JanLynn

Age at interview: 47
Outline:

JanLynn had not thought much about her family history and genetic testing before symptoms led to an unexpected discovery of endometrial cancer. Following surgery, she was told the cancer had spread and more treatment was recommended. Upon requesting a copy of her labs and other testing, she read through these and learned she had Lynch syndrome and should see several specialists in follow up. She had not been told about it personally prior to finding this out in her paperwork. Reading online about Lynch syndrome created a lot of anxiety particularly because she is a private person and prefers to avoid doctors because of trauma that occurred as a child.

Background:

JanLynn, a 47-year old White woman, was diagnosed with endometrial cancer at 45 and then Lynch syndrome when she was 46. JanLynn lives a happy life in a suburban area in the Midwest with her husband. 

Cancer-Related Experience: Cancer

Type of Inherited Risk: Lynch syndrome

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After a childhood accident she doesn’t remember, JanLynn was involuntarily taken to a clinic for three weeks where she had to undergo a painful procedure. For as long as she can remember then she has been fearful of medical doctors. So she focused on her health through eating a good diet and exercising regularly, and limited her contact with doctors.

Her experience changed significantly after seeing a specialist for constant vaginal bleeding. An ultrasound and biopsy identified cancer, and several medical tests and surgery were quickly performed. At a follow up appointment, she learned that the cancer had spread and she would also need chemotherapy and radiation. She also learned she would not be able to work during the treatment. This rapid sequence of events was overwhelming because there was little time to grieve and absorb the information that was given. The timing of her diagnosis was also difficult because, except with her husband, she pretended that nothing was wrong so as to not to ruin her family’s holiday season. Afterwards, she told her children because she thought it was important that they knew before those outside the family.

JanLynn learned she had Lynch syndrome from the paperwork that was given to her within a packet of test results. Because it was evening when she reviewed this and she was unfamiliar with this diagnosis, she searched the internet and learned about her risks of multiple cancers. When she called the next day angry because she hadn’t been told, she received an apology but was told that this testing was routine. She remained angry because “genetic testing is not routine to me” and because she was asked to see a genetic counselor and have a blood test and had no idea why or what it would be like. As a private person, she found answering questions about her personal history difficult during the genetic counseling session.

She describes receiving the diagnosis of Lynch syndrome as feeling like “a death sentence” and “walking with a ticking time bomb on you.” Having gone through an operation for cancer already, she worries that there “is only so much the body can handle.” The increased risk has caused her to be hypersensitive and hypervigilant about her body and how she feels. She also has found it frustrating that certain doctors she has seen in this process have not been direct with their communication, and instead have been overly positive. She encourages those with Lynch syndrome to find at least one support person who is not intrusive, can just listen rather than ask lots of questions and can validate.

 

JanLynn was shocked to discover her genetic risk, and hypervigilant afterward.

JanLynn was shocked to discover her genetic risk, and hypervigilant afterward.

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I had requested a copy of lab reports and things like that. When I got back to my hotel room, because interestingly enough, my daughter had surgery scheduled the next day, I was reading through the paperwork and read that I had Lynch syndrome, but I had not been told. And I had no idea what that was. So I looked it up, which was always a bad thing, but it was evening. So we-- my husband and I looked at information about Lynch syndrome and then called the next day to say, “you know what is this?” And I was not told that I was being tested. That apparently, it's some routine tests that's done. Only genetic testing is not routine to me.
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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.

 

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.

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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.

 

JanLynn was upset that she had no explanation about why she was sent to the genetic counselor.

JanLynn was upset that she had no explanation about why she was sent to the genetic counselor.

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I will say that as another, something that I think a genetic counselor can do. When I walked into my doctor's office there was no explanation of why you're here and what the purpose of asking you all of these questions. Why it is that you need to see a genetic counselor because I think they assume that you know. And simply to ask, “do you know why you're here? Do you know what this means? Do you know what we're going to be”-- and then if they don't, then take the opportunity to explain because I had no idea. I mean I walked out of there. I was angry through the whole appointment. Doctor [NAME] probably thought - my doctor probably thought I was a very angry person which I was. But I had no idea what was going on. I still don't remember anything that she said. I remember most of the questions. But I wasn't really listening because I was caught up in my anger of “I don't even know why I'm here. Why am I here?” Which leads to, “why did I get cancer?” You can go down a really long road with that. But I would say that for doctors who had received a referral doesn't mean that the patient knows why they got the referral or what it means or what it's going to mean or any of that. Because I don't think a lot of people go in knowing and knowing the questions to ask.

 

JanLynn wants her doctors to simply answer questions and not talk ‘around the world’ in complicated ways.

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JanLynn wants her doctors to simply answer questions and not talk ‘around the world’ in complicated ways.

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So part of it is presentation, OK? So not to use a savvy voice with me. That really bothers me. Not to talk around the world about an issue and then say what it is. Just say it because the whole time you're talking around the circle, I'm not listening. I don't hear it because I know you're getting to something that I need to know but you're not getting there. You're taking forever. When asked questions, simply answer the question. And if the answer is, “I don't know,” I do know there are things the people don't know. It's a frustrating response but there really are things-- or you know, to say, “I don't know for sure but these have been the experiences of some other people.”

 

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.

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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.

 

JanLynn says she felt blind-sided when Lynch syndrome was identified through tumor testing.

JanLynn says she felt blind-sided when Lynch syndrome was identified through tumor testing.

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I was reading through the paperwork and read that I had Lynch syndrome, but I had not been told. And I had no idea what that was. So I looked it up, which was always a bad thing, but it was evening. So my husband and I looked at information about Lynch syndrome and then called the next day to say, “what is this?” And I was not told that I was being tested. That apparently it's some routine tests that's done, only genetic testing is not routine to me. So I would have been less caught off guard I think if I had known and had signed consent to say yes. Now, it may have been written into consent, I have no idea. And I haven't followed up on it because, bottom line is, I have it and I can't change it, so.

 

JanLynn wants providers to communicate the purpose of the patient’s visit.

JanLynn wants providers to communicate the purpose of the patient’s visit.

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When I walked into my doctor's office there was no explanation of why you're here and what the purpose of asking you all of these questions. Why it is that you need to see a genetic counselor because I think they assume that you know. And simply to ask, “do you know why you're here? Do you know what this means? Do you know what we're going to be”-- and then if they don't, then explain, take the opportunity to explain because I had no idea.