BONUS: MJ DeCoteau & Michelle Audoin | Rethink Breast Cancer | Driving awareness and visibility

In this bonus episode of the podcast, we welcome back two very special guests. MJ DeCoteau is the founder of Rethink Breast Cancer, and Michelle Audoin is an educator who was diagnosed with metastatic breast cancer in 2017. The two joined forces with Rethink to create Uncovered: A Breast Recognition Project, which shares the stories and images of Black women while skiing a light on how women of colour often see their needs overlooked and underrepresented in the cancer care community.

Listen to this conversation to hear what brought the duo together, and how this very important partnership came to be. This episode is full of behind the scenes moments, as well as insightful reflections on why the Uncovered campaign was so important.

Rethink Breast Cancer aims to empower, educate, and support all young people impacted by breast cancer. In this series, we will be discussing and re-thinking the narrative around breast cancer in today’s world. As part of this series, you will meet women who are making a difference as leading changemakers in the community. Everyone on the Rethink Breast Cancer team is focused on offering relevant and accessible spaces for the new generation of young people affected by breast cancer, and we are so happy we can share their knowledge on this platform.

Thanks to our partners at Rethink Breast Cancer for their support of this episode of The Brand is Female.

This season of The Brand is Female is brought to you by TD Bank - Women Entrepreneurs. TD is proud to support women entrepreneurs and help them achieve success and growth through its program of educational workshops, financing and mentorship opportunities! Find out how you can benefit from their support!

Full Episode Transcript

Eva Hartling: MJ and Michelle, it's such a pleasure having you both on The Brand is Female. I'm so grateful. We get to have a second conversation this week. Welcome.

MJ DeCoteau: Thank you. Great to be back here.

Eva Hartling: And we are it's, it's the month of October. So we are officially in the month of October now, which is officially the month for breast cancer, and we've had conversations I've spoken with you, MJ, I've spoken with you Michelle. And I think, the work that you're doing at what rethink is so important and really. Reframe the experience of breast cancer for women and you bring such a wealth of partnerships and tools to the table.

So I'm glad we get to speak again. And I want to start by asking you, and maybe that's a question for you, MJ, rethink. Really evolved over the years, since your foundation. And do you want to talk to me a little bit about what that evolution has looked like? And in there, I think we can't ignore the reality of the past, 22 months or so.

I can't believe we're it's gonna, it'll be two years of. Pandemic start in a few months basically, but I'm sure that has, and we've talked about that in our own conversation a little bit. It's helped further shift your, your positioning and the impact you're looking to have in a community.

So I'd love to hear. What that shift has looked like, and that evolution has looked like from your point of view.

MJ DeCoteau: Yeah. And it's been 20 years of shifting and evolving to stay relevant to the community and to stay relevant to the community's needs to stay relevant to the way young women, operate in our world and just to, respond or try to get ahead of changes.

So even pre-pandemic, we were seeing. The struggle of millennials, they're the first generation to earn less than their parents. We saw, me too and women's rights, being more amplified. So that gender equity, diversity, gender inclusion. Really taking off. And then I think, remember the world was on fire right before the pandemic we had, Fridays for future the climate strike.

So we were already starting to really think, even though we're a breast cancer organization to be relevant to the conversations that are out there in the community, we knew. We take that all in and we respond to that. And so then suddenly we have the pandemic and during that global pandemic, black lives matter had an amplification and important amplification moment due to the murder of George Floyd.

We saw indigenous reconciliation, which. And started a few years ago, but really was, being heightened. Of course the economic downturn for some during the pandemic while others were making a lot of money during the pandemic. So a lot of things going on a mental health crisis, people feeling isolated, and here we are this breast cancer organization trying to figure out.

What are the needs of our community? How can we respond? Not just during the pandemic and increasing, support and digital support and making sure our community has the information they need, but almost feeling like we're on this transformative moment as a society, as an organization. And that, one of the most tragic outcomes would be if we didn't, respond in a really bold way, if we didn't rethink. If I can use that kind of pun. That's what we did. We are, thinking about all the intersectionality of all of these different perspectives and how it relates to breast cancer and how, in In a society that's been impacted by COVID, the economy influenced by COVID and community conversations that are focused on anti-racism focused on social equality.

How can rethink bring that health equity perspective more forward. So I know you and I talked about that intentional shift rethink has been making from being that marketing savvy, known for branding, the cause for young people to really driving impact and making change to improve outcomes.

So evolving from hip cool boutique breast cancer, charity to, using that influence. We've built to open doors for others. How we can do that in an authentic way is through collaborations and collaborating with community organizations. We started to realize, wow. One of the strengths that rethink has is listening is creating, connecting with people, listening to the community, and then as they get that support from us, listening to gaps in care needs, they may have, and there's been that rapport and that trust belt where they can then approach rethink with an idea.

And that is exactly what Michelle did. And I know you already talked about uncovered. So we started to see that model of. Okay. Here's an opportunity where we can collaborate directly and try to make broader system change and try to help others. And so that's what we've been doing and we see an opportunity to do a lot more of that moving.

Eva Hartling: And from a practical standpoint, and this may be relevant for anyone listening, who is looking to build community around a specific cause and really looking to have impact that will truly be felt and seen. And. How do you connect with the community? And, did the uncovered project may be a very good example of how this collaboration took place, but how do you ensure you're building those bridges with your community?

MJ DeCoteau: I think we're in a constant state of discovery. Our model is, you start by bringing people together and trying to build our network and then. Listening, like really so much of it is through that connection. We're trying to foster a space. That's here for people to connect for us to connect, listen.

And then the next step is to try to empower and rethink breast cancer together. Michelle, we collaborated with you on a metastatic campaign that we were doing. So that was really our first collaboration. And then I'll let Michelle, I know she's talked to you about uncovered, but maybe she can speak to this idea of authenticity through collaboration.

Michelle Audoin: Absolutely rings true. It is about collaboration. And I feel like our worlds collided at precisely the right time. As we were saying, the world was waking up and seeing so many of the injustices. You know against indigenous people black lives matter. The me too movement. All of this was coming to the forefront.

And then we throw on top of that, the pandemic. And then me struggling with my multiple identities. I'm a young mom, I'm a young mom with breast cancer. I'm a young black mom with breast cancer. I'm a young black mom with metastatic breast cancer and trying to see myself in the committee. And that's something that I was not finding.

I didn't see it in the hospitals. I didn't see it in the brochures. I didn't see it online. And it's really hard to process your diagnosis and to go through treatment when you don't have support of the community. And that's how a lot of our conversations with rethink began. It was MJ listening to.

My perspective and where I was coming from and seeing the need that we need to support women in this community. And young black moms are not represented in the metastatic breast cancer community. A lot of people think of metastatic breast cancer is the old woman's stage of cancer, but young women get it too.

And then you throw race in it as well. And it's you're the rarity of the rare, it's just not seen and talked about. And so it becomes an isolating experience. And I thought I can't be the only one going through this. And so in collaboration with MJ and rethink we realized this was an opportunity to connect with other women and to change the discussion, the narrative, and to create safe spaces for women to find themselves in communities.

We did that, with metastatic breast cancer

Eva Hartling: and that's

Michelle Audoin: No, I was going to say, okay. Yeah, we did that, with going campaigns and as well as our collaborative partnership with.

Eva Hartling: And that's such fantastic work. And there, we were witnessing the impact that this is having for the community. I think when we talk about, there's been a lot of conversations around intrasectionality lately and given that, I think with COVID has been really a spotlight shown on health inequities in our modern day society.

And we know that Canada is no exception. This is not just something that's going on in the us. It's a reality here as well. You've brought up the example of uncovered. We've talked about this a little bit in our conversation together. Michelle, what are other ways that you are looking at rethink to make sure that you are, addressing inequities that you are addressing or trying to be intersectional and bring in kind of those, that diversity of perspectives and experiences, and then.

Kind of pivots and that word's been overused, unfortunately in the past little while, but, or I can say shift and I like how you were saying it's about rethinking, rethink MJ. So how do you make sure that shift is truly taking place? Are there other examples within the organization of things or initiatives that you would have put into place or things that you're looking to do in the next little

MJ DeCoteau: while?

Yeah. Thank you. It was so many things. It's funny to use the word pivot, to use the word chef on the one hand I'm very aware of we're want to build a new. Breed of breast cancer charity, again, just like we did 20 years ago. And one that's really thinking from this more intersectional system change lens.

The funny thing is the irony because I love that idea of I'm a change maker. I want to be a change maker, I want Rethink to be a change making organization. System change is slower than I like to work. But that slowness is so important. And I think that's where you I'm seeing a little bit of a bump up against, the more traditional corporate ways of being in the world and where there's sometimes a disconnect because building bridges with an organization you don't, or sorry with community organizations, you don't just approach, indigenous people and say, hi, we're rethink breast cancer.

We're here to help you of course you need to really build that trust over time and approach opportunities, very thoughtfully. And that often means a little bit slowly. Like on the one hand, what I loved about, when we worked with Michelle last year, when she came to us with her idea, we were able to say, let's do it.

Let's just get started on something. Let's shoot these women and tell their stories and create a resource. The trust had already been there. Like we had been working with Michelle she'd been part of our community. And as I said, we'd had lots of back and forth about metastatic breast cancer and metastatic breast cancer issues.

She and I had, a nice kind of email relationship and there was an Michelle knew other people on our team. It's that kind of personal connection that I think is important. So that. It can't be transactional. Like it's got to be. Really taking that time to understand, where are the opportunities?

You have to do a lot of stakeholder consultation and really find out, okay, we're listening to our community. We're hearing these needs. Now we've got to go and do research and find out, how much of this is happening and where and when and why, and what are we hearing from, the healthcare professionals and what are the opportunities.

To make some change. And from there you can strategize and move things forward. So learning that, as much as we want to improve things and help others it's it takes time to do it properly. But that also doesn't mean. I get the pace, I get so frustrated by bureaucracy, believe me that, rethinks history was like lawyer too much bureaucracy in healthcare.

So it's finding that balance, we're working with, we've got, incredible women on our team, Jasmine who works really closely with Michelle exploring some of our, desires to do. More in, in terms of health equity and diversity and inclusion system change. And I don't know, Michelle, maybe you can speak to, you've been the one having a lot of those conversations with Jasmine and just how to navigate, how do we move this forward?

And there's just so much opportunity for change when it comes to. Creating an organization that wants to help make the world a more equitable place, especially even just focused on health equity. There's still so many directions and so many issues we can address

Michelle Audoin: Talking about change and that, things aren't instant.

One of the things over the past year since uncovered was launched just in consultation with MJ at rethink. We agreed that there was a need to do more and to continue this conversation, it wasn't like we put out this resource and it was well received. It's like there's still work and trust that those relationships need to be built in the community.

And so we, we put together an equity, diversity and inclusion working group. So there's three of us on this team currently. And we were working together with the women who were part of uncovered this year, but also looking at why don't people, asking ourselves why don't people know about the resource?

It was launched last year. It was out there and saying that, we need to target the community, the black community, the indigenous community, the south Asian and Asian communities, the immigrant communities, those who would benefit most from this resource. And those are the ones that are often represented.

And so looking thoughtfully, how can we build connections and relationships so that, they understand their breast health and their health. So that's been a really important step forward for us, but again it's not a one and done kind of situation. It's about listening, getting feedback and going into the communities and making them feel seen and heard.

It's very hard to. To want to jump into something when you've never seen yourself in that space before. So it's hard to take up space. And a lot of the women who participate in uncovered will say that I never saw another woman who looked like me in the hospital waiting room. I never saw a picture of a woman who looked like me.

So it's very hard to come forward and share your story and build community when there is nothing there. So we're working with nothing and building from the ground up.

Eva Hartling: And that's, it's a tough thing to do, it's ensuring that you have true impact. I want to ask you and maybe we'll start with MJ. What are, who are the women you look up to, and maybe it's organizations led by women as well. Where do you find inspiration and role model when you're thinking of what you're trying and what you are accomplishing with rethink on an ongoing.

MJ DeCoteau: It's been interesting. I should have my phone handy and look at the social justice accounts that I follow on Instagram there's many and it's some really incredible ones. But in terms of like healthcare system change, Dr. Lisa Richardson at women's college hospital has just been an outstanding Example for us.

I follow her on Twitter. We had the opportunity to have a few meetings with her. Dr. Aisha, Lofter's hospital Mungi women's college hospital. I have to give women's college hospital in Toronto, a shout-out and they do have a program that is, is national. And some of the work they're trying to do is national in scope.

I feel like there are really leading the way in terms of thinking about system change and making, the breath like we're developing a partnership with them in some ways, there's the beginning of some collaboration helping and happening and an opportunity to do more in terms of making the breast cancer space a little bit more inclusive.

Equitable for everybody. So those are just two of the women, but my goodness there's so many great things happening out there. And many other people that I want to collaborate with. And I think. We're trying to position ourselves as being an organization. That's really open to collaboration.

And I think that's also part of the shift. I want to have that rethink and go from being best in class, bold boutique, breast cancer, charity to one, that's really collaborating with others. And that's just part of, I think, maturity and shifting as an organization. Of course that

Eva Hartling: and Michelle, who are women who inspire you and maybe thinking, with, and perhaps an education lens, or even intrasectionality generally speaking who are role models to

Michelle Audoin: you? He was a teacher as well. And an immigrant made a beautiful life for himself here in Canada. He put his family first and then.

It's with that. But I carry in my heart as I move forward to, to put my family first and the need to tell my story is also about supporting my family. So that's a huge influence in terms of me shaping my narrative and my story. And just being inspired by, my, my community of educator, friends my, my best friend who has just finished her PhD and is just, continued, to move forward and find her goals in life.

And I'm just inspired by women who, have goals for themselves. It's not as straight narrow path, it's not easy. And they just, continue to pursue.

Eva Hartling: Yeah. And all the women in uncovered are, I think are our role models. They all they have that strength to inspire us and I like how you bring up women who have goals, and those goals can be small. They can be lofty. And that's where we draw strenth. MJ, you brought up women's college hospital and I was going to ask you about.

Kind of that ongoing relationship, with the healthcare sector and given that w e know there are larger issues that need to be addressed. No system is perfect. But certainly I think we've come a long way and that's come up in conversation with both of you. How healthcare providers.

Where considering women going through breast cancer treatment and the shift that's been happening over the past 20 years. So I'm curious to know, what kind of support, and you obviously mentioned a women's college, but what kind of support are you seeing now from from healthcare organizations and what would you like to see more of in the future and perhaps that's part of your strategy moving forward?

MJ DeCoteau: Yeah, rethink really sees, we play an interesting role, everything, breast cancer, we have the close connection to the community to the women in our community who, are looking to us for support, sharing their experience. That's who we listen to for gaps in care. And then we also have relationships

with a lot of medical oncologists and oncology nurses. And so we are that opportunity to try to build some of the bridges. Because I think the way our healthcare system works now is oncologists. I know many of them they're really quite overloaded in terms of the complexity of the new breast cancer treatments and everything that Has to be considered and shared and understood by those that are in front of them.

So we definitely see an opportunity to try to have some conversations outside of that. One-on-one dynamic between, patient who's being treated and their oncologist. So Rethink's working to, we've been able to get get representation on. Conferences and, putting that kind of brain, that patient voice and the patient values to places where oncologists are, where they can hear it more broadly, because sometimes, the one-on-one dynamic is important.

Sometimes it takes that opportunity to hear things from a little bit less of a personal exchange. See and hear and understand. So that's something that's really important to us is to bring, people from our community forward onto panels at conferences, we just had three women open the Canadian breast cancer symposium.

Earlier this year, three women from our community got to speak in front of 300, medical oncologist. It was on zoom. But to each share their. Their story and their perspective to open a conference that was going to be really focused on the numbers and the data and clinical trial results and conversations around the complexity of treatment.

So we're trying to humanize those conversations and make some change that way and educate the healthcare system.

Eva Hartling: And I like how you bring that up, because I think that's been a way that your organization has made a difference. It's in my conversation with Michelle, we were talking about there's obviously the medical aspect of treating the physical, but there's everything around it that has to do with emotional, psychological, and you bring that to the conversation.

I want to shift to talking a little bit about metastatic breast cancer, specifically, Michelle, you are someone living with metastatic breast cancer yourself. And I know that this is something rethink has been paying attention to. As you brought up, it used to be known for, affecting older women.

We see that it's affecting young women as well, and you've worked on several initiatives to really bring more resources, make more resources available. So I'd love to hear about what's being worked on. And how is this becoming an area of focus for rethink moving forward?

MJ DeCoteau: I am so happy to talk about metastatic breast cancer.

It's the reason I started rethink is my mom died of metastatic breast cancer and. When I think of what I was saying about shifting from being marketing savvy or putting out, bold statements about the cause. One of the things that I think has happened in the breast cancer space, and there's a lot of people talking about pinkwashing and we live in this 24 hour media news cycle and people have short attention spans.

Breast cancer is such a complex disease from both the perspective of how to treat. There's not just one type of breast cancer. There's not just going to be a cure. There are, many different forms of breast cancer. People bring their own biology to each breast cancer experience that we need.

We have seen the development of really important targeted therapies that target very specific forms of breast cancer. And we've also unfortunately seen an oversimplification out there of people thinking. Oh, just, get your mammograms and breast cancers taken care of, or there's an assumption that there is a lot of support for breast cancer or there's been all this money for research.

So isn't that kind of, taken care of and what we've really done, from the moment we started creating a community for young women with breast cancer, we did start to work very closely with young metastatic breast cancer patients because young women have the type of breast cancer typically.

More aggressive. So a lot of our community as we're building this community, we started to experience a lot of loss in the community and something had to be done. It actually was our first, I think, real moment of, okay, we've got young women on the breast cancer agenda. We've got raised a lot of awareness that young women get breast cancer too.

We're supporting their needs. But there's this glaring gap in the next big gap that we need to address is no one's talking about metastatic breast cancer. And so we, created, did research. We brought a panel of young metastatic breast cancer patients together. We listened to them and ask, how can we help?

What are your needs? We made a documentary, we created a whole set of digital tools. But there's also been a need for system change in our healthcare system. And so we, did a lot of research on what could be done to improve access to treatments. And, it's a tricky balance between wanting to create urgency for our metastatic community and make sure people are understanding that there are.

Issues like access to treatment issues here in Canada. And at the same time, not overly scaring, the average young woman who is actually at a very low risk for getting breast cancer to begin with. So it's always been our tricky balance that we have to do is create urgency, but at the same time make sure young women aren't, going around.

Terrified that they're going to develop breast cancer and metastatic breast cancer. So it's something that, that was our first realization that it has to be more complex conversations. That's why we do panel discussions. That's why we tell stories on our Instagram. That's why we create content that's helping to unpack from different perspectives.

Some of the more nuanced things that happen within the breast cancer space. And then, sometimes there's an opportunity where it can all come together and it can be a powerful, bold soundbitey clip, make NBC count or NBC time. Those are just some of the names of some of the campaigns we've had.

But behind that is a lot of. Complexity, a lot of challenges, a lot of needs that we're trying to address. And a lot of listening. That's what it's all about.

Eva Hartling: Michelle, anything you want to add and given that you're experiencing obviously firsthand what navigating through that world. It's like, curious to know how you see everything's positioning on that matter

Michelle Audoin: cancer.

And it's not because it's a happy subject. It's just because it's an opportunity to educate. People in general about metastatic breast cancer. And one of the things that a lot of people really don't know is that there is no cure for metastatic breast cancer. It's the breast cancer that has left your breast and taken hold in another part of your body, your bones, your brain, your organs, your lungs, and it's treatable, but there is no cure.

We talk about needing to find a cure for breast cancer while we need a cure for the Mets. And as MJ pointed out, there's so many different kinds of breast cancer. So it becomes a very complicated issue. But one of the key points for me in going through my diagnosis and being like living with metastatic breast cancer is the quality of.

And that's a big thing for young women living with metastatic breast cancer. You're going to be on treatment for life. And when treatment stops working, it goes into the next treatment, which is typically comes with more side effects and it's more invasive so that the treatments get heavier and heavier as we go along.

And so we all know that and it's about having a good quality of life. Right investments funny from funding research into treatments that provide us with a longevity and with a great quality of life. And so that's why I find it really important to talk about metastatic breast cancer.

People will look at me on the street and they will say, oh my gosh, he looks so good. You're done with treatment. And I'm glad that people, their first reaction is I look at. That's a sign that some of the investments in research have been working, that I could be on a treatment that at this point in time, I'm not losing my hair, that I can have a good meal with my family.

And then I have some energy to play with my kids, but I know when this treatment doesn't work, the next one is going to be harder to tolerate. So I'm always keen to educate people that face of metastatic breast cancer continually changes depending on the treatment that you're on, but we do need to have more investments to make sure that young women have a quality of life.

MJ DeCoteau: And I can just chime in to build on what Michelle said about quality of life and the need for education. One of the things we are working on is trying to help empower those with metastatic breast cancer, especially to participate in our treatment planning and feel empowered to bring their own voice and values to conversations as Maybe there's been a progression and have to make a decision around, the next treatment and what that means and how that might affect quality of life and quantity of life.

And it's so important that someone who's going through it themselves. Somewhat at a loving level playing field with their oncology team. And it can be anything from just understanding some of the basic terminology about metastatic breast cancer. What does disease stability mean?

To some of the more. Technical things like, oh, this treatment has been shown to give a progression-free survival or overall survival. What does that mean? Exactly. What's pathological complete response. So what Rethink is doing is collaborating with the community to try to bridge just that that health literacy gap but at the same time, I think the more supported you feel and the more you feel a part of a community, the more you're going to feel comfortable bringing your own values to your own conversation with your healthcare team.

So part of it is simply helping those with metastatic breast cancer feel seen, heard, understood, because I think it increases their confidence to the. Bring what they're thinking truly forward. Cause we do hear from some of the community, like you want to be the good patient you want to you maybe don't want to talk about this treatment might not be working because you want to stay on it.

So it's very challenging and we're here to try to help our community with those.

Eva Hartling: Michelle, you brought up, misconceptions or maybe just lack of knowledge around MBC and I think around breast cancer in general this leads me to want to ask you and maybe starting with MJ, what's one thing you wish people would know about breast cancer.

What's one thing that you feel is a fact that it has not been talked about.

MJ DeCoteau: The one thing I would want to share is that, breast cancer is not just one disease.

Sorry, I'm trying to think. There's just so many things to say.

Eva Hartling: I was like, that's a great statement on its own. There might be a follow-up

MJ DeCoteau: Michelle, what would

Michelle Audoin: you add?

Eva Hartling: Yeah, Michelle what do you wish people would know about breast cancer?

Michelle Audoin: I'm always motivated and inspired by it and that, So many faces of breast cancer.

And so I think we just need to continue to hear those stories and see that breast cancer is not a heterogeneous homogeneous disease that it affects women, across race and across.

Eva Hartling: Of course.

MJ DeCoteau: I think there's a lot of I see similarities between some of the learnings from, navigating COVID as a society, you would see things like we're all in this together. And then, someone would clarify we're not all in the same boat. And so that's. The same thing we're seeing in, breast cancer treatment, everyone's got their own unique experience.

There are systemic barriers that are affecting people's experience breast cancer in and of itself. I led biological level is very complex. It's not one thing. So you mix all those unique experiences together. And our, our great work that we have ahead of us is how to figure out, there's not a one size fits all solution.

There. We need many solutions and, resources are definitely stretched in our healthcare system more than ever. How can we create, smart solutions that are going to really. Drive impact, especially from a health equity perspective. that? Sorry. That's our focus.

Eva Hartling: Mg and Michelle, I just want to thank you so much for taking the time to speak with me today. Michelle obviously wishing you ongoing sending positive vibes for the continuation of your treatment and to the two of you.

Thank you for what you're doing for. Women everywhere and anybody who is affected by breast cancer in their lives, whether it's somebody going through cancer or somebody who has a close one going through cancer and will keep up with all the things that rethink is up to a we'll link up to your social media and your website.

And of course wishing you a great October. And there's so many conversations happening around this issue right now. And it's more than more important than ever I believe. And thank you.

Eva Hartling: I really hope you enjoy today's conversation.

And if you did, as always, don't forget to subscribe, rate, and give us a review wherever that is possible. Thank you to TD bank group women entrepreneurs, further support of The Brand is Female. You've got it in you to succeed. Let TD help guide you. Visit The Brand is Female dot com slash podcast and click on the TD logo.

Thank you for listening. I'll be back in a week with a new guest. Thank you so much for listening to a podcast by The Brand is Female I'm Eva Hartling. And this episode was produced by our team sound engineering by Isabel Morris, research and production support, Claire Miglionico marketing and digital growth, Kayla, Gillis and partnerships, Natalie hope.