Episode 39: Kim Maples' Journey: Thriving Through Early Detection & Self Advocacy

.When Kim Maples was diagnosed with ductal breast cancer at 39, her world turned upside down. Now, she invites us into her life-altering journey, sharing the challenges of treatment and the power of self-advocacy. This episode is a tapestry of courage and wisdom, weaving together Kim's personal battle with invaluable advice for those facing a similar ordeal. Through her narrative, we uncover the generational shifts in cancer awareness, highlighting the importance of knowing your medical history in an age where health information is more accessible than ever. Her story serves not only as a beacon of strength but also as a reminder of the collective fight against this pervasive disease.

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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: 0:00

Welcome to season two 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 and YouTube. Now let's listen to this next episode of Test those Breasts. Well, welcome back everyone.

Speaker 1: 1:08

Welcome to this episode of Test those Breasts. I am your host, jamie Vaughn, and today I am so excited to have my new friend, kim Maples, on my show. We actually met. We were getting our nails done here in Reno and she was sitting next to me and listening to me tell my story and talk about my podcast to the gal who was doing my nails, she just sort of peeked in and we started talking and we've had conversations since then on the phone and I'm just really thrilled that she's here with us today.

Speaker 1: 1:46

She has some really great information to you know, put out there to my audience, and so I just want to give a little bit of information about Kim. So she was diagnosed with ductal breast cancer in 2017 at the age of 39 and went through surgery, chemotherapy and radiation treatments that same year. After radiation, she's been on a different endocrine treatments for the last six years and maybe on them until 2027. Having gone through many of the more common breast cancer treatments, she has some great advice and recommendations for listeners considering which treatment to go through, who are actively going through treatment and who are post-treatment and trying to make a lifestyle changes to keep it from coming back. Well welcome Kim. It's so great to see you and hear you and I just appreciate you're having this conversation with us. How are you today?

Speaker 2: 2:45

I'm great. Thank you so much, jamie. That was so funny that this ended up happening, based on me eavesdropping on your conversation with your nail tech.

Speaker 1: 2:53

So thanks so much for welcoming yourself.

Speaker 1: 2:56

Yeah, I don't have any problem with people eavesdropping.

Speaker 1: 2:58

I kind of actually hope that people are to be honest with you.

Speaker 1: 3:03

As my audience knows, I went through quite the ringer with my own breast cancer and you know, even though it was considered that, I, you know, caught it early. I was stage two and you know I just went through a lot of stuff and there were so many things that I just did not know before cancer and I knew a lot. I mean, I had friends who had breast cancer, I knew people, but it was astounding how much I did not know and how much more I had to learn how to advocate for myself and understand the options out there. So talking to people like you really truly makes a huge difference in helping people understand what their options are and just shortening the learning curve, for you know all these people out there. So I just want to start out. I always try to start out with this just because I think it's really important to understand who my guests are, who they were even before cancer, before this even was a blip in your mind. So who was Kim Maples before cancer?

Speaker 2: 4:09

Yeah, well, I grew up I'm a military brat grew up in the Philippines and in Hawaii with my dad being in the Air Force, and then, at 19, went to California, went to Southern California in the Riverside area for college, for community college, and then moved to San Jose State and I lived in the Bay Area for the next 10 to 20 years and then recently moved to Reno about three years ago. I have a family, a husband, children. Cancer was, you know, something in my mind at those times that sort of older people got. You know, it wasn't something that I even needed to have on my radar in my 30s and when I was diagnosed my children were very young, so they were one in three years old at that time and you know, cancer was like the farthest thing from my mind when you're dealing with lack of sleep and you know, childcare while working full time and life and all sorts of you know marital things that are happening with the new family and kids. So you know, life was very busy, life was hectic, life in the Bay Area for everyone, for those that might live, there is a very fast paced lifestyle. You know you work a lot, you, you know, but I, my grandparents, two of them passed away from cancer, but it just didn't. I never thought to inquire. It wasn't like, oh, let me learn more. And I think after I was diagnosed with breast cancer, there's a lot of genetic questions that come into your mind right, especially at 39. When you're diagnosed early, you start thinking like, oh, is there a correlation? And I get into this. But for me there wasn't a genetic correlation.

Speaker 2: 6:00

But I remember asking my dad, who you know is a boomer, I was like how did your mom pass? How did grandma pass? And she passed when I was about three years old, so I was very young, and he goes lady part cancer, who had a lady part cancer? And I was like dad, lady part cancer. I was like ovarian uterine breast, like what is lady part cancer? And he's like I don't know.

Speaker 2: 6:30

And I think in those days right, there wasn't a drive for more information to really get to the heart of it. And what's the primary? Was there a secondary? And you know all these things and he's just like I don't know what to tell you, like I don't know. So and I asked my mother, who's mom passed of cancer? And my mom, my mom is Asian, she's from Taiwan. So my, my, my, my grandpa, my grandmother died in in Singapore at the time, so she wasn't super close distance wise when she passed and I remember asking her how did she pass? He's like you know, I don't know. All I know is that our belly button turned black. You might have had stomach cancer. I don't know. And I said primary, secondary. She's like I have no idea.

Speaker 2: 7:13

So I think it's so interesting now at how much information we have and at our fingertips and you know, you and I just even talking at the nail salon, like I over, and it's funny when you hear someone talking about breast cancer after you've been through years of you know it's just never ends. You just constantly like it's a little radar, you just pick up on it and then you want to talk because your podcast is so excellent in the way that most of the information you get from doctors Doctors is very helpful as far as, obviously, keeping you alive. But sometimes the treatment is almost as bad as the cancer or worse. So, and a lot of things that the doctors can't tell you how to supplement herbal thing you know what I mean Like things that are not, you know, in Western world, scientifically tested and verified. So it really helps to have like a tribe of people who've been through it and have little tricks and tips and and yeah, it's not stuff that is like clinically trial or anything like that. But goodness, I'll talk a little bit about it.

Speaker 2: 8:19

For five years ago, you know, I was icing my fingers during chemo to try to keep it from neuropathy from coming up right, and then I talked to my doctor who's like do it Excellent? This was six years ago now. Now, clinical trials. I'm seeing data come out from news articles saying that, oh, you should actually ice your toes and fingers for neuropathy. I'm like, yeah, that was there six years ago, but they couldn't talk about it because there wasn't a trial. So it helps to have a forum like this, right, right.

Speaker 1: 8:48

That's great that you put this together. You know it's really interesting. I've talked to quite a few people and even I have a friend of mine who has, who has been going through breast cancer and she's a little bit older than I am and it was really interesting when she finally she found out that I had breast cancer and at some point she reached out to me and I. The conversation I had with her was so interesting. I was so completely different than she was and in that I talk about it all the time, like when I first got breast cancers I had a friend of mine tell me that it is the sisterhood of all sisterhoods. Oh it is.

Speaker 1: 9:27

And she says you just wait, girl, and it really is. And I mean I've, I've like become really good friends with people that I don't even I've never even met in person. They're all over the world and on Instagram and things like that. And this particular friend of mine used to be my boss at one of the schools and she just didn't talk about it much. She was super quiet about it and I think part of it is that generational piece that you were just talking about that.

Speaker 1: 9:58

Your grandparents, yeah, they didn't talk lady part cancer, you know. You just don't talk about those things. Like you don't talk about nipples, you don't talk about your vagina you don't talk about. You know what I mean. So I'm really, really focused on saving the world in a way that we can talk about it and we can sit in the nail salon and talk about, you know, our breasts and our you know things like that. So I just am so glad that you brought that up, because we are the ones. We are the ones who are changing that trajectory of of how we communicate with our own families. So, like your kids, you know, are going to know that I have outlined everything Totally.

Speaker 2: 10:43

You will know everything.

Speaker 1: 10:45

Okay, you know, kim, my mom didn't even teach me how to put a tampon in. My mom didn't even she got me past.

Speaker 2: 10:50

My mom didn't either.

Speaker 1: 10:52

You know I mean, but no, it's like we teach our kids how to put a tampon in right and so, um, yeah, it's just really interesting. So I want to get into. You found out about your breast cancer in such an interesting way. Um, I want to. I would like you to talk about how you discovered it and why it is that you decided to. You know, go in and get tested early because you weren't even 40. And a lot of people are told they can't even get a test. You know, so can you walk?

Speaker 1: 11:24

us through that.

Speaker 2: 11:26

Um, it was totally just as your. It's the same vein as your podcast, right? I had a friend named Dana who was in her early 40s at that time, so not that much older than myself who had her routine mammogram and who was diagnosed with breast cancer. And Dana's doing fine and she's healthy today. But, um, but she sort of brought it to my attention via Facebook and Dana and I weren't, you know, friends that saw each other every day, but we did, you know, sort of have that Facebook connection and she's very much more so than anyone I've met very open with her treatment. I mean documenting pictures of her in the chemo care. You know what I mean. Like hey here, and you know, here's what I'm struggling with today. And I think she used Facebook as a very cathartic, like give me energy type of way. So because you know, once you put something out there, your friends are like you can do this. You know you've got this like.

Speaker 2: 12:22

So, I think, in seeing her posts very frequently during that time I was 39 and I had no inclination at all that I might even have breast cancer again, farthest thing from my mind. My husband and I had gone through some like rough marital things with the new, new kids and everything you know. So we were kind of past that a little bit, going to therapy and stuff. And then my kids were very young and I remember complaining to my doctor that I was really fatigued and it was like a nada, you have a one in a three-year-old and you work full-time and life is crazy. Like you should be. You are fatigued because every new mom is and I was like but this is different, like this is like a I know my body and I'm pretty like active, energetic person, like this is more than normal and she's like you know, no, your, that's it, like you're just, you know life. And so something in me just saw Dana stories and just I thought to myself you know what? I'm 39. It was early that year, so it was like February. My birthday is like September later in the year, so it was even early at 39.

Speaker 2: 13:27

I was like I'm just gonna go see if my insurance would say yes, and so luckily they did. They let me go in early. And so I just went in for a routine mammogram, like I don't even know why I did it. Dana inspired me and it's weird on the. So I was diagnosed with breast cancer on my right side.

Speaker 2: 13:47

So they found like a shadow right calcification. I have, I guess I learned I have very dense breasts. It's like seeing a polar, like a tumor is like a polar bear in a snowstorm. Right, it's all white. And so I was like oh, I don't even know what dense breast means, but like okay. So they were like there's some calcification, you have dense breast, it's probably nothing like. But just come in and we're just gonna do an ultrasound like super uninvasive. I was like okay. So you know, I put me, went on vacation.

Speaker 2: 14:19

I came back like a month later and they were like you know, it's interesting, the, the calcification part of your breast is fine, but on the opposite side of your, you know, like a clock, your breast is like a clock. So like the nine o'clock part was fine, the three o'clock they see a mass. And I'm like what do you mean? You see a mass and they're like it's probably nothing, like most biopsies are negative. You know what I mean. But let's just biopsy it, just in case. So I was like no problem, not worried about it at all. They biopsy it and I was diagnosed, surprisingly, with ductal carcinoma. I'll just maybe that I go into like what it was yes, absolutely yeah, yeah for sure.

Speaker 2: 15:06

So it was ductal and I think a lot of breast cancer is ductal and so I had ductal carcinoma and it was very ERPR positive. So everyone's breast cancer is so unique, right, it's like almost like a fingerprint. So mine was over 99% estrogen progesterone receptor positive. I ended up having to do I was borderline on the her to when they tested me so I had to do. What is additional testing for that called a fifth? So when the doctor can't really tell if you're clearly her to positive or negative, you end up getting an additional test just to like be super sure. It's called a fifth. And so I had that and I was found to be her to negative.

Speaker 2: 15:51

But when they went in after the whole thing, I mean I was shocked. I was like I'm 39, I have no history of breast cancer, I mean lady part cancer, but I don't know breast cancer in my family. My mom's never had cancer, my dad has never had prostate cancer like what is this? And so there is no genetic component that I know of for me to have gotten diagnosed so young. But they did find it was a 1.2 centimeter tumor and by the time they had done all the tests you know the Sentinel node biopsies with the lymph I had. They took out seven out of my lymph and one of them had cancer. So I did have lymphatic lymph node, like progression I guess what did they stage it at they at that time?

Speaker 1: 16:40

they stage me at 2b okay, and I think that so I was told. So mine made it past the ducks but not to the lymph nodes, and they stage me at 2 and I don't know whether it was must be 2a or something, things it's just so confusing and I I probably should have someone on here like an oncologist.

Speaker 1: 17:02

I actually did have an oncologist on here from New York. She's Tiffany, dr Tiffany Troso, andi probably should get with her again and we were in contact all the time and talk to her about what's the difference like, what makes it stage one, stage two, stage three. So you know, I want to go back to wow, I mean, they're not saved my life. Yeah, so she. It's amazing how many people you are affecting when you're talking to someone like that. She saved your life, she did made you think about it but even further than that, kim, you listened to your body.

Speaker 1: 17:48

I've always been pretty into intuitive with my body, like I, if I'm not feeling right, I'll go to the doctor, all and I'll let them know. No, this is different and yeah, you know. Just the mere fact that you told your doctor first of all I don't think she realized this, but she was kind of brushing off what you were feeling it and just, you know, chalking it up to well, you have kids, you know.

Speaker 1: 18:11

Your baby, you know and right but the but the fact of the matter is is that you knew your body well enough and you had the wherewithal to make to make a decision and advocate for yourself and go in, and that is seriously. Half the battle is advocating for yourself. So kudos to you for doing that and kudos to Dana. I love her.

Speaker 2: 18:37

I want my podcast.

Speaker 1: 18:38

I know she's awesome. I'll ask her. Okay, that would be great. So you know, you talked about what your diagnosis was. How about your treatment? What did they? What did they put you through? What is it that this put you through?

Speaker 2: 18:55

I know. So it is a very personal thing, right? Everyone's diagnosis is so unique your, yours and mine, everyone listening and it does help to kind of okay okay. So I have friends that are her too, and what they go through, you know, I have no idea what it is like to have be her too positive, you know. And then I have other friends who are not ERPR positive, you know, and so everyone's treatment option based on their cancer is so different. I had no idea breast cancer was so variable in that way. It's it's so, it's, I don't know. To me it's one of the more variable cancers, like I've had friends who've had colon cancer and it's kind of cut and just high, you know, and and so it is really interesting how and it's so interesting that needed that this type of forum happens, because you know there's so many different options and it's hard to there's not one place where you go to learn all the options for everything well, yeah, and it's amazing how many people don't know about all the variables.

Speaker 1: 20:02

I didn't know either. I had people actually reaching out to me and saying, jamie, what are they doing? Why don't they? They just need to get in there and cut that sucker out of there and that's not how it works, you know, depending on the type of search or the type of cancer you have.

Speaker 2: 20:17

You know, really dictates what kind of treatment after exactly that's that to me? A lump back to me, deep flap not. Do you know what I mean? Like what do you? What do you want there's? We're so blessed, though, that there are so many options. I think when my grandmother probably had cancer, unfortunately, it was like one you get one. They cut everything.

Speaker 1: 20:36

They take all your lymph nodes, right and it's like yeah, yeah and, and you're basically told what's gonna happen. I mean, it was kind of that, should they were living, yeah, and we still have this a little bit today, that patriarchal type, you know, medical system where the doctor comes in, says you have cancer, we're doing this, this, this, this and that's it, you know, and it's amazing how many times that that has happened and so, yeah, so treatments.

Speaker 2: 21:05

Yes, okay, keep me in line here. Yeah, so I, I I really waffled around mastectomy versus lumpectomy and I think it is a such a personal decision. I my tumor was small enough at 1.2 centimeters to where my doctor was like it's up to you, I I don't have a dog in this fight. Like you, pick what you want. And so I know that I've had friends who've gone through mastectomy and it's a very, a lot of surgeries. Right, it is, it's a lot. Yeah, I know you're, you're also your journey with you know your surgery. It was like, do I really? I don't know if I felt up to it at that time, so I went the lumpectomy route, which then necessitated radiation.

Speaker 2: 21:49

If you do mastectomy a lot of times, you might not need radiation, and I don't think that was fully explained to me at the time. You know, and especially just learning, I'm gonna. I'm not a doctor, so you know, when you have breast cancer, it does matter which breast it actually the tumor resides in. So if you have breast cancer in your left breast, when they radiate your breast, there's going to be some heart radiation happening. Your heart is closer, and so I encourage everyone who has any breast cancer on the left breast to really give that lumpectomy versus mastectomy decision a little bit more thought, outside of oh the you know implants and whatnot, because the radiation that they are going to require with the lumpectomy will influence and impact your heart a little bit more than me. Mine was on the right side. I'm not saying, oh, it didn't touch my heart at all, but they can angle the radiation machines a little bit better on the right side breast to avoid your heart and you do not want to radiate your heart no little pip yeah, that's interesting.

Speaker 1: 22:55

Okay, I didn't have to have radiation, luckily, knock on wood. I think this is real wood yeah with the list.

Speaker 2: 23:02

So that's a big thing. So the factor of like, oh, it's more than aesthetics, right, and it's more than surgical downtime, it's also the radiation part of it and I don't know, I don't think I quote regret my decision yet because, but you know, your radiation can rear itself many, many, many years later, and so so far, so good. But I tell the lumpectomy, I did a mammogram. So I don't know, jamie, if they did that with you, but it was like an additional denomic test determine whether or not I actually needed chemo.

Speaker 1: 23:38

No, but I have a good friend that I interviewed on this podcast who at some point we're going to be talking about that. She works in the genomic sphere and radiology and mammography and we want to talk about that. So we are planning that, but no, and that would be really interesting. I would love to know how to go about that, kim. Yeah.

Speaker 2: 24:10

So I mean, nobody wants chemo if they don't need it, right, and there's all sorts of tests that you can take to really so at that time. So this is again. Six years ago, 2017, mammoprint was like the new test. It was a it's not a genetic test, it's a genomic test. So, listeners, there's a difference and I'm not a doctor, but they really took a look in the sliver of my tumor, tested it and there you get a line and like zero to 100, and then 50 is like so essentially, no, you don't need chemo, yes, you need chemo, and you might fall anywhere in this scale between zero and 100. And so I was like, oh God, please be under 50, please be under 50. And unfortunately, I was somewhere between like a 50 and 60 mark. So my doctor was like I'm sorry, it's a yes or no test, like you need chemo because my guess my tumor genomics were more aggressive and so there's a higher likelihood of it coming back or in my bloodstream or you know what I mean something lymphatic system. So we did chemo.

Speaker 2: 25:17

I did what I think they don't really do now. I did four Adria-Myosin like episodes, so the Red Devil. I did four of those terrible, horrible, with Cytoxin, and then I also did about four rounds of Taxol afterwards. So it was hardcore, lost the hair, did all of that, and then I did radiation after, both to my lymph nodes and to my breast. And then I am doing. I did a mixture of let's see Tamoxifen and the Aromatase inhibitor, so I kind of like go back and forth and I'll talk about that my experience with the Aromatase inhibitor and Tamoxifen, which puts you in a menopause, essentially. So I started that in 2018. Until now, I'm still in menopause. I'm 46. That part really sucks being in menopause so early. I mean there's some, I don't know. I'll like silver lining this in the sense that I do not miss my period.

Speaker 1: 26:23

That's a nice silver lining. That's a nice silver lining.

Speaker 2: 26:28

Yeah, that's a big silver lining and the bloating and the this and the that, but yeah, all in all, I never really thought I would miss having a period, but I do. It's so weird, it was such an annoying thing my whole life and then I'm like I would really love to have a period, let's see. So that was. Yeah, that's kind of a recap there.

Speaker 1: 26:48

Yeah, you went through a lot and this is really a good conversation in that your cancer journey is just flat out not over once you're cancer-free.

Speaker 2: 27:04

Oh my gosh. My friends always say, oh, you're in remission, You're getting back to normal, and I'm like no, six years later. I just had a surgery to remove my ovaries last year. Do you know what I mean? I'm still on meds every day. It's not over. I heard that I'm still in menopause.

Speaker 1: 27:24

I heard that from my last surgery six weeks ago was my phase two deep flap. I learned that removing your ovaries is called an uforectomy. I had no idea. I had no idea that's what it was called. I was like, hey, can I get the rest of my stuff out? Can I have the rest of my hysterectomy? And they called it a uforectomy.

Speaker 2: 27:45

I'm like oh, you learn something new every day.

Speaker 1: 27:47

I'm 56 and I'm such a lifelong learner.

Speaker 2: 27:50

I know this is not exactly what I wanted to be learning about, but there's a lot to learn for sure.

Speaker 1: 28:00

Well, you just Just the whole mere fact that you went in and you listened to yourself and you got the testing done and you shockingly found out that you in fact had breast cancer. Did you tell your doctor that?

Speaker 2: 28:17

Oh yeah. He was the one that actually called me and she was very upset for me. Yeah, yeah.

Speaker 1: 28:26

Well, I mean, I feel like these kinds of situations really teach doctors a lie. I mean doctors, they're doctors, they know a lot and obviously, but they are not infallible and they are. I really have a lot of respect for doctors who are open to learning and understanding. Maybe this is something that I need to pay more attention to, especially when patients come in and ask me or talk to me about how they're feeling. So I'm glad that she knew and that she was understood and probably changed the trajectory of how she handles that now.

Speaker 2: 29:15

Yeah, I mean I don't know statistically if more people are being diagnosed younger, but I guess in her defense she just didn't expect a 39-year-old to have breast cancer. I have a lot of friends now that, more and more, once you have breast cancer, all your friends are like oh my God, now I had. So it's kind of a thing where you start hearing about it. But they're young. I mean, yeah, they are. So I don't know if more people are getting diagnosed, but it's, they are, they are yeah.

Speaker 1: 29:45

And there are quite. There are several podcast interviews that I've done with women who have been diagnosed in their early 30s. I'm on Instagram with some people who have been diagnosed in their late 20s. Wow, they've gone up into early 40s and so the statistics are scarily higher, fending in a bad direction.

Speaker 1: 30:16

Yeah, I mean, but I mean it's not bad for anybody, but like yeah it's a surprising direction, maybe but the part about your doctor is that, yes, in her defense, she was not expecting that, but now she knows, oh, now she knows yeah, and so, and it's because of you, at least part of because of you- and so yeah. Yeah, so your life now? You are still taking, you know, you're still in treatment and what is your life like right now? What are your side effects and things like that?

Speaker 2: 30:51

Oh my gosh, so much, okay. So I have. I just I like thought about our conversation before getting on here and stuff that I would love to have known about, or you know somebody to educate me on, before embarking on this journey, my life now. So I didn't immediately get a new pharectomy after my treatment was done. I don't know, I had entertained.

Speaker 2: 31:20

I started researching a lot about estrogen and how important it was for women or is for women, and there's a lot of new data coming out around estrogen and Alzheimer's and how important that hormone is for us to actually have brain health and cognitive like, like improvements and all these things right. So I actually used to be like, oh, my estrogen is so annoying it's like when I'm like hormonal and you know, fight with my husband. But I didn't realize just like, oh, I really miss it and how much it's needed. So I didn't jump into doing the ufrectomy immediately. I was on Lupron, which was a shot in your fat or your stomach every 28 days to keep you from having your period. So I did that for about five years. Every month I would go into the doctor and get the shot in my stomach it was not pleasant or in my buttocks to keep that at bay. And that was financially kind of difficult as well, because then I would always max out on my medical premium, right? So it's like those shots are not food. I'm having to do them 12 times a year and like taking time out of my months to go in to get a shot in this whole thing. So and I think part of me was doing that because I had this like thought that eventually, at 50 or at 48, I'm going to stop this and maybe I'll get some more estrogen and I'll be okay again, you know, in the sense that it'll come back and then it'll ward off any Alzheimer's or anything. You know what I mean. Like anything else I have to worry about, I don't know, I'm so obsessed with Alzheimer's, I'm so obsessed with it. And then I think I talked to my oncologist. He's like you know, I don't actually want you to have a system ever. He's like I'm probably going to end up keeping you on these endocrine therapies until you're in menopause, and once you're in menopause you don't have it. So like you might want to consider getting an ufrectomy and a hysterectomy sooner than later so you don't have to max out on your insurance. Every. You know all the things.

Speaker 2: 33:24

So I'd like gone back and forth with this and I think a year ago I was like God, I am really sick of getting shots in my stomach. They are not pleasant, and so I just went in to a doctor here in Reno and did it. So we did the uferectomy and I decided to take the uterus out as well for the hysterectomy, because I just thought it's another organ that might get cancer later on. So like there's no damage, there's no. She's like your pelvic floor looks good. Sometimes you might need it for stability. You know to hold things in, but she's like. I don't think there's no reason why you should leave it in. If you want to take it out, you can take it out. That was optional, and I chose to get the hysterectomy too because I was like you know, that's the last thing I needed to have 10 years from now. Uterine scaric.

Speaker 1: 34:10

Right.

Speaker 2: 34:11

I was like just get it out, so we did that. I do have some knowledge and just personal thoughts around some people. You're given so many choices, right. So when you're ERP, are positive, you're going to be in menopause. You can choose to do the tamoxifen route, which I think blocks the receptor for estrogen, so you're, and then you have the, but you don't need to have these leupron shots every month. I don't know, jamie, is yours ERP or positive, but you're diagnosed later, so it's not a factor.

Speaker 1: 34:46

I was her two positive, estrogen and progesterone, negative. Oh, okay.

Speaker 2: 34:51

So you're, this is not a world that you're like you know, okay? No?

Speaker 1: 34:55

but this, I, this is so fascinating to me.

Speaker 2: 34:59

Yeah, because I don't know much about her too, because you know it's like so different. So there are. So there's two, right? So there's the, there's the tamoxifen and then the aromatase inhibitor, which is like anastrasol, and if you want to take anastrasol, there's actually a higher. I'm not going to say the percentage because, again, I'm not a doctor and the clinical trials not coming to my mind, but more oncologists now are recommending the leupron, which is a brand name. So I don't know the medicine name, but it's a leupron with aromatase inhibitor option because it's known to actually have like 5% more survival rate. You know what I mean. The survival rate for that drug is a little bit higher than tamoxifen, but I mean it.

Speaker 2: 35:43

The degradation on your bones and the osteoporosis risk and all the things that come with menopause is so much greater with this anastrasol one. Because you, you literally I don't know tamoxifen to me. I've done both and I am doing both and I'll explain that a little bit why. But tamoxifen, like you still feel like yourself, a little bit to me, when you're on anastrasol, leupron, like you feel like you're dried up, like there's nothing to screw you, like your, your joints hurt like this.

Speaker 2: 36:13

So I did tamoxifen for one year and they wanted to put me on endocrine for 10 years because I was so young when I was diagnosed. They do not want me to have periods like ever. So that means most people hit menopause probably in their 45 to 50s. So that means I'm going to be on this until probably 50 and then they'll take me off and see what happens. But the clinical trials for anastrasol, leupron really kind of look at that five year survival rate. But they have found the benefits of staying on that regime medically for five years. Okay. So like suffer through leupron and anastrasol, that dry feeling, that degradation in your bone density for five years and I had feet. So I went on tamoxifen for a year, switched to anastrasol for five years and I had noticed that my bone density was declining rapidly.

Speaker 2: 37:08

So I was totally healthy bone density. I work out a lot. I have always done weight since in my 20s and I was like almost to the point of osteoporosis last year. And she was like, okay, but you're not an osteoporosis yet. So you're good. And I'm like, but there's a drastic decline every two years when you're doing my density test, like it has dropped a lot. And she was like but you're not an osteoporosis, so you're good. And I'm like, but I'm going to be an osteoporosis in two years when you test again. Aren't you like I can see this trajectory? And she was like wow, you're not yet. So I think you're going to be okay.

Speaker 2: 37:48

And I had asked her. You know and this is again, this is not a dig on my doctor, it's just the way that doctors think, right. And I said what if I switch to tamoxifen now? I've done my five years of anastrasol, right, this is the clinical trial benchmark minimum. You need to do five years in order to get better survival rates. She was like yes, that's true, you've done your five years. And I said tamoxifen has proven better osteoporosis outcomes than the alternative. I've removed my ovaries, right. Like, can I do this? And she was like you know what you're right, let's put you on tamoxifen. So I went on tamoxifen again last year or beginning of this year so kind of the end of last year but and tamoxifen could hopefully stop my bone density loss. So I think in your journey, even six years out, right, jamie, like you just have to keep advocating for yourself and when they're like, oh, but you're not an osteoporosis yet, you're like I'm getting there. This is not okay. I'm 46. I shouldn't have osteoporosis.

Speaker 1: 38:54

Right, right, you know I will say that I think that there are some doctors who are not necessarily used to or I don't open to I don't know what the right term is but people who actually advocate for themselves and question them. And I've had that a couple of circumstances that that happened with me too, where I would, I think it kind of like usually there You're going up to that 15 minute bubble that they give you.

Speaker 1: 39:26

Yeah exactly, exactly. That's really interesting. So good for you for advocating and thank you for saying to the audience that, hey, six years out and really you're in the whole entire life, you need to advocate for yourself. You need to know what's going on with your body and you need to remember those things and because, in the end, you're the one who is going to be taking care of your body and I mean, the doctors are there, but you've got to have the questions, you've got to have the knowledge, you've got to have the girl parts to question.

Speaker 2: 40:04

Yeah, I mean I'm not to go into it to private information as well. There has been another benefit to assisting the medicines that I was on not to get to personal. But I was suffering from a lot of vaginal dryness with the anastasol Because, again, like I said, it is like the nuclear option for menopause. It takes everything and I mean I had a lot of hip pain and you just feel very dry and like, oh my gosh, so my hair, you know what I mean A lot of hair loss, kind of stuff happening. And then when I switched I will say, just for those that are considering, like monoliceous touch or other things that you know affect your vaginal dryness area One thing for me is I noticed that the moment I went back to tamoxifen it was like night and day. I no longer it's not painful to have intercourse, you know what I mean. It is like so much better. It was, you know, for five years.

Speaker 2: 41:15

It was very painful and very it was like a very hard thing for our marriage. You know what I mean.

Speaker 2: 41:21

It was just a lot. So I do think it's worth for your listeners to understand too that the two medicines can. You can take them in different parts of your treatment. Talk to your doctor. But like it has helped me in that area, as well as the I hope, the bone loss area. I don't know yet I'm still going to go and do my bone density testing, but from all the things I've read online about tamoxifen versus anastasol, tamoxifen is actually it can build bone marrow or bone density.

Speaker 2: 41:51

Oh, okay, so I don't know, it's just between the two, you're not locked in one forever.

Speaker 1: 41:57

Okay, good to know, I never knew that.

Speaker 1: 42:00

You know, I, looking back, before I found out I had breast cancer. I mean I had it when I went in in this part that I'm going to tell you right now. It was probably about a month beforehand. My husband and I were, you know, having some sex and it hurts so bad I had. I was shocked, like it took, it knocked the wind out of me. That's how bad it hurt, yeah, and I couldn't believe it. And my husband was just like, oh my gosh, you know, and after I went through all of the chemo and all of the things, I went to a new doctor here in town and she was amazing and she actually told me that I think that when you have breast cancer, I think that that kind of thing happens anyway, but she had told me that you know, when it does push you into menopause, your vagina shrinks and I never knew that your vagina shrinks at shrinks this way and this way.

Speaker 1: 43:01

And yeah, and so she put me on God. What is it? Uvifem, I think it is, and then there's a company to.

Speaker 2: 43:08

But since I PRP are positive, I shouldn't take it. Am I doctor Right? Sort of like you can take it, but maybe I've decided not to. But yeah, does it help.

Speaker 1: 43:16

Oh my gosh, yes, I am. Yes, it does, if you actually remember to put it in there. Yeah, and but also there's a company called Bonafide and they have things that help out with vaginal dryness and things like that. And so I remember, after I had taken it for a while and you know you insert them every night or every other night alternate I remember when my husband and I were like, okay, let's try it. And we did, and it didn't hurt. I was like, oh my God, thank.

Speaker 2: 43:49

God Wow.

Speaker 1: 43:49

Because I was. It is a big deal it is.

Speaker 2: 43:53

It's something that you don't really like to talk about my you know, relationship, but it was like night and day and the pain, right, it was very painful, like I mean, yeah, it impacted our mirror. I mean I didn't know it would affect.

Speaker 1: 44:09

It hurt. I do want to ask you know and if you're, I'm just curious and you don't have to go into detail how was your husband as a caregiver? Was he your caregiver, like primary caregiver, yeah, and how was?

Speaker 2: 44:21

he. I am a very type A person so I wouldn't consider him like a caregiver in my sense. Not to like that is not a ding on him at all, but I'm just like a I don't know. He he's a very supportive spouse in that way and I think I mentioned earlier on that we we had gone through some marital stuff the year before I was diagnosed. So it was great that. I mean, it was terrible when it was happening because we had to. You know, we almost split up and we went through therapy and that whole thing. But in actuality that year of tribulation between he and I like made my cancer journey. We were stronger in that way and so we had laid a foundation for our marriage to not be affected by the cancer and I've heard a lot of people talk about it broke my marriage and it really, you know, it was really hard for us to remain connected and all these things. So my husband and I were were still very close in that way, but I wouldn't have called him I don't know, I don't I wouldn't have called him my caregiver. He was my emotional peer leader, 100%, but I was still taking care of my one and three year old, like I'm a mom, you know what I mean Like I had a one and three year old and I actually still work whether people think that's silly or not, but for me I still work while going through treatment.

Speaker 2: 45:44

So I didn't actually stop working and for me that kept my mind off of the treatment. I worked, probably from you know, nine to like one or two in the afternoon every day. So it wasn't like until five or six. You know I didn't work nights, I didn't work weekends, you know the usual stuff. But I had a very understanding company and manager who was like you want to work during chemo? Amazing, like you do what you want to do. So I I tried to keep my life as normal and you know what I mean as it used to be.

Speaker 2: 46:20

So I didn't have gaps of me sitting there just thinking about cancer, you know, because my kids were needing me, I, you know. So I I don't think I necessarily had a caregiver in that way, and also I did a lumpectomy, so it wasn't a very invasive surgery, right.

Speaker 1: 46:37

So yeah, Except for your leader. Yeah, except for you did go through some crazy treatments. So even though you had a lumpback to me, it still affected you in a lot of different ways.

Speaker 2: 46:50

Chemo was difficult, but so it's. It wasn't something that I was like, oh my gosh, I can't believe I survived it. I mean I did the full treatment, I didn't stop. Yeah, I mean, for me it was a blur. I just remember taking care of my kids.

Speaker 1: 47:05

Yeah, you know, bald and all that stuff. Well, you know, I mean in a sense, you know, and I always hate from you know, when people think or feel like they have to say you know, it's almost like well, I didn't have to do this and you know, and so you. I had it much easier than you or mine was stage one and yours was a competition right Right. It's not a competition, no matter what breast cancer is breast cancer.

Speaker 1: 47:36

It's freaking scary and you have to do things that you just never expected to have to do. And so you know, with you, I mean I I went through the treatment and I had to get shots I had to do to target the estrogen and progesterone negative piece. I had to do like proget. Now I forget See, I put it out of my mind Kim Progena and yeah.

Speaker 1: 48:03

I had to do all that for the rest of the year. But and then have and I did opt to do the complete mass that's mastectomy. I had the breast cancer in my left breast and I decided to go full on full mastectomy and reconstruction and I did my phase two, which essentially was optional, but you know, it's always nice to be able to, you know, kind of get, you know, lift, move, make them more symmetric, symmetrical.

Speaker 2: 48:30

Yeah, those things are important.

Speaker 1: 48:31

Right they are. And I'm six weeks out post-op and you look great. Well, I will tell you, if you saw pictures of me, you would never even know that my surgery was six weeks ago. The incisions are so good they are. I mean all of this, every, all the scabbing is gone and everything. And Dr Cableing at Center for Restorative Breast Surgery in New Orleans did such a phenomenal job with the first phase that if I could never have phase two, for whatever reason, I would be okay with that, because he just he did such a great job and but I'm I did go back and it was nice to see him again. I interviewed him on this podcast and he was wonderful, along with several other surgeons, and so okay, so let's talk a little bit and we wrap up our conversation. What are some of the others besides your period going away, but now you want to back? What are some other silver?

Speaker 2: 49:35

linings.

Speaker 1: 49:36

What are some other silver linings that you would say you've noticed?

Speaker 2: 49:41

Silver linings yeah, it's, it's, I would say I have a very full life and I'm very blessed in that way and I don't take it for granted, right. And so my kids are older now and I, of course, I get mad at them and I'm still like oh my gosh.

Speaker 2: 49:56

You know I can be very emotional, but all in all, like it's so cliche, but you do try not to take things for granted, right, and as I age, this is a sad note, but like I do see some of my friends also passing it, you know, and I'm like, wow, I do feel like I have to. I don't know, maybe going into a negative area here, I'm going to switch it around. The silver lining is that I become more like, in tune with my body, even more than I was, and so I think before I was like I'm fatigued but like I would go years without exercising. I would put motherhood ahead of, you know, going to the gym or you know doing something for myself, and I think my kids are older now so I have the luxury of also they can make their own food sometimes and like do some stuff that you know I've really tried to like physical exercise, Okay, so like I have more time to do it. Silver lining is that I get to do it more now and then I've prioritized it more and I think, long-term I yes, I've had breast cancer and I've had some subsequent weird scares afterwards, but we can I don't know, that's for another show some lymphoma scares and whatnot, but I don't have lymphoma that I know of.

Speaker 2: 51:16

But I realized that exercise is like the savior, it is the thing that will like lengthen longevity and increase everyone's like longevity and mobility for decades and, you know, until so it's not so much about even like living long, it's about living well and moving and all that stuff. So I think for me, I don't think I would have been so attuned to making sure that I can make these life choices or changes that would help me when I'm 60 or 70 or 80. And unless I had the breast cancer and I'm reading books and I'm looking at studies and I'm like really thinking about gosh when I'm 70, I wanna be the 70 or 80 year old that can like walk up a hill or go up a flight of stairs Like I had no, you know, I don't even think I would be thinking about that at 46 if I didn't have a health scare like this.

Speaker 2: 52:13

So I think, and I didn't realize, that things that you do today are so influential on who you are 10 years from now what you eat, what you know. So I do view my husband and I have very opposite views. He doesn't view food as medicine, but I do. Like it's like a friend, they know, and I'm like no.

Speaker 1: 52:36

I can relate 100%, 100% I'm. It's the same in this household.

Speaker 2: 52:43

Oh yeah. So he's like, oh, it's for you know, enjoyment. And I'm like, no, it's for you know it's. Medicinal Food is so important in how you feel just today. But, like next year and three years from now and five years from now, the silver lining is, I think I have a very much more. How do I make changes today to help the future? And I hope 10 years from now, you know, or more 20 years from now, I'll start seeing the benefits of that.

Speaker 1: 53:09

I feel like that's really part of your you know, kind of piece of advice, also to our audience, is that you know what you do today is very important. Exercise has been really important to me as well, and since I've had surgery I haven't been able to do much and it's driving me crazy. I've gone into yoga and everything. So it looks like my new little puppy, who is nine weeks old. She I had her in her crate and looks like she's shaking around in there looking to get out of there. We were really lucky that she was pretty quiet and can.

Speaker 1: 53:49

Let's go ahead and leave our audience with. What kind of advice would you give and really give to people and you kind of talked about this a little bit anyway to people who either have have been yet to be diagnosed or people who are have just been diagnosed and they're like overwhelmed beyond belief right now?

Speaker 2: 54:11

Yeah, I mean, for me it's know your body right. So, and don't be afraid to be that I think you and I both talked about it right that patient that takes more than 10 minutes with your doctor and comes with a list of questions. I don't think that there's anything wrong with that, because nobody is going to advocate for your body as much as you will. And so I think and I am that patient who has a binder of my diagnosis- and all of my everything printed based on like.

Speaker 2: 54:51

so I have the exact date and every time I see a new doctor I just hand them the binder and I can just flip through it. You know what I mean on. Oh, did you get this? What radiation did you have? What chemo, when you know all of that? I really think. Advocating for yourself is important.

Speaker 1: 55:08

Yeah, so people who are watching this on YouTube such a great idea. Dr Tiffany Troso also is very much an advocate for getting a binder, getting something where you can keep everything in there, keeping all your side effects in there and you know just all the things you should see. How not organized I am.

Speaker 2: 55:30

I know what happened and I know where to get the information.

Speaker 1: 55:33

Yeah, I need a binder.

Speaker 2: 55:36

No, it's helpful. And then also in my mind I'm thinking my daughter will have this right. There's not gonna be a lady part question of what did mom have? When at what age? It's like it's there, so it's like having a trust right.

Speaker 1: 55:49

It's like having you know, setting your kids up for understanding where things are for when you die, so that it's not, you know, super overwhelming and freaking out, trying to find out how to do this, how to do that. Yes, medical records.

Speaker 2: 56:04

I love that. I love that, yeah, oh my God, that's perfect yeah. So just know your body and advocate for yourself. And don't be afraid for your doctor to just be a little bit annoyed with you that you've taken a little bit more of their time after every appointment. That's actually probably a win.

Speaker 1: 56:22

I think it is a win too. I always tell people I don't care if they think I'm an asshole, Sorry yeah. I mean you know it's like I don't care if they think I'm a pain in the neck or anything, I just, you know, I get I get a bunch of tests, even to this day.

Speaker 2: 56:37

I'm like I want this cholesterol test and I want this LDL test and I want a cardiac CT or whatever it is my doctor's like okay, and then she'll just write it.

Speaker 1: 56:48

I love it. I love it, you and I. I'm so glad that we met. You know, I always call it kismet, you know, sitting there and having this conversation, and we got to meet and I got to hear your story because, you know, really, in the end, the stories are what matters and this is the way to really, you know, put the information out there to people who need to hear it over and over again.

Speaker 1: 57:13

And sometimes and it took probably Dana a little while to get you to be like, oh, it did so sometimes people have to, yeah, people have to hear it over and over again and, honestly, I put things out on social media all the time, even my personal Facebook page, every single day, and I'm sure it is annoying to certain people, but it won't be when they it happens to them. It saves their life and they'll be like oh my gosh, jamie put something out there about this. So I don't let any of that bother me. I want people to know and I really truly have a fire in my belly to you know, save the world honestly.

Speaker 2: 57:54

Well, you've created a wonderful podcast to help others. So, jamie, thank you. I really appreciate you asking me to be on it?

Speaker 1: 58:01

Yeah, absolutely. You have a very important, an important and fascinating story to tell, and maybe we can get back on and talk about other things at another time, and in the meantime, I think we need to go get our nails done again.

Speaker 2: 58:17

Yeah, the nails.

Speaker 1: 58:19

Yeah, so you let me know and I just appreciate you're being on taking your time to tell the story and to my audience. Thank you very much for joining us on this episode of Test those Breasts. We will see you next time on the next episode. Bye for now, thanks.

Speaker 2: 58:35

Jamie, it was a total pleasure.

Speaker 1: 58:38

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.