Episode 56: Ellyn Winters: From PR Mogul to Breast Cancer Advocate & Innovator with AskEllen.AI

What if you received a life-changing diagnosis despite being at the peak of your health, managing a successful career, and having no family history of the disease? Join us for an inspiring conversation with Ellyn Winters, who shares her rollercoaster journey from high-functioning PR mogul to breast cancer survivor and advocate. Ellyn’s story is a testament to resilience and the transformative power of facing life's unexpected challenges head-on.

Ellyn opens up about her decision to undergo a double mastectomy with aesthetic flat closure, courageously opting out of breast mound reconstruction, and the grueling process of chemotherapy and radiation treatments. She also dives into the emotional and physical hurdles she faced, including the impact of lymph node involvement and medications like Letrozole. Ellyn’s advocacy work shines through as we highlight her groundbreaking topless feature in People Magazine post-surgery and her co-created app https://askellyn.ai/, an empathetic AI companion designed to support breast cancer patients and their families. We explore how this innovative tool, built from OpenAI technology and Ellyn’s personal experience, offers non-judgmental support while urging users to consult their medical professionals. Ellyn discusses the AI's global reach and the move to a nonprofit model, emphasizing the importance of empathy and the common healthcare challenges patients face, particularly in Canada. Tune in to learn about the strength in survivorship and the systemic changes needed to better support those battling breast cancer.
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Elly

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I am not a doctor and not all information in this podcast comes from qualified healthcare providers, therefore may not constitute medical advice. For personalized medical advice, you should reach out to one of the qualified healthcare providers interviewed on this podcast and/or seek medical advice from your own providers .

Transcript

Speaker 1: 0:01

Welcome to Season 2 of Test those Breasts podcast. I am your host, jamie Vaughn. I am really excited to continue this journey and mission into 2024 to help shorten the overwhelming learning curve for those who are newly diagnosed, or yet to be diagnosed, with breast cancer. It has been such an honor and a privilege to be able to connect and interview many survivors, thrivers, caregivers, oncologists, surgeons, nurses, therapists, advocates and more, in order to provide much needed holistic guidance for our breast cancer community. Breast cancer has become such an epidemic, so the more empowered we are, the better. By listening, rating, reviewing and sharing this podcast, it truly does help bring in more listeners from all over the world. I appreciate your help in spreading this knowledge. My episodes are released weekly on Apple, spotify and other platforms. Now let's listen to this next episode of Test those Breasts. Well, hey, friends, welcome back to this episode of Test those Breasts.

Speaker 1: 1:11

I am your host, jamie Vaughn, and today I am so excited to have my guest, ellen Winters Robinson, on my show. So Ellen is a recent breast cancer survivor, co-creator of AskEllenai and author of the bestselling book Flat Please Hold the Shame, a girlfriend's mentor to startups at the Accelerator Center. Ellen's story and AskEllenai have been featured in People Magazine, globe and Mail, ctv and Fast Company. Ellen is also when we spoke for our first time. She's a storyteller. She's a breast cancer rebel and a Supreme Networker, very much like I am. Ellen, welcome to the show. How?

Speaker 2: 2:11

are you? Thank you, jamie, I am great and I'm really happy to be here with you.

Speaker 1: 2:16

I'm really happy too, and you know we had a conversation I always have conversations with my guests before we ever even interviewed, to see if we have that connection and to really hammer out what amazing things we can talk about so that we can help breast cancer patients and even people who've never been diagnosed. And so I just really felt that connection with you, and I know that you did too, and that's why we're here today.

Speaker 2: 2:43

Yeah.

Speaker 1: 2:43

We were like pinky swearing Exactly, and you're in Canada. So whereabouts are you in Canada?

Speaker 2: 2:50

I'm in an area called well Waterloo region is the area. It's about an hour and a half outside of Toronto. As the crow flies, depending on traffic, toronto's worse than New York City most of the time, so sometimes it's three hours to get in there, but I'm about an hour and a half west.

Speaker 1: 3:05

Awesome. I've met some amazing people from Canada, by the way, and, of course, you are nice. Absolutely Every single person I've met from Canada is super nice. Anyway, well, I would love for you to share with our audience your story. I would like you to kind of start with who was Ellen before breast cancer, because I know that we're different after breast cancer. I mean, we're probably we're the people that we've always been at the core in a lot of ways, but we're also very different. So who were you? Who was Ellen before breast cancer?

Speaker 2: 3:37

My doctor tells me that I was probably high functioning anxiety type A person. I have run my own business for 15, almost 16 years actually now, so Ignition. So I am a PR person, marketer, writer that's what I was busy doing and doing the mentorship at the Accelerator Center. I'm also a wife and a mother of two. I have a 26-year-old son and a 23-year-old daughter, and now I have a new daughter. She is my daughter-in-law, and I have a grandbaby as well, but that doesn't come until later. So that was after breast cancer. But yeah, and so I was just living my life. I was healthy and normal and never the person that breast cancer was going to happen to.

Speaker 1: 4:19

Yeah, because it happens to other people, right? Yeah, exactly, exactly.

Speaker 2: 4:23

Yeah, that's what I always thought. It's just not even in my vocabulary. I used to actually say to my husband I was self-employed and I used to say, god, god, fear that I get breast cancer. Because, like that was my worst nightmare, being self-employed. I'm like how would we ever manage? Sure enough.

Speaker 1: 4:37

Yeah, I mean it was in my vocabulary. Just because I've known people with breast cancer. I've always been very mindful of my breast health, known people with breast cancer. I've always been very mindful of my breast health, you know, for quite a few years, and so I always knew. Like I had two lumpectomies in the past. I don't know, it's probably been 12 years now. So it's always been part of my vocabulary and I've always been very mindful of it, but it's still in the back of my mind. It was. It happens to other people.

Speaker 2: 5:05

Yeah, totally yeah, I, unlike you, I have friends that have had breast cancer and I used to always sort of stand in admiration, especially the ones that really sort of reached out and tried to help other people and would connect people to those people. But yeah, it was never going to happen to me. And I was saying I was very, I believe in being very vigilant about your health and I'm a big health nut and you know, try to eat and exercise and do all those things right. And there was no family history. So there was no reason.

Speaker 2: 5:30

In fact, even ironically, about a year, maybe not even about six months before I was diagnosed, I got this letter in the mail from a hospital in Toronto saying that they were doing a study and one of the eligible requirements was that you had to have not had breast cancer and it was like a risk type study. So I thought, yeah sure, I'll take one for the team, I'll spit in the tube and give them my DNA sample and fill out the survey. And when they came back for the second round of sort of research, I had been diagnosed and they were like what the heck? You had a normal platform, you had a normal profile. I'm like well pretty wrong.

Speaker 1: 6:04

Yeah, that is definitely the definition of irony. Well, one of the things we talk about this, that it happens to other people. I don't know about you I think you probably had these comments but for me, when I came out with my diagnosis, people were like shocked. They're like, oh my God, but Jamie, you were so healthy. And it really confused me because I was really healthy and come to find out healthy people can get cancer. It's just the craziest thing.

Speaker 2: 6:31

Go figure, yeah, and I mean I've had funny questions like, well, did you feel sick? I'm like, no, didn't feel sick at all. It was picture of health. And you're right, it was an absolute shock. I remember, after kind of marinating with the news for a couple of weeks and kind of processing myself, and then I did a post on Facebook and same thing Everybody was just absolutely shocked. They're like not you, you're miss healthy, go for mammograms. So that was great, except two of those 17 came back with breast cancer. They were diagnosed with early stage breast cancer. So I kind of cemented pretty early on that talking about this and sharing this and not staying private, that you can save lives.

Speaker 1: 7:15

Absolutely, absolutely. Sometimes I feel like I'm a little annoying because I post a lot, but I don't really fucking care. Sorry, I just I don't care. I have to say that I've had a lot of people reach out to me and say oh my God, jamie, thank you so much for posting, because it's really brought awareness and I went and got my mammogram and I had this scare and whatever it was. If that's what it takes, I'll be as annoying as I possibly can be to bring awareness, because I want people to know that you are not too young, you're not too healthy, you don't have to have it in your family, all the things.

Speaker 2: 7:54

So Yep, yep, yep. I mean the one girlfriend that was diagnosed. She will say to me that you know, she said I swear on a Bible that you saved my life because she wasn't doing self-checks and she hadn't gone for a mammogram. And she learned, because even then she's quite small-breasted and the tumor was quite high and the mammogram, actually, when she did go, even though she felt the lump, they missed it and she fought for herself and she's like no, there's something there. And so she said there's no doubt that that helped to save my life.

Speaker 1: 8:27

Kudos to her. That's awesome. The other myth is that you have to feel something, and that's not the case either. You can visually see indentations and inverted nipple, redness or discharge.

Speaker 2: 8:40

Sometimes it's sore. Sometimes it's sore Because there's all these sort of myths out, myths out there, that sort of occupy our brain, you know, number one being there has to be some family history. Well, that's only. That's less than 10% of people that are diagnosed. That one still shocks people when I tell them that and I told that to a lady last week and she's like you're kidding me. So yeah, there's.

Speaker 2: 9:01

Yeah, I don't think I really felt the cancer. Especially as you get older you sort of get patches of density and it really wasn't until the surgeon felt me that he could spot where the cancer was. What I felt was actually a breast lobe that the cancer had pushed down and out and it was like this sort of round, almost an olive kind of thing, under my areola and I knew it hadn't been there. So I knew there was something. But we actually both my GP and I, thought that maybe it was a fatty cyst and that's kind of. When I went into the diagnostic mammogram I kind of was like thinking that was what the case was, but nope.

Speaker 1: 9:36

So what age were?

Speaker 2: 9:37

you when you were diagnosed 57. I was diagnosed on March, the 10th of 2022. And I had my biopsy on April 6th, two days before my 57th birthday.

Speaker 1: 9:47

Yeah, you said April of 2022? Yep, so I was diagnosed in June of 2022. You and I were yeah, you're just a little behind me. We were rocking the treatment at the same time.

Speaker 2: 9:59

Yeah, I'm hitting all my two-year anniversaries now, so next week, on the 31st, will be the anniversary of my surgery, so I call that my cancer be gone day, okay.

Speaker 1: 10:08

My cancerversary is June 11th and it'll be one year. These dates just get cemented.

Speaker 1: 10:14

I know, and it's like June 11th is also just last year is the one-year anniversary of the release of my podcast, and the reason I like to interview people like you is because I really, really, really want to bring awareness to people, even when they've never had breast cancer and I have had people, not very many, but I think they do wonder why are you wanting to bring awareness to people who've never had breast cancer?

Speaker 1: 10:40

It's not even on their radar and to me I'm like I want it on their radar because even women, you need to be that early warning system. Yeah, absolutely. I mean, you are the prime example of that irony where you went in and you did this to help other breast cancer patients and then all of a sudden you get it and then when you're hit with it, it's so overwhelming. There's so much out there and I want people to be aware and I want them to know where to go to get those resources. I'm a connector, so my podcast I just connect people like I bring people like you on and physicians and all of that.

Speaker 1: 11:20

So that people can get those Like. I'm not a doctor, but I know where to find the answers.

Speaker 2: 11:26

That was important to me too. It's not every woman, I mean. You're so paralyzed, like you're hearing white noise, so when you first hear those words that you never think you're ever going to hear, and you know, you do things like hit Google. You can go down all those rabbit holes and it's just as we all say Google is not our friend, dr, google is not our friend. And then the other thing you do is you join these groups.

Speaker 2: 11:51

Like I joined a bunch of sort of Facebook groups. Some are good, some aren't and I remember joining one and again I was still really in the early stages of kind of grappling with what had happened and terrified. I was absolutely terrified and I joined these groups and you sort of walking into this room of almost collective trauma. They're like you got this which I now have come to hate that phrase but you got this and I'm like, yes, I got this. And then they start talking about dying and warning people that are going and I'm like I had to leave, I had to get out of these groups. I can't even go back to them now. Honestly, it's still kind of triggering to go back there, because it's really sad.

Speaker 1: 12:24

It is very triggering, and one of the pieces of advice that I do give people is if you're going to enter one of those support groups, you're allowed to leave If it's not something that's resonating with you, if it's something that's really freaking you out, or whatever it is, get out. And yeah, you have to protect yourself.

Speaker 1: 12:43

Yeah there are plenty of support groups that are not like that, and so I'm the same way. I stepped into some of them and stepped right back out. So what were your treatments like? So you were diagnosed. What stage were you? All the things, yeah.

Speaker 2: 12:58

So I was I call it old lady breast cancer. I was diagnosed with ER PR positive, her2 negative, which is the most common form of breast cancer. I was diagnosed with ER PR positive, her2 negative, which is the most common form of breast cancer, much to my shock, given I'd had a in the words of my surgeon, an unremarkable mammogram in 219. So, almost two years to the day, I had three tumors in my left breast and I remember the doctor giving me these numbers over the phone when she first called me. And I'm like what? Because the radiology report was showing that one of the tumors was 3.8 centimeters, which the equivalent of that is inches.

Speaker 1: 13:34

It's like about mine was five centimeters and I believe that's two inches.

Speaker 2: 13:41

Yeah, okay, yeah. And then so after surgery it was actually it was closer to five, it was 4.5 centimeters, so yeah, and I'm like how the heck? And I remember talking to a friend who was a fellow survivor and she's like whoa, you grew a whopper. I'm like I have no idea how that happened. And again, there was nothing in 219 and I was. I went regularly for my mammograms, so yeah, it was just the shocker, yeah. So I ended up. They did surgery.

Speaker 2: 14:05

First I opted to have both my breasts removed, mostly for symmetry. I mean, I sort of read the surgical write-ups and I just didn't trust the right side anymore. Quite honestly, the left one had betrayed me. And then just for symmetry. And then I chose to have something called aesthetic flat closure. So I didn't do breast mound reconstruction and there was a bunch of reasons for that. I didn't want to have to take tissue from another part of my body. I would have had to have stayed flat for a year anyways because of radiation and, honestly, I had spent two years in lockdown before this and then cancer took a year for me and I just went, screw it. I just want to travel and I don't want to be going in and out of surgeries all the time. So zero regrets there. I've become quite an advocate for aesthetic flat closure and again have shared my story very openly. I do claim to fame that I am the first woman to appear topless in People Magazine, because I have no top.

Speaker 1: 14:58

I saw it and it's absolutely magnificent, magnificent, love it.

Speaker 2: 15:05

Yeah, and then all the way along, they said that my lymph nodes looked good. I had two surgeons feel me up and feel a little on my collarbones and everything looked fine. And then, when we got to pathology, the surgeon pulls out his little highlighter and goes well, here's where good things get interesting. And sure enough, the cancer had crept into my lymph nodes on the left side, and so with that, then I ended up in chemotherapy. So I had 12 weeks of chemotherapy not the Red Devil. I was surprised by that I had.

Speaker 2: 15:34

I can never pronounce it, but it's called CycloDose, so it's a combination of a taxine-based chemo and CycloDose. I can't pronounce the name. Okay, and then 15 rounds of radiation. So I finished treatment end of November of 2022. And now I go back every six months and have Zometa infusion, because chemo and the letrozole drug that I'm on, you know, turns your bones to Swiss cheese and, being the old girl that I am, so I want to make sure that they stay nice and strong. So that's where I'm at. So I think I've got two more of those.

Speaker 1: 16:07

I had HER2 positive, estrogen progesterone negative, so, but I started, so I had my surgery afterwards, so I finished mine in October of 2022. And then I had my surgery in December of 2022.

Speaker 2: 16:21

You and I were just like yeah, that's sort of the standard protocol for HER2 positive, yeah, or triple negative as well, I think they do neojuvenate first, so sometimes they do it like. I know a young lady. She was only 32 when she was diagnosed and she just wanted to save her breast as much as possible, so she had the same surgeon as me. So they did chemo first with her to shrink the tumor and they were successful in doing that so they were able to move forward with a lumpectomy.

Speaker 1: 16:44

Yeah, and that's also other myths out there. Like I told, you know everybody on my group that I started, that I was going through the chemo first, then the surgery, and there are a lot of people are like, well, why can't they just get in there and cut that sucker out of there? And I did. I asked my oncologist I mean it is a good question and she said they do. This is the protocol they use so that they can see the efficacy of the chemo.

Speaker 2: 17:08

Will it shrink your tumor If?

Speaker 1: 17:10

something happened in the future? Would that chemo work for you, Things like that? So that made more sense.

Speaker 2: 17:16

I just have to go on blind faith, Like it helps me to hear from folks like yourself who have had neojuvenant chemo to see and to be able to see in the imaging that it actually works, Because in my case the cancer was all gone out of my body. It was all just sort of I'm like no, it's preventative, so I just have to kind of go on faith that all that stuff did its thing.

Speaker 1: 17:35

It was really cool because I remember going in to my oncologist. I think it was after my second treatment. We went in and she felt it and she goes. It is shrinking and I could feel that it was not as large or hard as it was before. So interesting all that stuff it is.

Speaker 2: 17:53

It is, I mean, it is crazy. Well, I guess they kind of know what they're doing. They do.

Speaker 1: 17:57

They do, I like to believe so, yeah, so I want to talk about your survivorship, because you've got some really fun things going on here. Number one, you have askellenai. Let me step back real quickly because I forgot to say something. I don't know if you've heard my last episode that I just released by Kristen Dahlgren. Kristen Dahlgren is a former correspondent from NBC and she's a breast cancer survivor and she is helping to fast track a vaccine, which is so exciting Helping to Fast Track a.

Speaker 2: 18:29

Vaccine, which is so exciting. I know, I know Absolutely. In fact, after we spoke, I went in and made sure that Ask Ellen could talk about breast cancer vaccines.

Speaker 1: 18:37

You know what, and you told me to go in later that day and I did. I want you to talk about how that works, Because when I looked it up when you and I were having our conversation, I looked it up and it she was okay, but not great. She didn't know yet, but now she knows. So tell us about what this is.

Speaker 2: 18:56

I'll back up one more step myself. So we talked about wanting to help people. You set up a place. You just get this fire lit under you when you go through this and you're like, damn it, I'm going to make this better for other people. Some people do not. Some people just turtle and put it on a shelf and forget about it. But you and I are not that type.

Speaker 2: 19:17

And so where I think started for me because I'm a writer and a storyteller, that's what I do professionally I actually decided I would write a book, and the book was this is the flat, please. Book, and it was really to try and just tell the story of a woman that was diagnosed and literally in first person format kind of take whoever was reading through that process and how I was feeling in that moment. You're sitting right beside me or I'm feeling all the same things that you're feeling. And then in each chapter I would point off to some resources. So you said I know how to find good things. So it was pointing people off to good information. So I kind of have done all this research, I'm going to package it up in a book and I'm going to give it to you. So that's really where things started and I hadn't yet published the book was about a year ago now, and, because I work in tech, it's just funny how these all sort of intersections happen and I swear to God, the universe is at work here.

Speaker 2: 20:13

But I was on a call with one of our startup founders and this topic of me having breast cancer had come up. And this guy, his name's Pat, and he's gone on to found a company called Gambit. But Pat is a very inquisitive guy and he asks lots of questions and his brain is just always working. And he started asking a whole bunch of questions and I'm like look, dude, I'll send you my manuscript, go read it. So he did and, unbeknownst to me, he had recruited some friends and ChatGPT had just come out and they were experimenting with what was possible and they wanted to do something around AI for good. They wanted to demonstrate to the world that AI wasn't this big, scary thing, that it could really be a catalyst force in solving some of the world's biggest problems. And I was this use case that just landed in his lap and within three weeks they had the first version of Ask Ellen, which is the AI, my digital twin. They had her up and running and she was answering questions and she knew everything that was in my book and she knew how I told my and she was talking to us. It was mind blowing and so kind of fast forward. We still thought we were just kind of showing the world what was possible.

Speaker 2: 21:24

And then I sent her in August of last year. I sent her to a head of breast imaging at a hospital in Toronto and I got an email back from her saying how fast can I get this? My patients need this. And that was when we kind of went oh, oh right, and so I kind of built the thing.

Speaker 2: 21:39

We ended up building, the thing that I craved, which was this hand to hold and that non-judgmental companion and confident that's there at two in the morning, that's you know whenever you need her and she's never going to say the wrong thing. But she's not just for the patient, she's also for the husband, for the children. We've had people use her for gift basket suggestions. It's really crazy Like she can perspective shift. You can ask her a question as a child and she'll actually respond like a mother would to a child in very simplistic language. So what they built is incredibly powerful. I kind of know credit for that. I just was a lady with a cancer story, but what they've done in terms of bringing this other me to life is really powerful, so she's pretty cool.

Speaker 1: 22:24

When things come up, you can send information so that it pops up. So when we talked about the vaccine, you were able to go in there and she was able to have. Yeah.

Speaker 2: 22:36

So the way they built her there's I mean, it's a terrible name, they call it an ingester but I have backdoor into her knowledge. So the knowledge sort of was initially formed like it, like open AI and chat, gpt and my book made a baby together and it's intertwined. You know my experience with the world and the rest of the world's knowledge, but my life goes on, so when my book ends I'm bald and ringing the gong, you know, after radiation, and so obviously my life continues on, and so they've created this backdoor. So it's very, very simple for me to go in and add additional information to her knowledge. So she now talks about chemo curls.

Speaker 2: 23:15

Because I'm the poster child for chemo curls, she talks about it and I want her to be very inclusive, so she's like the smartest friend out there.

Speaker 2: 23:22

So she knows about her two positive and she knows about triple negative and she knows about trans males and their experience with breast cancer or male breast cancer, or that's be just demonstrated. She now knows about the breast cancer vaccine. So as things come up and I go, oh, that's good, or she's not really answering the question as I would want her to or as in depth as I would want her to, then I can add it in. But the one thing about her is and the one guardrail we put on her is, first and foremost, she has to be empathetic and kind and she has to sound like me I mean in written form and the other is that she's non-medical. So we're very, very explicit in not having her. You can ask her medical questions, she will give you my lived experience, but she'll always say you really need to go talk to your doctor because I'm medical system friendly and I didn't want to be playing the role of WebMD. That's not what her job is.

Speaker 1: 24:14

I'm so blown away by that. I'm so excited I've been playing with it, oh my gosh. So do you have statistics? Are you able to find stats on who's looking in there and what areas from the world?

Speaker 2: 24:30

We launched her in October so the end of October and carefully stepped her into market because there is a cost to every time somebody has a conversation with her there's a cost to ask. So I formed a nonprofit and so I'm in the process of trying to get funding in the door to keep her running and we're committed to do that. I've kind of zel it. I can see so clearly the impact that she could have. So this is going to happen. I come hell or high water. So we've only really done organic marketing and word of mouth marketing to date. That's about change.

Speaker 2: 24:59

But we've had over 15,000 interactions, so those would be question responses. We've had 38% of people that are coming to her are having extended conversations, so they're asking her questions. She's doing an answer back and then we're asking another question. The longest duration conversation I think we've had so far is 48 minutes. Wow, somebody talked to her for 48 minutes, yeah, and we've not had a night where we haven't had questions between one and five in the morning and we've had, I think, 10.

Speaker 2: 25:30

So she speaks almost every language. We've certainly tested her on many, many, many and she speaks most languages and we've had access from about 10 countries around the world so far. So we're having conversations with a medical team in the US about maybe taking her to Uganda, and so there's this opportunity for her to support. There's not a day goes by through my social media accounts that I don't talk to a woman and lend my hand and extend my hand for support, but I can't do that at scale, and so this is an opportunity for us to scale that knowledge and support globally, and that's pretty cool.

Speaker 1: 26:05

I love that you made it into a nonprofit, because that's what I just did with the podcast. I want to be able to keep it going. You know it is self-funded and I'm retired, so it's really kind of hard to keep that going. In the show notes I will have your website and where people can donate and also your social media stuff. I'm just so thrilled that you did that. Can you go on there and say what resources can help?

Speaker 2: 26:32

Yeah, it may be reintroduced. We did at one point we had, I mean there's, so it's technology, so there's always little gremlins that creep into things and we always want to make sure that it's a quality response. We were getting a few. This is not us. This is opening eye. There were some issues with certain links that she was providing. They just weren't working, and so we've removed links for now to other resources. I hope that that will get reinstated.

Speaker 2: 26:56

But she's going to give you all kinds of knowledge. She'll point you in directions. She knows about the American Cancer Society and Canadian Cancer Society and different resources and groups around the world, and so she'll talk about them. And then you know it of a Google search to go off to those things. So I just relaunched her look and feel and she's now part of a larger website. So askellenai now has a blog and so people can come and interact with the content in whatever form they want. So you might want to read an article, they might want to have a chat with Ask Ellen, they might want to talk to the real me, so those things are all available to them now through this new website.

Speaker 1: 27:35

So, yeah, and maybe a podcast. Maybe a podcast. She could refer my podcast, maybe she could. Yes, she will Go to test those breasts.

Speaker 2: 27:42

Yeah.

Speaker 1: 27:43

Yeah, absolutely. I just think that's so fun. I thoroughly enjoy talking to people like you. I just think it's so fascinating and it sucked the way we had to get to this place, but at the same time, wow, there's. So it's just a whole world out there, a sisterhood, people who just want to provide as much information and support as possible.

Speaker 2: 28:06

Yeah, we say I'm sure you've heard the line, you know it's the worst club in the world with the best members. Absolutely, it's crazy, like I yeah, it's, it's strange. I mean it's like the absolute. The old me would have said this is the absolute worst nightmare. I did say that.

Speaker 1: 28:20

Me too.

Speaker 2: 28:21

And then I'm like, wow, I actually look back on this last two years with a lot of gratitude that it's really brought so much purpose to my life, and that's pretty cool.

Speaker 1: 28:33

Me too, and it's. I've met some of the most amazing friends, and I don't know if I told you last time I think I probably did but I've got three beautiful breast cancer survivor friends One's a previvor and two are survivors and we had never met each other in person. We've been talking to each other for at least a year and a half on FaceTime. We've just become really super good friends and we all went to San Antonio just last week. Oh, you did, we did. I would show you on here, but I have to put this on YouTube. Crystal and Courtney, who own Perky in San Antonio, are two nurses who do medical grade nipple and areola tattoos for breast cancer patients, and we all had the most amazing time together. We stayed in an Airbnb. We all just got along so well and I just feel so much closer to them. I mean, I would never have met these ladies had I not had breast cancer.

Speaker 2: 29:27

I just had to step back. I was invited to go to New York, which is crazy. It's like such a bucket list thing at the age of ripe old age of, and lumpy age of 59, to go do a bathing suit shoot with Andes, and I couldn't string three days together to do it and so I had to pull out. But two of my friends, who same thing, never met them but they become really good friends. So there's Branwen in Chicago and Christina, she's from Connecticut. They're both flatties like me. Anyways, they got together and they're both from Long Island but they've never met. And then they got together and now they're like twinsies and they were shooting me all these pictures of them on the shoot and I was just so happy for them. So they're like well, we miss you, but I'm just happy that they were able to get together themselves and I'm just happy that they were able to get together themselves.

Speaker 1: 30:18

You know, ellen, there is a breast cancer symposium in San Antonio in December. I don't know if you've heard of before, but I think that that would be really cool if you could reach out and get a booth there. I am considering signing up to have a booth for my podcast, so maybe we could figure out something to bring you know kind of meet there, Cause I ask Ellen, hello, I'm desperately trying to get this funding right.

Speaker 2: 30:41

So I've got a little bit now. I did get my first grant, you know whether it's sponsorships or I've just got to get some revenue happening because there's so much I want to do and I don't want to be a nonprofit. You know, for 50 cents I will have a donate button on there, but I think there's such an opportunity for corporate sponsorship. And you know, again, that brand association, to be there and have your brand with that person at two o'clock in the morning or at their most vulnerable moment, that's a very impactful thing and where most companies are looking for social impact. Now I can think of nothing better, but you know I'll put it out there into the universe. Somebody's going to hear me.

Speaker 2: 31:20

I tell the story that I had a woman reach out and again, our growth is modest right now, deliberately so. But I had a woman reach out who I do not know, through the system and she thanked me for what we built. And she said I was very anxious because I was taking my bandages off and I was seeing my scars for the first time, and we know what that's like. That's a very vulnerable moment because your bodies are not the same after it and she said I was able to talk to your AI and I learned that we had a lot in common. And she said you were there with me and thank you for that because you got me through that time. And I'm like no doctor's going to do that, no nurse is going to do that, your family members aren't going to do that. You're like it's too traumatizing for everybody. And so to know that I was able to kind of digitally be there with her and hold her hand through that, that was like I got to figure out how to get this.

Speaker 1: 32:12

Absolutely, ellen. I just got tears in my eyes because of that, that I don't even. I don't even know what to say to that other than thank you for putting that together, because there were many times where I was up in the middle of the night and just horrified and saying such a deep, dark hole of depression and fear that I would love to have had something like that.

Speaker 2: 32:38

That's why we also made her private, so you don't register for her, there's no questions that you're going to ask that are going to get recorded anywhere, and that was again a very intentional thing on our part because we wanted her to be this. It's like I'm not Catholic, but it's like going to the confessional and you don't see the priest on the other side of the wall. You know, you just it's, and so that's really it's. You could say the most terrible things if you wanted to, or express your deepest, most fierce things you would never even share with your family, or your family may just hate you right now because you're, you know, an absolute wench. I know my family, I think, hated absolute wench. I know my family, I think, hated me because I was like they're like what the heck happened to you? And it would have been good to know that they had a place, a safe space where they could go and just say whatever and ask whatever and no one's going to judge.

Speaker 1: 33:23

Absolutely lovely. Well, I will be making sure that to put it on my website, I'm building a resource page where people can go to and have. I'm going to do the same. Awesome, thank you. So I want to ask you one last question. You know you and I talked about being healthy and people wondering how we got breast cancer and we were so healthy, and one of the things that we talked about is is that you can be healthy, healthy, healthy, being healthy is a good thing. So the healthier you are, I have found, is that you can get through cancer and all the chemo and all that better than if you are unhealthy. So what is one big piece of advice and you can give two if you want to to people who have never, ever even been diagnosed with breast cancer?

Speaker 2: 34:11

Yeah, so kind of touches on that. And one other topic that we've already touched on, which is nobody is going to take responsibility of your body other than yourself. And so, except that one in eight women are going to get diagnosed with breast cancer in their lifetime, one in two humans are going to get cancer in their lifetime. So we need to be aware and so you need to know your bodies, you need to do those self-exams, and if screening is available to you, then you need to go get screened and not be afraid about it or intimidated by it or say it's too painful or worry about how much radiation you're getting in a dose of a mammogram, because I'm like it's infinitesimally small and I'm like, guess what, if you end up getting diagnosed with breast cancer, you're going to get a hell of a lot more radiation. So that would be my first piece of advice, and the other is getting healthy, staying healthy.

Speaker 2: 34:59

I lost both my boobs and I was back doing pushups and planks and weights three weeks after my surgery and had no complications and was still out power walking miles at a time during chemo, and I remember my oncologist going what, and they kept waiting for some side effect and it didn't happen.

Speaker 2: 35:19

So I didn't have any neuropathy. I certainly lost my hair, but I was really able to weather chemo very well because and I really do I mean she did say to me she said when your glass is full, you have more to drain from right. And so I don't think we can ever and this is not just cancer related, I mean being in good health, exercising, eating well, doing all the right things will serve you in any health crisis, whether it's a car accident or whatever. So I'm a big proponent in that. You know, when I got diagnosed, I continued. In fact I stepped up my exercise. I certainly laid on the couch and felt sorry for myself a bit, but I also went. I'm training here, I'm training like I'm training for a marathon, and that helped me process what I was going through as well, so emotionally.

Speaker 1: 36:06

Yeah Well, one of the things that I was told from the get-go is get up and go walk. I don't care if it's to the mailbox, whatever, go walk. But so after my treatments, my husband and I we walked every night. We walked the dogs and I got my sweat on, and I just know that that helps also with the efficacy of the chemo.

Speaker 2: 36:29

It does. There's scientific evidence that shows that exercise. You know one of my concerns, especially because I had a double mastectomy and I even had my husband's personal trainer. He's a kinesiologist and she was looking and she had a heck of a time finding anything. It's not a lot of really good information out there. In fact I'm going to write a blog about this because it was such a fear of mine that I wouldn't be able to do all the things. And that's not true.

Speaker 2: 37:09

Nothing that I did before that I can't do now. In fact, now I don't have any excuse. I used to say that I never ran because I had big boobs and they bounced, and now I don't actually have that excuse anymore. So now I have to say I've got sore joints from letrozole. But yeah, I mean there's nothing that I can't do or don't do. And I joke and say I actually can get very low with a pushup. Now that must feel really good, not having those big boobs bouncing all over the place. It's actually quite freeing. I mean I really can't say I do not hate not having boobs. I mean I wear backless dresses, I don't have to wear a bra, I wear spaghetti straps. So I've actually gotten very experimental with my fashion choices.

Speaker 1: 37:51

I love that One of the girls that I went to San Antonio with. She said that before breast cancer she had like porn boobs. She said they were huge and she has a very, very, very small frame. And she said her boobs were so huge and now they're super small, they're smaller than mine and she's like I love them. They fit my frame so much better.

Speaker 2: 38:09

I mean if reconstruction had been something that was more available to me and if I had wanted to go through it, I still would have gone smaller right. Definitely I was a D cup, so you know, I have one more question.

Speaker 1: 38:22

I'm a no cup, I love it, I like smaller breasts and I feel like I probably, if I couldn't have done the reconstruction I did, I probably would have stayed flat. And that's the beauty of it all is is that you get to just decide. You get to choose what's best for your body, and we're all beautiful in our own ways. And you know, I do have this one question. I don't know if you can answer it or not. I have a friend of mine, a very, very good family friend of ours for many, many years, who is waiting for a biopsy result. She is in Lethbridge. I think I had mentioned her to you before. She still has not found out. She said that there's such a huge doctor shortage in Canada and that's kind of happening in the United States too, and she said it's happened since COVID. I'm trying to figure out how like she just has to wait until she finds out this, yeah, unfortunately it's a system issue.

Speaker 2: 39:19

I mean A we're public health care so you can't just sort of you just kind of get assigned people. It's not like in the US where you can shop around, you know your provider and your surgeons and things, and you know, I think system wide, anybody that could retire did retire because after COVID they were like we're out of here, sort of thing. And yeah, the wait times are significant. Lethbridge is a smaller city too, so it's less resources but the waits are far too long. The system knows it. They're trying to do something about it.

Speaker 2: 39:47

But I knew I had cancer on the 10th of March because all my BI-RADS were showing BI-RAD 5. So it was like it would be a shocker if it wasn't cancer. But then I still had to wait four weeks between hearing I had cancer and getting a biopsy to find out what kind of cancer and get that surgical consult and I lost 10 pounds in that four weeks and there's just then again this is where you know where Ask Ellen comes in. I was so shattered and they just kind of like bye. You know, like I just heard over the phone from my doctor, you know I had cancer and then it's like figure it out, ellen. There's just nothing there. There's no soft landing for you, and women are waiting an extraordinary long time, even for mammograms right now, like six months a year.

Speaker 2: 40:30

That's what I heard, even if they've shown up with a problem. The system's just crazy and Canada, like the US, most of the provinces in Canada are actually moving from 50 to 40 in terms of starting screening, and I know, province of Ontario where I live, that screening is now going to be you'll be able to self-refer, you won't have to go to a doctor. I'm like, how are they going to deal with this? So I work quite closely with GE Healthcare. They've been great supporters of mine with the Ask Ellen. I've asked them a couple of times. I'm like whoa, your sales have to be going through the roof here. And they're like, yeah, hospitals are calling up saying we're opening up rooms, we don't have the budget. Yeah, that's scary. Yeah, I feel for your friend because that's a terrible, terrible place to be.

Speaker 2: 41:10

Yeah, I've been checking in with her a lot Things do move fast, though the only thing I can say is that you know, once they have that information, then things typically move very fast.

Speaker 1: 41:19

She's supposed to see her surgeon in early June. Okay, by then she should know that. But I mean just that waiting. I mean I was lucky because I'm personal friends with our breast radiologist and he was able to get me my information within 24 hours.

Speaker 2: 41:36

Yeah, Unfortunately it does. It works the same here, Like if you know somebody you can kind of make some phone calls and things, but yeah, that waiting is just absolute torture, torture.

Speaker 1: 41:48

So I actually am sending her your app. I think I already sent it to. Well, I think I sent it to her. Regardless, I'm going to be sending it to her. Please do and tell her to.

Speaker 2: 41:57

You know, if she needs to talk to somebody or a fellow Canadian, I'm always not. A day goes by I don't speak with women that are going through this and just to gain the human we can't do it. You know extraordinary scale, but I'm absolutely happy to do that.

Speaker 1: 42:10

Oh yeah, I'm definitely going to give her your information in the show notes. I've got how people can reach you your email address, your Instagram, your Twitter, your LinkedIn, your Facebook. I also have you the the thing you're in for people magazine, so I'll include that. I just love it. It just is so bad ass, really honestly. And then there's quite a few resources you have in here, like we talked about this last time Dense Breast Canada and your Ask Ellen, ai and a couple of others, the Lindell Project and also your book Flat. Please Hold the Shame. And so I just want to thank you from the bottom of my heart for joining me on this episode. This has just been so enlightening and I'm glad that I have a fellow breast cancer sister where you are and I know where I can reach out to you if I need any kind of other resources and maybe yeah, and if you're up in Toronto anytime I'm like don't come in.

Speaker 1: 43:08

February, just saying don't come in February, okay, I won't come in February, I come into the other time. No, I actually really would love to come up and visit. I do have a couple of other people that are there that I would love to visit, so I will definitely keep in touch with you. And is there anything else you would like to leave us with before we wrap up?

Speaker 2: 43:34

No, jamie, I just want to thank you back. I mean we're doing this because it's heart work, right, it is hard, and we just want to help. I mean it means so much when you get these women who you know. You shared a story about somebody reaching out and saying that it you know what podcast of yours was just so incredibly helpful. So, strength in numbers, man, we just you know, was it? The rising tide lifts all boats, and so that's what we're doing for the others that are out there.

Speaker 1: 43:48

Yeah, and I like this space because it's not that I haven't seen this before, but, for the most part, everyone I have connected with we're in this together. It's not about competition, it's about collaboration together to help other women. I do always find it interesting there's a couple people out there who are very private and protective of what they're doing because I, for whatever reason, I'm not a moneymaker for this thing, so I'm more just putting it out there to help people. So that's why I really love connecting with people like you. So thank you, yeah.

Speaker 2: 44:24

And that's not not the motivation behind this. Yeah, not at all, but yeah.

Speaker 1: 44:30

Well, thank you again. I hope you have a good rest of your week and, to my audience, thank you for joining me and Ellen on this episode of Test those Breasts. We'll see you next time, but first make sure that you go to your favorite platform and rate and review this show. It's very, very, very helpful when people do that. So I really appreciate it, and we'll see you next time, on the next episode of Test those Breasts. Bye, ellen. Friends, thank you so much for listening to this episode of Test those Breasts. I hope you got some great much needed information that will help you with your journey. As always, I am open to guests to add value to my show, and I'm also open to being a guest on other podcasts where I can add value, so please reach out if you'd like to collaborate. My contact information is in the show notes and, as a reminder, rating, reviewing and sharing this podcast will truly help build a bigger audience all over the world. I thank you for your efforts. I look forward to sharing my next episode of Test those Breasts.