Susan

Age at interview: 71
Outline:

Susan realized she had a strong family history and elevated risk of cancer from participating in a research study. She was offered genetic testing when hospitalized for endometrial cancer. Because she did not have children, she didn’t understand why she should be tested. Later upon a physician’s recommendation she was tested. She found out she had Lynch syndrome and had increased risk for specific cancers. She finds this diagnosis helpful because it allows her to take responsibility for managing her risk through diet and exercise. Receiving regular cancer screening gives her peace of mind.

 

Background:

Susan is a 71-year-old White woman and lives in an urban area in the Midwest with her husband in a house they had built. She is a retired lawyer and social scientist.

Cancer-Related Experience: Cancer

Type of Inherited Risk: Lynch syndrome

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Susan was offered genetic testing while hospitalized for endometrial cancer. She refused because she did not have children and never received an explanation of how this testing might be helpful. A few years later Susan participated in a research study on hereditary cancer. She learned that she was at increased risk of cancer because her father, grandfather and several aunts also had cancer. This information led her to insist that her family history be part of her medical record. Because of this history, later, a physician suggested she get tested for Lynch syndrome.

Susan feels like the knowledge gained from genetic testing is helpful for knowing how to minimize future risk and to encourage personal responsibility. She works to keep her weight down, eat green leafy vegetables and limit sugar and to exercise regularly. She also receives regular colonoscopies every 6 months to a year as recommended by her physician, an endoscopy every 2 years and skin scans by her dermatologist every 6 months. The regular testing gives her peace of mind. She has learned to advocate for herself to get symptoms checked into rapidly by asking for a triage nurse rather than a receptionist for scheduling.

After learning she had Lynch syndrome, and what it means, Susan contacted other family members and encouraged them to get tested. Several had not received this recommendation before Susan mentioned it. While some family members did get tested, others did not seem interested in learning about Lynch syndrome. Susan also suggests genetic testing to friends if she hears about a family history of cancer on the same side.

Susan was very interested in telling her story because she feels Lynch syndrome is unknown, unlike other genetic risks such as having a BRCA mutation. She finds the information out there “to be either overly technical or very non-helpful once a person has had an initial introduction to the subject of Lynch syndrome.” She encourages others to learn about their biological family history in order to help make decisions about genetic counseling and testing, and to talk to their children in general about cancer so they feel comfortable talking about it. She also suggests that it is scarier to not know that you are increased cancer risk rather than not knowing at all.

 

Susan doesn’t see a compelling reason to be tested.

Susan doesn’t see a compelling reason to be tested.

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When I was in the hospital with endometrial cancer I was asked whether I'd like to have a genetic test. And I said no, I don't have any children. So in effect, I was thinking, “why do I care? I have had cancer, it's over and done with. I should get through this. If I get through this, I don't have any children, so what difference does it make? Why should I care about having a genetic test?” No one told me that there were specific things they might have been looking for. But it's also not clear to me that they were looking for Lynch syndrome at that time, because I had cancer in the mid-'90s, and no one who came around to talk to me and wanted to discuss genetic testing really had any explanation about why it would make any sense for me to have a genetic test. 

 

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.

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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.

 

Susan wishes she had realized earlier that care for rare conditions is better some places than others.

Susan wishes she had realized earlier that care for rare conditions is better some places than others.

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Absolutely, I wish I had known earlier that medical care varies so much in terms of the knowledge, capacity, capability, and of- knowledge of available resources, as it does…I also think that the public health networks are good at developing data. But I think it's very hard to move the data, and for instance, the awareness that medical treatment will vary, depending on whether you go to a regional hospital or you go to an academic medical center. They’re very [um] - They have some difficulty in communicating that to the public. And I don't think they want to communicate that to the public. So I don't think the general public really knows about what information is out there.

 

Susan is frustrated that improved protocols for treatment aren’t used everywhere.

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Susan is frustrated that improved protocols for treatment aren’t used everywhere.

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I have learned throughout all of this that just because some researchers in one university have decided that there's a better protocol for treating a condition, that information may take years to get to the family physician. And in my father's case, he probably would-- he could still be alive today. Let's see, could he still be alive today? Well, he probably could have been alive until maybe 10 years ago. He would have been in his 90s then. But he could have lived into his 90s rather than die in his 60s, I think, if he had simply had a physician who knew that given the location of his colon tumor, his colon cancer tumor, he would have needed chemotherapy as well as surgery. But medical information is not disseminated as quickly as changes in the law.

 

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.

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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.

 

Susan says her friends are not particularly interested in her cancer risk experience.

Susan says her friends are not particularly interested in her cancer risk experience.

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I have found that friends haven't been particularly interested. I think most people have a limited interest in what they perceive as other people's problems, unless it somehow reminds them of something they should think about. I’ve actually been surprised at how little interest people have had. But maybe my friends are people who haven't had any reason to be concerned about the conjunction of colon cancer and endometrial cancer in their own lives.

 

Susan describes learning what language to use.

Susan describes learning what language to use.

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And finally, I got in to see this person. And then I learned the word to use was lesion. And so I then made some subsequent follow-up calls saying I have a lesion, and I got in right away. So I didn't have the vocabulary for what triggers the process. So what I have learned is that when a person calls about a medical problem, it's important to ask to speak to the triage nurse. Because simply asking for an appointment does not necessarily give one the [um] timing and the right physician at the appropriate time. So I would say to anyone who thinks she has Lynch syndrome, should probably say I need to talk to the triage nurse, probably of just one's internist.

 

Susan talks about the challenge of self-advocacy for women.

Susan talks about the challenge of self-advocacy for women.

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I think that [um] a lot of women are still a little reluctant or they haven't quite caught on that there are decisions they can take that they, they can take on their own behalf. And they don't need anybody's permission for it. So money, having one’s own resources, having control of resources, gender, are all very much interconnected.

 

Susan says if someone mentions their Lynch syndrome, find out what’s on their mind.

Susan says if someone mentions their Lynch syndrome, find out what’s on their mind.

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Be willing to talk to them about it. Don't be frightened. Don’t just pass it off as, oh, well, that's a piece of information, I don't know what to do with it. Don't just say, “oh, well, that's interesting, thank you”, and change the subject. I think if people mention it to you, it's because they either are worried about it, or they'd like to talk with you about it. Or they think you may have some reason why you should know about it. So I would say in a situation where somebody mentions Lynch syndrome, at least find out what's on their mind. And one of the ways to do that is say, “well, if I'm thinking about my own family, what should I be thinking about.” You're saying know your family, but what do I need to know about my family. And the answer is there is have they had cancers? And what cancers have they had? And which line-- which side of the family. Because most people, if they've paid attention as they're growing up, at least know who their relatives are.