Overview

Support for this project was provided by the University of Wisconsin-Madison Institute for Clinical and Translational Research funded by a Clinical and Translational Science Award (CTSA) program, through the NIH National Center for Advancing Translational Sciences (NCATS), grant ULITR002372, and the University of Wisconsin School of Medicine and Public Health Wisconsin partnership Program grant #3086. Additional support was provided by the Center for Patient Partnerships.

         

 

In this section you can learn how a wide variety of people experience a known genetic or inherited risk for several kinds of cancer. Members of our research team travelled around the United States to talk with 47 people in their homes and communities. Specifically, the genetic mutations people we interviewed are living with include Lynch syndrome, polyposis syndromes, and various mutations associated with breast and ovarian cancers. People we interviewed described both positive and negative aspects of living with a heritable cancer or cancer risk, and of getting “personalized” screening tests and treatments.

People who shared their stories for this website did so for a variety of reasons. Their voices and personal experiences are diverse. But all shared a belief that making their personal experiences public would be useful to others.

 

People’s Experiences With Inherited Cancer Risk.

People’s Experiences With Inherited Cancer Risk.

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Christian: If I can provide any help to anyone, I would like to try and do that. Maybe to give a different perspective from someone younger, I don't know, or different, but just, I thought I'd help. I have not been in a position to be able to do something like this before, so I thought that it was important to reach out and provide what I could. 

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Heather: It's really about just not being ashamed or shy about things. I think the more we talk about them, the more good it's going to do. I spent a couple years being really hesitant to talk about Lynch syndrome. And I ultimately came to this place of-- I've had some conversations where I really raised awareness about it. And any way that I can contribute to that, it's going to be a ripple effect to ultimately, hopefully lead to more interest, more funding, more research, and then more knowledge. 

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Victoria: And thanks for, for inviting me to give this testimony, to be able to be able to share something, not very, not much. Sometimes I feel that it is still difficult for me, but I feel that one day could be a – how could I say to you? A strength for another person to support them if in any moment she feels sad or – um – and I can share my story. Why not support another person? Because I had that support and now, now I feel a little more like I can tell it. And now I am doing it.  

 

Y gracias por, por, por invitarme a dar este testimonio, por poder compartir algo, no muy, no mucho. A veces siento que todavía se me dificulta, pero yo siento que algún día pueda ser un-- ¿cómo podría decirle? Una fuerza para otra persona pueda apoyarle si en algún momento ella se siente triste o—este--y yo pueda compartirle mi historia, ¿por qué no apoyar a otra persona? Porque yo tuve este apoyo y ahora ya, ya me siento un poquito más así como poder contarlo. Y ya lo estoy haciendo. 

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Paul: So not everybody is going to be--they think they're being supportive, but they're not. I've been lucky enough to have friends and family who are very supportive. But yeah, basically, it just and-- the issues that we have are not always going to be visible. And again, if you haven't gone through it, it's hard to understand it. So just listen and, you know, and just believe the people when they tell you about it. 

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Thomas: We don't hear nothing about cancer until a celebrity's face is plastered. Like I said, cancer is a celebrity that nobody don't know about. Stop using celebrities to talk for us. Put us up here. 

Clinicians involved in this project also believe that a deep understanding of patients’ experiences in this rapidly-changing area of medicine, which is sometimes called “personalized medicine,” will make a difference.

 

Clinicians Talk About The Project.

Clinicians Talk About The Project.

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Dr. Jennifer Weiss: Our knowledge of genetic mutations and how they’re related to cancer risk is rapidly expanding. And the topics of hereditary cancer risks and genetic testing can be very overwhelming to both patients and providers. So, I was drawn to this project to better understand how I could have more meaningful conversations with my patients and their family members about this complicated health issue.

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Dr. Xavier Llor: This is a project that gives patients voice and really, we can learn the concerns that they have. They can also see that they are not alone in the struggle and that there are other patients that are going through the same issues that they are having. Therefore, really being able to really understand that there are other people going through the samethings can be extremely powerful. So, I think having that perspective from patients—their feelings and their concerns—is a very valuable tool that we often don’t have.

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Karina Brierley: One of the things I find compelling about my job—and also that arereflected in this project—are that people’s stories can really be powerful and meaningful and moving. So I felt that that was really compelling about this project. And hopefully that our patients would find this as a very rich source of information and also kind of find themselves reflected in the stories that other people tell about their challenges dealing with hereditary cancers. And that would give them this kind of virtual sense of community and support. And also as clinicians, it gives us a kind of important window into patients stories beyond what we see and deal with in terms of the disease clinically that I think that’s very important in terms of translating what we’re telling patients to their lives every day and can help us better care for them, better support them, help them use the information that we have to make a difference in their lives that’s practical given the context of their story and their family.

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Dr. Kala Visvanathan: I think this is a very unique program which actually has focused really on the patient experience and learning and enabling patients and family members to learn from the experience of another patient. So it is really one patient teaching another patient.

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Dr. Kala Visvanathan: I also think it may actually help us create more personalized interventions that will increase the uptake of testing among specific groups of individuals like those minority patients as well as underserved patients who right now are not eager to come and test.

Cancer genetics is a rapidly emerging science. People whose lives are affected by it are watching it change even while getting testing and treatment. Almost everybody we interviewed—whether or not they were diagnosed with cancer—grappled with uncertainty for themselves and for their family members. Clinicians who are part of this project also emphasize how quickly knowledge in this area is evolving.

We hope you find the information on this website to be helpful, illuminating, inspiring and reassuring.