Voices of Leadership: Insights and Inspirations from Women Leaders

AskEllyn: Breast Cancer, Advocacy, Innovation and Conversational Health Care with Ellyn Winters-Robinson

• Bespoke Productions • Season 1 • Episode 26

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On today's episode, you'll hear a story of resilience, transformation, and groundbreaking change in women's health. Our guest, Ellyn Winters-Robinson, is a breast cancer survivor, entrepreneur, best-selling author, and an advocate for women's health.

Before the book and advocacy, she was a woman diagnosed with breast cancer. Who felt alone and angry. Ellyn took her anger and turned it into advocacy. Then, she took her advocacy and turned it into action.

Ellyn's book, Flat Please, Hold The Shame, is a girlfriend's companion guide for those on the breast cancer journey. It offers candid stories, comfort, humour, and hard-earned wisdom.

Ellyn's advocacy continues beyond the written word. She also co-created AskEllyn.ai, the world's first conversational AI tool designed specifically to support people on their breast cancer journey. This groundbreaking digital companion brings empathy and support to patients and their families, revolutionizing the way support is offered during a challenging time.

Join us for an inspiring conversation as Ellyn shares her story, her work, and her vision for a world where no one faces breast cancer alone.

Resources
Ellyn's Website
Visit AskEllyn
Read Flat Please, Hold the Shame
Connect with Ellyn on Instagram

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Ellyn:

Today's episode is brought to you by AskEllenai. If you have been diagnosed with breast cancer or supporting someone touched by this disease, ask Ellen is here to help. She's private, free, always supportive and speaks every language. Chat with her today at AskEllenai slash chat. Welcome to Voices of Leadership, the podcast that shines a spotlight on the remarkable women of the International Women's Forum. I'm your host, amy, and I'm inviting you on a journey through the minds of trailblazers. On today's episode, you'll hear a story of resilience, transformation and groundbreaking change in women's health.

Ellyn:

Our guest is Ellen Winters Robinson, breast cancer survivor entrepreneur, best-selling author and an advocate for women's health. But before the book and the advocacy, she was a woman diagnosed with breast cancer who felt alone and angry. Ellen took her anger and turned it into advocacy. Then she took her advocacy and turned it into action. We'll talk about her personal journey, her best-selling book and how Ask Ellen came to be.

Ellyn:

Ellen's book Flat Please and Hold the Shame is the girlfriend's companion guide for those on the breast cancer journey. It offers candid stories, comfort, humor and hard-earned wisdom. But Ellen's advocacy doesn't stop with the written word. She is also the co-creator of AskEllenai, the world's first conversational AI tool specifically designed to support people on the breast cancer journey With empathy and expertise. This digital companion is transforming how we can support patients and their families. Join us as we explore Ellen's personal journey in the innovative ways she's reshaping breast cancer care. Hi, ellen, welcome to Voices of Leadership. I have been looking forward to having you on for a while now. Oh, thank you, amy. I to Voices of Leadership. I have been looking forward to having you on for a while now.

Amy:

Oh thank you, Amy.

Ellyn:

I'm happy to be here. So we met last year when you were a guest on this is Perimenopause, another podcast that I produce, and from there we discovered we have so many mutual connections. And then you joined IWF, so we get to hang out a lot now.

Amy:

Yeah, best investment I swear I've made I've met the most amazing women through.

Ellyn:

IWF. It's been great. It is pretty incredible. So can you tell us a little bit about who introduced you to IWF and what your experience has been like so far? Yeah, so it was.

Amy:

Sherry Vanstone, who recruited me in to the Waterloo group and I joined, I guess just coming up on a year, and yeah, it's just, I've been blown away by the caliber of women. It's just been, as I say, it's been just the best investment I could have made in myself professionally and just to make those connections and just they're just yeah, I mean not not just, you know, professionally accomplished, but just really nice people.

Ellyn:

So it's been, it's been really great, yeah I enjoy the like-minded people discussions, so you don't have to explain a lot. You can just say this is what's happening, good or bad, and yep, it's nice to just be able to talk about it yeah, women supporting women, right.

Amy:

So we don't, we don't have nearly enough of that.

Ellyn:

No, we're working on it. One dine around at a time, right, yeah? So I would like to talk about Ask Ellen and I want to know where she's at today. But before we get there, can you tell us a little bit about Ask Ellen and how you are creating a new space within healthcare called conversational healthcare?

Amy:

Yeah, so it really goes. It goes back two and a half years ago. So I was diagnosed with breast cancer in March of 2022. Ended up having a double mastectomy and chemotherapy and radiation, and it was really my first sort of tour of duty through the healthcare system other than just having a couple of babies. I really had never, you know, spent any time in a hospital and I started to realize that some of the best information and wisdom I was getting was from other women and survivors, like the care was great, but it's sort of it's very focused on the medical attention that you need and when you're going through a breast cancer diagnosis, I mean it is trauma of the highest order.

Amy:

I'm still, you know, reconciling that to this day and it really it challenges everything you think about. You know what you thought and prized as your femininity right, and there's just not a lot of support for that. And there's all these like steps along the way that you know women that have gone through it are like sort of pull you aside and say, hey, you should do this or you know this is going to happen, and it was just really helpful. So where things all started was, long story short. I started to write a book. I wrote a book called Flat Please which is out on Amazon. It's hit bestseller status. People seem to like it that I haven't paid and, and the idea was really to just parcel up my experience and take somebody through that journey like I'm holding their hand.

Amy:

And then, because I work in tech and I've spent three years working in tech I ended up having a collision, which is sort of a bumping up against another startup founder who actually took and adapted my book and created Ask Ellen from it, which is the world's first AI companion for those on the breast cancer journey. She's non-medical, she's completely private. We don't know who's interacting with her at any point in time. She will always be free. That's my commitment. Is that? You know? It sounds very icky to think, you know, for $9.99, you get to talk to my AI and she speaks every language, and we launched her a year ago, or just almost a year ago now. So she's out there.

Ellyn:

Yes, I remember you talking about just about to launch Ask Ellen and it was, it still is revolutionary, but such a revolutionary idea to be able to ask questions privately in a conversational manner, without medical jargon. I just was so excited to see where it was going to go. So it's been a year and where is Ask Ellen today?

Amy:

Yeah, so since that time I've also built out a blog around her. You know, part of it is just to make sure that there's traffic coming to the website, that people find her, but also I'm discovering that there's really a bit of a blank space around. It's really, I think, the first breast cancer lifestyle blog that's out there. There's a lot of medical information, but I always say, a breast cancer diagnosis really etches itself on your soul and people. Really it becomes part of your narrative, and so I have women stepping forward and wanting to share their stories as well. So, yeah, so the blog's now sort of adding a bunch of stories on top of the AI and we've had gosh. It varies from day to day, but we've had well over 15,000 interactions since we launched her, which would be questions that are answered.

Amy:

You know, I can see that people are accessing from like 10, 11 different countries around the world and so, yeah, she's out there. As I say, you know it's interesting. I got an email a couple weeks ago from a nurse in Tasmania who said she had heard about Ask Ellen at a nursing oncology conference and that she wanted to incorporate Ask Ellen as part of a patient portal that she's building out for the Royal Hobart Hospital, so it's really interesting. Again, I don't know who's out there using her and then every now and then, something pops up like this and you're just like, wow, that's kind of cool. She's over in Tasmania right now.

Amy:

So, and I have, you know, support from homagic. Ge healthcare is really excited about what we're doing and you know and I'm in conversations with some other pharmaceuticals looking to you know, it's all harder than you think, you know, trying to get people to pay attention to you and and really you and really get what we're doing, but there's a lot of people that are very excited about what we've built, and so I just keep the faith and keep my head down and keep pushing forward.

Ellyn:

That's so exciting though that it's cropping up. It's always nice when someone says I heard about this and I need more information.

Amy:

So congratulations, that's awesome.

Ellyn:

Thank you. Yeah, Now can you tell us maybe a few specific examples of how people might engage with Ask Ellen from either patient or family perspective, absolutely, so she's able to perspective shift.

Amy:

So she's not just there for the person that's been diagnosed. So that's you know. Obviously, the primary thing here is it's very lonely when you're first diagnosed. You feel absolutely like you're the only person in the world that's going through this and you're shattered. You're emotionally shattered. I remember after I was diagnosed, in the four weeks between the diagnosis and getting my biopsy, I literally lost 10 pounds just from stress and trauma.

Amy:

And so she's really there as that confidant. You know it's two o'clock in the morning when your mind is racing. She's there and she'll answer anything. That literally she can talk about anything. So you can confide in her, you can ask her questions and she'll always respond with lived experience. So that sort of knowingness that comes with someone who's gone through this journey it's like talking to a really good friend and she's always gracious and very kind and supportive. So she's not scary.

Amy:

Because one of the things we discovered or I discovered was you know you go for support, especially in those early days of diagnosis, and you join Facebook groups, for example, and there's like collective trauma. Everybody's in there, everybody is terrified and it's really. It's overwhelming and I had to actually retreat from those kinds of groups because it just was too much. So, because she can perspective shift. She's also there to support friends and family members, so you can go to her and you can say how can I support my wife or what should I curate for a gift basket? That's actually a question that somebody has asked her, probably one of the most poignant things. Again, unless somebody's raising their hand, we don't know who's using her.

Amy:

But I had a woman reach out to say that she had used Ask Ellen as a support when she was in the bathroom and she was taking her bandages off and seeing her scars for the first time after her mastectomy.

Amy:

And she said she was really anxious and learned that we had a lot in common and the thought that I was able to sort of digitally stand with her at a time when you know a very vulnerable time and that's not something that a doctor or a nurse is ever going to do for you, and even family members may not be there and present for that sort of thing so that really moved me to know that she was being used in that way.

Amy:

The other cool thing about her is that the way they designed her she can appreciate and understand not just the language you're speaking but the level of mastery of a language. And so if you want to talk really sciency to her, which Dr Gipp from GE Healthcare has done she'll talk very sciency back. But if you talk in a very simplistic phrasing, similar to what a child like why is mommy bald she'll actually then sense that and adopt language. So she responds like a mother would to a question from a child, and again, it's not that a child's going to be asking her questions, but a parent might have to deal with those questions from a child, and so it's really quite remarkable in terms of how they built her that way.

Ellyn:

She's very supportive and also facilitating conversation, because sometimes those conversations are hard to start. Any sort of medical diagnosis that induces trauma and there are many we forget about the mental part of it and the family sometimes.

Amy:

Yeah, and there's really not a lot of supports for family members. I'm really excited. I've recently partnered with a researcher at Brock University and we have submitted a grant proposal to the Canadian Cancer Society. I've got my fingers and toes and eyes and everything that I can cross is crossed, that we are successful. But it's for a clinical research study looking at Askellen as a support for not just patients but also family members, and she's confirmed that there's really not a lot out there. That is, you know, modern and new age. Everything is all in PDF form. So you know, great, you're diagnosed and now they give you all these like paperwork that you have to read right.

Ellyn:

Because you want to read. That's exactly what you want to do.

Amy:

Exactly so. Yeah, so I'm hopeful.

Ellyn:

Well, you are not only an author and creator of Ask Ellen, but you are also an advocate in general in the breast cancer space. So in the years since you launched Ask Ellen, what has changed in the breast cancer landscape?

Amy:

So one really big change that women in Ontario need to know about is that, as of October the 8th and I can't claim any credit for this, this is actually all the work of Dense Breast Canada. Jenny Holmes tirelessly fought for this but as of October 8th, screening age is now going to be moving from 50 to 40 in the province of Ontario, so more women will be able to access routine mammogram screening. We are seeing that breast cancer is showing up younger and younger, and the other thing is that you won't need a doctor's referral so you'll just be able to call and book an appointment. So that is a big shift, and that is happening south of the border as well. So the FDA have recently announced a move to 40 as well across the US.

Amy:

I did not have dense breasts, but 50% of women do, and so now women are being told of their breast density. It's indicated on their mammogram, so reports. So that is also encouraging. It's just we want to make sure women know what to do with that information, because if you do have very dense breasts, you really do need to have supplemental screening. So those are a couple of shifts that are happening. There's some really exciting stuff, you know, on the topic of AI, ai is now, you know, being explored as an image enhancement, so I think there's huge potential for AI to give radiologists superpowers to spot cancers sooner, not just breast cancer, but all kinds of cancers. So I think there's some really exciting things that are happening in terms of technology. You know, I think there's still a lot of work to be done.

Ellyn:

But that's such great news about the shift in age from 50 to 40. It really is. It takes away barriers and limits and the self-referral. I would think that that's going to take people a long time to get used to. We're so not used to being able to self-advocate and referral. How does that work? A self-referral?

Amy:

You just there's a. So the breast screening, if you go to. Well, this is Ontario, right? Yes, it's the. It's the breast screening website and there's a list of centers that do. And you're I mean to absorb this demand. It's going to be interesting. I mean, I think they're counting on women not showing up, because there's something like 10 million women between the ages of like 40 and 50 in Ontario. If we all show up for screening, the wait times are going to be crazy. But you're starting to see and this is where privatization is coming in you're starting to see private clinics that are popping up as well, and hospitals are opening up spaces, even without having budgets, but they're just recognizing that there is going to be an increase in demand.

Ellyn:

So it's good. Well, we'll include all the links in the show notes for all of that information, because it is a self-education piece that needs to be talked about, I think.

Amy:

Yep, yep. And then the other thing that's happening this month is I'm back collaborating with Dense Breast Canada and with Hilary Gold, our award-winning photographer. Again last year we did, I Want you to Know, which portrayed 31 individuals on the breast cancer journey very diverse depiction. This year we've focused on young women, so we have a campaign that will start launching tomorrow, called not too young, and it's women between the ages of 27 and 39, because, again, the incidence of breast cancer is is increasing in women, like dramatically increasing between the ages of, in the ages of 20 to 30. So and they're not accessed, they can't access screening.

Ellyn:

Well, the photo series was so powerful last year and I'm glad you're doing it again and bringing light to a different part of breast cancer and another piece of it that people need to know about.

Amy:

Yeah, there's a lot of young women face a tremendous burden because I don't think people really appreciate if you're 20 and diagnosed your, or 29 and diagnosed you're immediately put into menopause. You know you have to make decisions around your fertility, you have to harvest your eggs. You, you know, may lose that ability and you're at your peak, earning years and dating years. And it's a lot for these women and they're on medications that basically turn them into old ladies like me and it's just not fair.

Ellyn:

No, it's not Not at all. You did reference there's still lots of work to be done, and I know that this is a big question and that we could do an entire series on it, I would think. But can you give us a couple of areas of breast cancer research or care that still require further attention?

Amy:

I think it's really around that emotional, the emotional supports. I think that's really, and I get that the system is really burdened and it's partly why we created Ask Ellen, because there is this gaping hole. As far as I'm concerned, I just don't think that there's full appreciation in the medical system, but also just in society, about the trauma that it causes and the you know physical harm, the long term effects. You know, I know women who are getting blood clots, who you know, their you know their heart is affected, their you know bone density is affected. There's just so many things. It's like the gift that keeps on giving.

Amy:

You don't really ever get over cancer, like it's just, you know, and then you've kind of always got in the back of your mind what if it comes back? Right? That's just something I think anybody that's a cancer survivor goes through. So I think that emotional, in a perfect world, when you're diagnosed, you'll be given some kind of a counselor and I think you can access some of that stuff. But you really have to ask for it and not every healthcare system has those kinds of supports. So I think there's a lot of work to be done there.

Amy:

And then I just think also and this is probably what got me started doing all of this advocacy work is just this notion of, you know, women that have a mastectomy or somehow, like these old ladies that should be, just like you know, reconciled to the dustbin to go sit in a corner somewhere with a false prosthesis on. And I remember Googling fashion after mastectomy and it was like let's wrap scarves around our necks and hide, and that's just. That makes me so sad to think that women still kind of shame and blame themselves and that society shames and blames them Like we did something wrong, and that just makes me mad.

Ellyn:

It should. It's maddening and sadly, breast cancer isn't the only instance where women are encouraged to hide or shrink or not be seen, so it's pervasive, unfortunately.

Amy:

Yeah, and I've learned that it's even more profound in some traditional cultures where any kind of sort of female disease diagnosis is really, you know, it's not talked about. It's not talked about even in the immediate family, and so that breaks my heart too, to think that women have to go through this alone.

Ellyn:

It is very, very sad, and you talk about talking about it, and you sure have talked about it because, you mentioned earlier, you are the author of Flat Please and Hold the Shame, and it is a bestselling book and it is about your breast cancer journey. However, you also talk about your choice to remain flat, which was something I had not heard of until I had met you. So I'm curious what influenced your choice to remain flat, which was something I had not heard of until I had met you? So I'm curious what influenced your decision to remain flat and why is it an option that is that not everyone is aware of?

Amy:

Yeah, and I certainly wasn't. I mean, I think I mean in the past, you know, many decades ago, it was the only option, right? Yes, I didn't think about that, you're right, yeah, but you know they've come a long way in terms of reconstructive surgery, you know, with implants and they can do some really remarkable things, like a DEP flap, which is where they take tissue and transfer tissue from one part of the body to the other. But they're big surgeries, like I think that's. The other thing is like this is not a boob job, right? This is not an easy thing, especially when you're going through treatments as well. So radiation makes the skin very brittle and that sort of thing.

Amy:

So I didn't know about aesthetic flat closure. It was actually again a conversation I had with a friend who had cancer 12 years ago and had implants and she's the one who introduced me to the term. I'd never even heard of it and she was at a point where her implants so the implants have to be replaced. They, they have a, they have a sell by date, which I don't think people know, and hers were starting to kind of wither, um, and they get not pretty when they do that, and and she's also had the leak into her skin or her tissue around her breasts. So she said she was thinking about when it comes time to replace them, about going flat. So that's where the conversation started. And then I started Googling it and then I realized there were all these like flatties we call ourselves out there and they seem to be kind of a joyous bunch. They like to, you know, wander around in the you know, the forest and the beaches without their tops on, and, um, and I was like what is this? Is this some strange, weird feminist movement thing? And but then it kind of got piqued.

Amy:

My curiosity and I really part of the motivation for going flat was just, I just didn't want to sign on for more surgeries. I didn't. I spent two years in lockdown. I just wanted to get on with my life and even if I had the opportunity to reconstruct it just wasn't available to me I probably would have gone much smaller anyways in terms of my size. So I was like, well, you know, I think that you know, I'm just going to make the choice to stay flat and my surgeon was good about it and he did an extraordinary job.

Amy:

So I am, you know, perfectly flat and I just I don't hide it. I go around, you know, wander around with tank tops on and in fact it's kind of freeing. I mean I can wear backless dresses and spaghetti straps and and all those things, and I mean I just I don't want to push any option on a woman, I just want women to know that this is an option and it is a simpler. I mean no surgery simple, but it is a simpler more one and done type surgery versus three to four reconstructive surgeries, like if you're going through implants and a DEP flap surgery is a 15 hour microsurgery, it's it's. It's a big, big surgery, yeah.

Ellyn:

Wow, yeah, that's a lot. That's a lot on the body If you're healthy, let alone if you're not. Yeah, exactly Now, you said you had a good experience with your doctor, which I'm very happy to hear. I know that's not always the case. If the doctor's unfamiliar or not supportive of that, how would you talk to him about the flat option?

Amy:

Yeah, and it is a thing. So, you know, there's stats that say that you know women that go flat and that certainly is a game supported by the communities I belong to. So women that go flat are, you know, 75% are very content with their decision. There's something kind of freeing about it in some ways. But in 25% of the cases there's something called flat denial, which is where the surgeons are not supportive of women and I hear these stories all the time. They will push back, especially if it's a young woman. They'll say look, you're going to regret this. They'll talk about a loss of femininity because you don't have breasts. There are extreme cases where the surgeon will actually overrule the woman while she's asleep on the table and leave excess skin. And I've seen many, many photos like I have a beautiful job, my chest is completely, perfectly flat, but there are many, many women who are just sort of left, really hollowed out, and there's like excess skin left, and I think that's that's just absolutely, absolutely horrible.

Amy:

I've also heard stories of women who go and start talking about aesthetic flat closure and then they'll, you know, defer to their husband and say, well, how does your husband feel about it? I'm like sorry, don't get about or or they'll, or they'll require the woman to go see a psychologist before they'll perform the surgery. So just all of that is so patriarchal, misogynistic. And some of these are female surgeons. To me it's just so insulting that we're not able to make our own decisions. So it is a thing there's organizations out there that are really battling that and that are really helping. Aesthetic flat closure is actually a fairly new technique for surgeons, and so there's also a lot of learning to be done in terms of, you know, surgical documentation and that sort of thing. But for all the not so good surgeons, there are some that are very, very supportive.

Ellyn:

Well, I mean for you to write the book and share your story publicly took a lot, I'm sure, emotionally, and I think that we should all be thankful you did it, because you call out the option that maybe some people don't know about.

Amy:

Yeah, and the book isn't you know all about. It's just part of my story, the decision to stay flat. I mean the book's title is maybe a little misleading because it's really just about that breast cancer journey, but so anybody can read it. You don't have to be contemplating going flat.

Ellyn:

So you know, it's your journey and that includes that, which is the option, and I think I'd like to just pause for one second because it is October 2024. You were diagnosed March of 2022.

Amy:

Yep, so I'm just hitting all my two year anniversaries.

Ellyn:

In that two and a half year timeframe, though, you went through a breast cancer journey, you wrote a book, and you have launched Ask Ellen, so it is an incredible accomplishment as an entrepreneur and a person to be able to do all of those things while going through what you went through.

Amy:

Yeah, and still running my own business.

Ellyn:

Yes and yes. You have your established business on the side. I forget all the things you do and you're a mentor at the Accelerator Center. I mean you're incredible and you just kept going through it and so good for you. That's unbelievable.

Amy:

I just you know, I always said to myself when I was diagnosed there's no way out of it but through it, and that's just kind of you just do put your head down and kind of that's just my way of dealing with things. Is there's another line called action trumps fear. Yes, that's true, because it is. It is a lot In the thick of it. You don't realize how much it is. It's. I'm still processing stuff, yeah.

Ellyn:

I'm sure it takes a long time. Absolutely it takes a long time. When diagnosed with something unexpected, I can relate to that. Absolutely, it takes a long time.

Amy:

When diagnosed with something unexpected, I can relate to that, yeah, yeah, even just physically to for the body, cause you know, with the chemotherapy and everything else, the it, they say it takes about four years for your body to kind of bounce back. So still in the process, and I've now got curly hair.

Ellyn:

You do and it's lovely. So through that you're now. Well, you were an entrepreneur before. Now you're like a super entrepreneur, and you're now an entrepreneur in the healthcare space. So what do you think? Women's healthcare is often understudied and underfunded, so what is the state of women's leadership in the healthcare space?

Amy:

I mean certainly there's some really exciting women and founders and ventures in the femtech space. Not enough of them. I think it's still a little bit of a sad statement that the first and only unicorn in femtech, which is Flow the Flow app, which a lot of women use for managing and monitoring the periods is actually male-founded and apparently there's some concerns around what they're doing with data privacy. So I think there's glimmers of hope and movement.

Amy:

Any kind of innovation in healthcare is really hard. It is obviously, and for right reasons, a very risk-averse part of the system. It's not incentivized. That's not what they're there for. They're not there to innovate, and so it's been. It's challenging to get any kind of new technology adopted and used with patients, even though mine is completely non-medical and I think that was a very smart move on the part of the team that built her. They you know they're the one who guided me and said let's make her complete medical so we don't run afoul of doctors and clinicians actually love her. But you know, getting their attention and getting even a patient's attention when you have like zero marketing dollars, you know we're just scratching the surface in terms of how we can help people Right.

Ellyn:

And when I mentioned underfunded, can you talk a little bit about how women's health care is understudied and why that impacts us?

Amy:

Oh yeah, like there was. There was something that just came out the other not that long ago, a couple of months ago in the United States, like under the Biden administration, there has been funding for women's health. I think it was like 100 million dollars has been set aside for it, but they equated it to a tech startup in the customer relationship management system or sales systems that also raised $100 million. So it's just, you know it's a drop in the bucket in terms of what needs to happen.

Amy:

You know we're privileged in North America to have access to some pretty good health care, but if you start looking worldwide, there's figures that say, like only 11% of women are talk back to screening. Only 11% of women are screened for any type of cancer. So when you start looking at the global dilemma and you know the state of women's health on a global scale, it's really quite depressing. You know women are dying of cancer. That is completely preventable. It's even shocking to me that you know pharmaceuticals only began admitting women for drug trials as of 1993. And so most of the drugs that we're taking today were only ever tested on men.

Ellyn:

And that's a huge thing, because everybody, the physiology, is different. Before you get into anything else, well, it's good to call out what it is and I like to talk to experts that have some numbers and information, like you do that it is something that funding would probably change our access and our ability to prevent death.

Amy:

I guess in that sense, yeah, well it's, you know there's government funding, then there's, you know, again, sort of the funding, for I mean, I'm a nonprofit so I'm not sort of eligible for the same kind of capital raise that other companies are. But you know, getting investment attention from what is still very much a bro network of VCs is challenging for female founders. So it's an ongoing battle.

Ellyn:

So I'd like to talk a little bit about what inspired you to do this, and we talked about your journey and those kinds of things. But you mentioned you had a very successful career in marketing prior to your diagnosis, and you still do. And then you made this career pivot, based on your lived experience and your advocacy. And many women have ideas to create change or disrupt the market based on their lived experiences, but they're hesitant. So what advice would you give them to take that first step?

Amy:

Well, again, I think it's sort of motivated. I mean, I just got so mad that I felt like I needed to do something to, and again it was really driven by this need to eliminate the shame and blame that exists out there and just live authentically. And you know it's not easy to juggle all of these things. You know it's hard to find funding to support my initiative. It's hard to get the attention of, you know, the big companies out there, but then you get, you know, messages from women thanking you for what you're doing, and and so it's makes it all worthwhile.

Amy:

It's funny because I'm taking a spoonful of my own mentor medicine. I mean I'll say to a startup look, this is all going to take much longer and be much harder than you ever could have imagined it would be. And we kind of almost smile to ourselves or smile behind our hand when a startup comes in and says, oh, you know, we'll be in market in six months. And we're like you know, and I'm now I'm getting a spoonful of my own medicine. It's there's troughs of despair and then there's a little. It's like a roller coaster. You go and then you go oh dear, now I'm in a trough and then you go, you go back up again. So that's really the only advice is is if you really truly believe in it, if you really truly are personally committed, then it's it's worth it. I know I'm just scratching the surface, but I know I'm helping.

Ellyn:

And is that? What kind of? Is that belief in yourself and the cause, sort of what took you from mad to action? Because it's a big step?

Amy:

Yeah, yeah, and again, I think that's the only way I know how to roll is is I just? I just put my head down and start doing things and I'm really good, I guess, at multitasking. I'm trying to juggle it all Because, yeah, I mean, we still have to, you know, pay for groceries and do those sorts of things as well. So, but, yeah, you know, you meet with I'm. You know, I met with a recent this summer I met with a pharmaceutical and within an hour they're like we, we do a whole lot of patient experience, research, and what you have built is what people are crying out, asking for.

Amy:

So, that was very validating, and some really smart people around me keep saying keep going, this is really brilliant. So what you've done is really cool. So I figure if I just keep shouting, people will at some point. It's just really. I mean, I think anything AI is still very, very new as well and, you know, a little weird for people. So you know, I know we're on the sort of front end of the of the wave as well.

Ellyn:

Is there a trust factor with AI? Do you think from people?

Amy:

Yeah, I think there is, I mean absolutely. I mean, you know, I certainly have been down the road with you know, with some of these larger organizations, you know, and I actually feel really great because you know, ge Healthcare actually went live with Ask Ellen as a third participant in a webinar, so I know that they had to go through a whole bunch of compliance so and she stood up, so that really gave me a lot of confidence. But the other thing that's kind of cool is if you go to ask Ellen you say is Ellen real? They'll say she'll say oh, yeah, she's. You know she's over here and she'll often point people to my Instagram account, and so I think there's a little bit of a confidence factor in that there is a real version of me as well as this digital version of me, and I think that gives people some comfort, at least at this stage anyways.

Ellyn:

Now, today or maybe in the future, is Ask Ellen able to transition to other?

Amy:

diseases. So we're already starting to see that happen. Of course, I, you know, I work in partnership with Gambit Technologies, the company that actually built Ask Ellen. They are now starting to build out other solutions. So we actually just heard that there's going to be a similar type technology for Parkinson's disease, which was something that I really back a year ago when we were kind of conceptualizing this. I remember saying, wouldn't that be cool? And so that's going to happen. There they're working with a very young lady she's in just grade 11, on a solution for eating disorders and so yeah, so we've had lots of interest in colorectal cancer. You've talked about transplants. So, like that would be, my dream would be this entire category, as I say, called conversational care, where every diagnosis would have some this, this ai component of a, a patient with lived experience that's there to handle all those what do I do now? Kind of questions that are non-medical in nature. So I'm really excited that those solutions are starting to bubble up to the surface.

Ellyn:

It's great that she can transition to that Now. You wrote a book which informed her life experience. How would you go about that with other diseases?

Amy:

So it is a little bit more tricky, because I think what makes what the team at Gambit have told me is that what makes Ask Ellen really quite feel like she has a real soul is because I way I wrote my book in a really conversational style. It was in the first person and so it was certainly easier for them to adapt. So they're working with these other teams to try to create a blueprint that essentially does capture that narrative. So it's, you know, yet to be determined how successful it will be. But but if a book is written in the first person style or there's content that is available in that way, then it is more effective.

Ellyn:

Well, that's very exciting. I can't believe that that that would happen in our lifetime. And how useful for all diseases, right, it's just, it's endless right.

Amy:

Yeah, it really is Like. The potential here is is absolutely um, there's so much that we could do in this way and I know it's needed.

Ellyn:

And before we go, I want to ask personally how are you health wise and where are you at and how are things?

Amy:

Um, I always say touch wood. Um, you know I'm two years out because chemotherapy and the drug that I'm on so I'm on a drug called letrozole which is an estrogen suppressant, and that's fun and games, you know it causes you to have creaky joints and things like that. So it also causes bone density issues. So I go back every six months for an infusion at the chemo suite. So I have two more of those and I see the oncologist at that point. So yeah, it's interesting. I mean they don't really do any kind of routine monitoring. I obviously I don't have boobs anymore so I don't get a mammogram and you know there's always because the cancer was in my lymph nodes. So there's always that niggling worry that you know some some random cells slip past the goalie. But they don't really do any kind of scans or anything. They just sort of say to you well, if you develop a bad cough or start losing weight or you know it's, it is a kind of a weird sort of spot to be.

Amy:

The big sort of number is five years, like the. Usually. If you make five years then you're kind of deemed to be about the same risk as anybody. So that's what I'm striving for. I mean I had my type of breath, because there's many types of breast cancer. My type of breast cancer was kind of I call it the old lady version of breast cancer. It's the most common. It also is a little less aggressive. Oh okay, so I'm hopeful. I've got a cruise booked for when I'm 97. So I plan to hang around.

Ellyn:

I love it. Good for you. And before we go, what would be your one piece of advice to someone who does receive a diagnosis Right after it happens? What would be your one piece of advice to someone who does receive a diagnosis Right after it happens? What would you say to them? Go to Ask Ellen, obviously.

Amy:

Well, I do actually joke. I say that you know she's the parking lot tool and I would love that. So Google is not your friend. You're going to go down some really serious rabbit holes and it's exactly like I built. We built the tool and I wrote the book that I wished I'd had If you do get a diagnosis.

Amy:

The other book that I always recommend to women, because it does equip you to really understand what's going on and to ask good questions of your doctor, is Dr Susan Love's Press Book, which is kind of considered to be the Bible, and you know, if somebody does have a diagnosis, there is a community out there. You are not alone. There are lots of people ready to hold your hand through it and they can come find me. I always take time. You know I have women reach out almost daily through my Instagram account. If they're in a shattered place, we get on the phone and we talk, and that's, you know, again, partly why I created it. You know Ask Ellen exists is because it's hard to do that at scale, and I also don't speak every language like she does, but I just want to help. I just want women to know that they're not alone.

Ellyn:

Well, they're not, and thank you for saying that, and I think you and I need to have a yearly check in because I want to see where Ask Ellen is and how many diseases she's helping. So thank you for creating her and thanks for giving us an update and explaining how it works, and I really appreciate it.

Amy:

Yeah, well, hopefully some of your listeners out there I mean, unfortunately, one in eight women are going to develop breast cancer. So if we don't know somebody or it's not affected us personally, we're probably going to, in our lifetime, know someone that's been touched by this disease. So if we can reach more people and more women and motivate them to action because the sooner that a cancer is detected, the better the outcome is going to be. So I'm just desperate to get that message out to women that they need to. You know, do their self checks, be body aware, advocate for themselves, get the screenings if they're available to them. It's so important.

Ellyn:

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Amy Schlueter

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