Jack

Age at interview: 65
Outline:

After one family member was diagnosed with late stage colon cancer, a health care practitioner relative urged Jack and other family members to get genetic testing. Dealing with Lynch syndrome has been relatively straightforward because he receives reminders to get colonoscopies and feels reassured that there is a high likelihood of catching any potential problems early on. He worries about the high cost of follow up colonoscopies for those who are uninsured or underinsured.

Background:

Jack, age 65, lives with his wife in a college town in the Midwest and has 3 adult children. He is a retired social scientist and is White.

Cancer-Related Experience: Elevated risk

Type of Inherited Risk: Lynch syndrome

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Jack was diagnosed with Lynch syndrome ~3 years ago after receiving genetic counseling. His maternal grandmother died of colon cancer, at a time where no one “talked about cancer or disease or what was happening with it.” He never heard about getting genetic testing until his brother was diagnosed with late stage colon cancer, and then it was through a family member who was a health practitioner. Because of this experience he encourages those with Lynch syndrome to talk about it with their family members proactively because they “ought to at least know what the possibilities are.” His brother’s death from colon cancer reinforced for Jack the importance of getting regular colonoscopies.

Jack’s first colonoscopy was done as part of routine screening prior to his diagnosis and he was recommended to return for another one five years later. At that time one polyp was unable to be removed, even despite another attempt with specialized tools. Surgery was recommended where a foot of bowel would be taken out along with the polyp. Because of a prior operation for cancer in his head and jaw, along with radiation, he was concerned about this surgery because “there are always things that happen that they don’t know are coming, or might come or might not.” He went through the surgery fine, but then had an episode of his bowel twisting on itself that resulted in an unpleasant hospital stay with a nasogastric tube being necessary for a few days.

Jack knew very little about genetic testing or Lynch syndrome prior to his diagnosis. He is grateful to have it because he wants to learn and minimize his risks and catch anything that comes. Other than getting colonoscopies and being concerned that he will have to have another surgery if there is a polyp that can’t be taken out, he reports the diagnosis does not cause any psychological or other concerns.

Jack’s excellent “gold standard” insurance coverage has prevented any significant financial burden, although he has become more aware of how much health care costs. In particular, he is concerned about the cost of annual colonoscopies for others, including his own children. He notes “the absurdity of [paying] $6,000 to make sure that you don’t have what you have a predisposition to acquire.”

 

Jack, who has Lynch syndrome, describes what it is like to have frequent colonoscopies.

Jack, who has Lynch syndrome, describes what it is like to have frequent colonoscopies.

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Can you talk a bit about the experience of getting a colonoscopy? And if that's changed in any way over time?

Well, that's profoundly unpleasant. Not profoundly, it's unpleasant. The prep for it, the colonoscopy itself. The prep for it when you have to drink all that stuff.

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But you know, that's one day. And it's something that is tolerable. And I am looking now, instead of drinking a gallon of stuff, my son got a half gallon. And you need to drink so much of it. And for the first time I thought a little bit, it burned my rectum. I don't know why it would have done that. But it really nailed me and changed my bowel habits for a good month afterwards. That I've never had before. So there are, again, until you experience them, all the side effects and all kinds of things, they don't tell you about them or predict them till you've had them. And then for the most part they don't really know, the medical staff don't really know how to deal with them or what they are unless they've had them themselves. And so that's one more constraint that, I'm pretty sure for people there are side effects. And I think that it isn't powerful, near powerful enough for me to not do it. I'll prepare differently for my next colonoscopy. I'll expect it a little bit more. But it won't change my willingness to one done I don’t think. But conceivably, that could be an obstacle to getting a colonoscopy, especially when combining it with, well, “I don't have enough money to do it” and, “I don't like doing it.” I fear that for a good many people that may well be an obstacle.

 

After Jack had a portion of his colon removed, he experienced complications.

After Jack had a portion of his colon removed, he experienced complications.

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And then in October, I don't feel like eating today for Sunday dinner. We always have a Sunday dinner with everybody. I didn't feel like eating anything. Get up in the morning and I feel ill. And so going to the emergency room. And I'm looking up on the web all these things you can also-- you can have all these things that you're wrong about. And actually, self-diagnosis generally is not very accurate. And so I went in. And again, excellent medical care. Went in to [CLINIC], which is very good. And I'm feeling nauseous and all kinds of things. I think he's an NP, too. I don't know. These men and women know as much as the doctors do for the most part. And he looks at it and says, “no. I think we're going to send you right into the hospital.” And diagnosed, he thought it was twisted bowel. Which after having messed around in there, it can twist up again. That can be very dangerous because it shuts off and then it can go bad and it can die and all that kind of thing. So then I go into the emergency and then got in for twisted bowel. And there they put that, man I've got to drink all that stuff, only it's not going anywhere. And put the nasogastric tube down, which is not a lot of fun. And then go through all the operation. Get up the next day. And a nasty recovery for that, too. They had taken the tube out. They had to put the tube back in again. And they put it in, oh, and it felt better. And the nurse looks up and she says, “oh my god”. And it pumped out all this black stuff. So you don't need to hear all this. But this all has to do with, it's all related to the Lynch syndrome. You can end up in the hospital multiple times-- and probably this is something people don't want to hear but it's possible-- because they couldn't get the polyp out from the colonoscopy. And that all is actually Lynch syndrome stuff.

 

Jack points out the special impact of an inequitable system on people with genetic syndromes.

Jack points out the special impact of an inequitable system on people with genetic syndromes.

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It also raises a clear awareness of the inequities associated with medical care in this country. When I look and see the absurdly expensive charges that get laid not so much to me because most of it gets covered. But to anyone-- I mean, we're talking $6,000 and possibly more. And a clear awareness of how inequitable the system is, and the changes that are needed to, I think with someone who does not have adequate health care, which is a very large number of people who aren't covered by insurance. And the importance of having health care, so it certainly generates an awareness not only of one's own personal risks and how it gets done but for anybody who's paying attention to the importance of everyone having access to the kind of health care that happily I have access to. And I think that is as important as anything else and actually is something that everybody in [INSTITUTE] might want to raise as they talk to people of varying incomes and backgrounds, of h ow it is you're going to deal with this in the future? I'm appalled at the cost. And it does you know, reinforce a commitment to making political decisions that allow more people, everybody who might have this syndrome. I mean, the cost of it is clearly inequitable. And I don't know why. But it has political ramifications in the sense that I'm aware now. I'm much more aware now of how much things cost because my insurance through the [INSTITUTE] and that is very good indeed. And to find that I only need to pay you know $300, $324, which I can afford. But there are many people who cannot afford $324, of the nearly $6,000 that it takes to be consistently treated prophylactically. Not even for the-- but prophylactically. And I don't know what it would mean for me, as a social scientist, very interesting to-- and I wonder from your study, how many, not only the income levels of people who are being, and what does it mean? A concern that I do not have is, how much is it going to cost me? Even if it was only $324, for many people that would be a substantial impediment to their own health care and to treating them the way they-- much less going in. How can a colonoscopy cost $6,000?

 

Jack talks about the “political ramifications” of access to care for people with hereditary cancer.

Jack talks about the “political ramifications” of access to care for people with hereditary cancer.

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It raises a clear awareness of the inequities associated with medical care in this country…a clear awareness of how inequitable the system is, and the changes that are needed….so it certainly generates an awareness not only of one’s own personal risks and how it gets done but for anybody who’s paying attention to the importance of everyone having access to the kind of health care that happily I have access to.

 

Jack’s worries are limited because he feels in control of his cancer risk.

Jack’s worries are limited because he feels in control of his cancer risk.

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If I was facing a 20% increase in the risk of my having cancer, but it might or might not happen, I think that probably would affect me more. But since I can go get a colonoscopy, and largely be free of the worry of whether I might get it or not, I believe I'm kind of free of that. So no, it has not affected my own sense of mortality or risk or concern. I don’t think-- I don't have a concern with that. I will simply get my regular, just like getting my regular tetanus booster or whatever comes up. I'll do that one when I need it because it's so predictable.