figured she was done after testing positive for BRCA1 and having her ovaries removed, and then later on had to grapple with the breast cancer risk. Heather said she had to learn about “like eight plus cancers… I’m now at risk for” after her diagnosis with Lynch syndrome.
Knowing she is at risk for multiple cancers makes JanLynn “hyper-vigilant” about possible symptoms.
Knowing she is at risk for multiple cancers makes JanLynn “hyper-vigilant” about possible symptoms.
What it has meant for me is, as for I think everybody who has Lynch, is that you are at risk for any cancers that are fast growing cells, in organs that are fast growing cells. So skin, lung, brain, stomach, colon. There's probably more that I can't think of.
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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.
Ronnie says that though she is perfectly healthy, she is in lots of conversations about trying not to die from her various cancer risks.
Ronnie says that though she is perfectly healthy, she is in lots of conversations about trying not to die from her various cancer risks.
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.
Not Seeing the Full Picture
Many people we talked to described having misunderstood, at first, the meaning of cancer risk for their own health and their own lives. Peggy didn’t realize how many things could be tested for. Kim noted that when she was tested, she didn’t know what a “positive result” would mean. For Becky, though her brain knew she was at high risk for breast cancer because she “had the gene mutation,” when she actually found a lump in her breast she ignored it because cancer seemed “not in the realm of possibility.” A number of people described not understanding that more than one organ could develop cancer, that the same cancer might recur, or that frequent screening is no guarantee that cancer will not develop.
Asante didn’t realize that she might get breast cancer even while doing frequent screening.
Asante didn’t realize that she might get breast cancer even while doing frequent screening.
And I really, honestly, naively thought that being up on my screening would prevent me somehow from getting breast cancer. And I think that's the missing piece. That's the piece that was missing for me. I said, oh, I go every six months. These people won't let me go. You know, and I would even make jokes about it. I would say, they're so on top of me. They're always on top of my breasts. Like, I even made jokes about it. And so I feel like people need to understand that even though you do go for your screenings every six months, it’s the finding it in-between. So if you didn't go six months and you waited a year, your breast cancer, if you did get breast cancer, would be far less treatable than it would if you found it when it was small.
Yeah that's one thing I want to make clear to people, is that, you know, your screening is not, it’s not prevention. It's early detection.
It took Lisa S. a long time to absorb the fact that being BRCA1+ meant high risk of breast cancer even after having her ovaries removed.
It took Lisa S. a long time to absorb the fact that being BRCA1+ meant high risk of breast cancer even after having her ovaries removed.
The geneticist, three years ago, you know, they give you a whole lot of information-- blah, blah, blah, blah. And when it came to the breast, she says, “Well, we can”-- right away, she says, “After the ovaries,” she said, “Well, after we take out your ovaries,” she said, “We can do a, you know, mastectomy and take off your breasts or-” I'm like, “no, they're fine. I don't really understand why you'd want to do that.” And I don't think I really understood the significance because I know that a lot of younger people do that. And I don't think I understood that. I was lucky. It came back at DCIS, which means it was stage zero. It could have come back as stage two, or stage three, or invasive.
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You know, it's just a game changer, that BRCA's a game changer. And I didn't realize that. I can't figure out, I just can't figure out why I didn't know that. I live in a major city, right? And I worked at the time at [university name]. And they had a great genetics center. I think they gave me information. And they were like, “Well, you have a choice of removing your breasts or monitoring them.” I'm like, “Oh, no, no, no, I don't see why I would need to remove them.” And I don't think I got-- I think they were like, “OK.” I don't think there was enough pushback. Like, let me tell you why you might want to.
Susan rejected genetic testing when she was younger because she had already had cancer, and didn’t understand how the test might be useful in terms of screening for future cancers.
Susan rejected genetic testing when she was younger because she had already had cancer, and didn’t understand how the test might be useful in terms of screening for future cancers.
And I was never particularly interested in children. So it didn't have any effect. But it did have an effect on my initial rejection of having [um] genetic screening, because I thought for what purpose would this be. And I had no idea that there were, there were genetic variations that could continue to come to light, could come to bear, even after a person had cancer. I thought if you had cancer, you had cancer, and either it recurred or it didn't recur. I had no idea that I might have one cancer, and then I might very well have another related cancer down the road. [uh] I think in one case, my aunt may have had three or four different cancers, because I know that when I was speaking to my cousin, she mentioned that her mother had had a number of cancers, had been treated for them. And then she had thyroid cancer in her 90s, she decided she didn't really want any more treatment, she was old enough.
Not Wanting to Know
Some people we interviewed were eager to get their hands on all available information, but others wanted to know only what was immediately useful to them. As Peggy put it, “sometimes it’s better off not knowing.” Mea felt similarly, noting she tries to keep details about her risk “more out of sight, out of mind.” Jack was “not interested in going any deeper than knowing that it’s genetic.”
PSM found information about additional risk too much to take.
PSM found information about additional risk too much to take.
I was reading the information they gave me, you know, about the syndrome and everything. And it's like, well, you know, stomach, and the liver. It’s-- I don’t-- I stopped reading it, you know. Even before I started chemo, you get all this literature from the hospital. And it's wonderful and everything. After a while, I just stopped reading it. I said, “I don't want to know any of this. If it happens, it happens. And I'll deal with it then.” But it's like, it’s too much to think about. It's too much to-- “oh my God, what if this happens? Oh my God, what if that happens?”