Overview

Merle: It's really important for people to be able to see themselves or see some part of themselves reflected. And for me, I did not really have that.

Even now, as we're recording, trans and non-binary people are very underrepresented. And to have the intersections that I do, as somebody who is queer, non-binary, mixed race, I think that we need more people from these intersections coming forward.

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John: I saw this as another avenue, another place to put the story out there that men get breast cancer.

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Lisa J.: I really loved, and still do, and appreciate, the purpose of this, in terms of, you know, relating to medical professionals and students and community people.

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Casey: If I can just sit there and tell a story, or tell my story, and be open about it, honest about it, and maybe it'll make a difference to one person and one physician, maybe one somebody, then I'm OK with that.

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Peggy: I wanted to tell my story for somebody who's around my age that you can, you can do it. You know, it's hard at first because you're young. But I want them to know that they can do it. If I can do it, you can do it.

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Maria H.: Thank you for being here, for taking the time to research about this and to want to help more people through someone’s testimony, and I hope that this will be of some help for people who will go through this.

Bueno pues, primero gracias por estar aquí, por tomarse el tiempo para investigar acerca de esto y querer ayudar a más gente a través del testimonio de uno, y espero que si sea de algún ayuda para las personas que van a pasar por esto. 

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June: The reason I wanted to tell this story is because I was so afraid when I was diagnosed. And there was nobody out there to tell me what kind of things they had to go through.

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Janice: If I could assist anyone, in helping someone or helping doing the research or helping doing, anyone who might find this site in some kind of way, it's important to me.

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Linda: Because I feel like the more research we have and the more knowledge we have, if I can help in some small way, I want to do that.

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Asante: One of the things, you know, for people like myself seeking education.

I think organizations like yours - you put me on the right path. And I think that it's important that for people who are in my situation who want so badly to do something, you know, that there are, you know. My father used to always tell me that education is knowing where to find the information.

Dr. Amye Tevaarwerk: My name is Amye Tevaarwerk. I am one of the Breast Cancer medical oncologists at the University of Wisconsin Carbone Cancer Center. I also happen to be the director of our survivorship program both, clinically for Breast Cancer, but then for the whole overarching program for the University of Wisconsin Carbone Cancer Center. And I think that’s probably part of what attracted me to this work, the need to think about the patient experience and the survivor experience. But then, to amplify voices that might be less heard from whether it is because we are looking at men with breast cancer, transgender patients, or patients who are having an unusual sort of experience moving through the system related to the timing of their diagnosis or where they are otherwise.

Breast Cancer is one of the leading cancer diagnoses in the US. When you think about sort of the cancer survivorship spectrum, and you are looking at all the sixteen plus million individuals who are alive in the US. The plurality of them are Breast Cancer survivors. Right so Breast Cancer is a very common diagnosis. People often do well for a long time and thus you know there is a pretty high prevalence of Breast Cancer out there as well. And so it’s just a very common diagnosis that is important to speak to from that perspective.

Some of the research we did early within our survivorship program spoke to the need for survivors to hear from other survivors, women or other individuals who had gone there before them and had important messages. And there is a number of ways you can do that. Right so you can try to work with peer survivors, you can try to funnel that experience through the treating physicians. But this is another way for people to very broadly access that survivor experience right, in a way that allows them to approach it whenever they are ready, in a both audio way, visual way, you know at a time that is convenient for them. I mean, you know, how many other times are you going to be able to maybe listen to someone at 1:00 am in the morning, if that is when you are up and worrying about something and need to sort of hear from other survivors. So that’s to me some of the most important pieces about this work is that it makes that broad depth of experience available in a way that it might not otherwise be.

So part of what we are always trying to do with clinical education is bringing the voice of the – of the patient, or in this case the survivor to the forefront and let people hear it for themselves. And there are times when you actually bring the survivor in and have them talk and share that experience. But again, you know that sometimes there is a commitment that the survivor can’t make because it’s – you want them to come in at 3:00pm and they work, or you know perhaps they have passed on in the case of someone with metastatic disease. And so being able to sort of record that and – and utilize it and insert it in multiple different places and multiple different ways is a really powerful tool that allows us to amplify that voice. 

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Dr. Lucille Marchand: Hello I am Dr. Lu Marchand, and I am a professor at the University of Washington in Seattle. I am the Farber Endowed Professor in Palliative Care

Education, and the Executive Director of the Osher Center for Integrative Medicine.

When we are faced with cancer, we have no idea how we are going to walk in that journey. But hearing the wisdom, the hard wisdom of our fellow travelers along the cancer journey can help us be brave, courageous to try new things, to be curious, to connect with others, and then reevaluate what is most important and precious about our life and seek all the therapies that are going to get us to our goals. And yet they are in keeping with who we are in our deepest selves, who we are, so that this cancer journey can be one of growth rather than crush us in terms of our being.

When we hear your stories we always learn something new and that’s the seed, that we need to then create other studies, other projects, so we can keep adding to the wisdom, and the knowledge that we have about what does it mean for people to have breast cancer, go through the treatment, and then heal, and grow hopefully from that experience, and really find joy and meaning in their lives. Perfect. So these stories are so important for learning what hasn’t been learned yet, but all of you have learned in your own way about what this journey is about and that’s what we want to learn from you.