Navigating Cancer Risks, Genetic Testing and BRCA1 with Christa Nenaber

What does it take to truly pivot when life throws a curveball? In this episode we’re joined by my good friend Christa Nenaber, who opens up about her deeply personal path through a generational battle with cancer. After watching her mother and grandmother face aggressive diagnoses, Christa discovered that she carried the BRCA1 genetic mutation at 25, a marker that substantially shifted her risk of breast and ovarian cancer.

Our conversation is a raw look at the grit and grace Christa had to build a life on your own terms. We dive into the difficult emotional layers of her choice to undergo a preventative full hysterectomy and oophorectomy at just 27 years old, followed by a double mastectomy later in life, and the the complex conversations with family about future planning and the hope that her choice stops the cycle of this news for the next generation. 

Whether you are navigating a health crisis or looking for the spark to become your own best advocate, Christa’s insights on finding your voice and choosing empowerment over fear will leave you ready to take your next big step.

Resources from this episode can be found at: https://www.fuelwitherin.com/podcast/v/episode-15-navigating-cancer-risks-and-genetic-testing-with-christa-nenaber 

LETS CONNECT:

Website | https://fuelwitherin.com

Instagram | @fuel.with.erin

Youtube | @FuelwithErin

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Disclaimer: The information provided in this podcast and its show notes is for informational and educational purposes only. It is not intended as medical advice or as a substitute for the advice of a physician or other healthcare professional. Using this information does not create a doctor-patient relationship.

Do not use this information to diagnose or treat any health problem or to prescribe any medication or treatment. Always consult with a qualified healthcare professional before making changes to your diet, exercise routine, or medications, or before starting any herbal or nutritional supplements. Statements regarding dietary supplements have not been evaluated by the FDA and are not intended to diagnose, treat, cure, or prevent any disease. The use of any information provided is solely at your own risk. This disclaimer also applies to any of the guests on the podcast.

Transcript

SPEAKER_01 0:00

Our family carries the BRCA1 or BRCA1. Um, and there's different markers and a lot more have come out, but basically it's a genetic mutation on one of your genes that the BRCA gene helps prevent, and then when it's not mutated, it actually kills cancer cells in the body as they're forming. And basically, that my mom carried it, and women who don't carry a marker, and of course, you know, the your risk of breast cancer is around 13% or like one in eight women. When you carry the BRCA1 gene, it's up to like 50 to 80% chance that you'll get it. So it goes from 18% to 80%, which is like the other end. And then ovarian cancer, most women, it's around 1% chance of getting it. And when you have BRCA, it goes up to 70% chance of possibly getting ovarian cancer. So I also carry it. I found out I was positive. And so for me, I think it really shifted a lot of things in my brain. Seeing my mom go through this most of my life and seeing her go through cancer treatments and surgeries and seeing her body go through this and all of these pieces. So I think there was that level of witness it and seeing her experience. And also I think because of the bracket piece, it was like, okay, like I felt very empowered to be like, all right, well, let's like, let's live this life. Let's do the things that want bring me joy and like really allow me to have fun and work in a job or a career that brings me enrichment or that I feel that I'm making an impact.

SPEAKER_00 1:31

Hello and welcome to Find Your Fuel, the podcast where we bring you stories from women who've overcome different physical, mental, and emotional struggles and found the fuel to live their best lives. I'm your host, Erin Martin, and today we sit down with one of my good friends, Krista Nienaber, who shares her incredible journey of taking control of her health after finding out that she carried the BRCA genetic mutation, a marker that has affected her family for generations, with both her mother and grandmother experiencing cancer at young ages. She faced the heavy decision of undergoing a preventative hysterectomy and massectomy at a young age. And today we dive into how she navigated the decision, HRT, reclaimed her energy, and learned how to advocate for her own well-being. So if you're one of the many women who are impacted by breast or ovarian cancer and want to know more about the BRCA1 gene and resources for support, then this conversation is for you.

SPEAKER_01 2:35

I always think about like when I, you know, meet people or this comes up of like where do you even begin with it, you know? Um, and I guess some of it, like, especially with like giving context, I think about some of the decisions I made for my health journey and life journey. I always preface it to that like all of these decisions, or when you're finding out health information, like I really do think everybody has to do what's right for them, you know, and I think that's part of this journey too, is you're sifting through what feels right for you, but you're also getting information from friends or media or your family or a lot of people you care about that can make it, I think, really challenging. And there's a lot of different layers and emotions that have gone through this. And so I always just preface that too, and like be your own advocate, like find the teams and support, partner, doctors that feel good for you, and all of these are so important. And I also always preface too like, no matter what it is, especially when it comes to the medical world, and Aaron, I think you and I've talked about if something doesn't resonate with you, like get a second opinion, find a different physician, find a different support network. And it's not blaming the doctor or that person. I just think it's really important as humans that we know like we are the ones who are in control of that. And like, so I always want people to be empowered with that too and find those networks and reach out to someone who's going through a similar experience and ask those questions because I think that's just such an important part of whatever journey that is, whether it's, you know, I have a you know genetic defect with a cancer mutation based on it, but whatever that is, you know, maybe you're wanting to become a marathon ultra runner and that's something that excites you and you don't know where to begin. Like, find those people, you know. So sorry, that's my little diatribe.

SPEAKER_00 4:14

No, I love that. I love that so much. And especially the just seeking more opinions and also making that decision that's right for you, because I think it is really easy to get caught up in like this is what everyone's saying, but it still doesn't feel right. And it's like, well, it will never feel right if it's not your decision. So you can feel more comfortable with your decision with more knowledge and power and education, which is where more support resources, second, third opinions, I mean like fourth and fifth, unfortunately, at times comes into play. Exactly.

SPEAKER_01 4:45

Um, and so yeah, I guess how this a lot of this journey is like this is um in hindsight now, we now know that my family, this has kind of been a forever like cancer and breast cancer and ovarian cancer has been a part of my family for many, many generations. Um, my grandmother, so my mother's mother was um diagnosed with ovarian cancer when she was 36 years old. She was a mother of five kids. So this would have been in the 50s, late 50s, she would have found out about this. And she ended up passing away of ovarian cancer two years later. So my mom was 14 when she lost her mom. So that was kind of the first beginning of our like family. Oh, actually, I should correct her grandmother uh had breast cancer as well. So, like really far back. And then um, my mom was first diagnosed with breast cancer. She would been 49, um, so I was 12, and had found it was a very like aggressive form of breast cancer. It gotten into her lymph nodes. So this was during the 90s. She did a um lumpectomy first, and they also did a lymph photo where they went in and checked her lymph nodes, and I think it was six or seventy percent of sixty to seventy percent of her lymph nodes had cancer in them, which at that point they um is it really shows that the cancer is starting to travel through your body. Also, I preface that if I misspeak on some of these medical stats, I it's been a while and um also, you know, so but all to say she went through a really aggressive form like treatment of chemotherapy and radiation, and she actually beat that breast cancer. So And at that point you were in high school or middle school? I was middle, I was in sixth grade when that happened. So yeah, I was 12. And at that point, they honestly told us they were like, we don't the odds of your mom beating this is not good just because it had already gotten into her lymph node system. So as a 12-year-old, you know what I mean, like processing that. And so um, that in itself had a lot of layers. I remember being thinking, oh, I need to take care of my dad and my brother. I need to, like, this is the time for me to start helping with the house and kitchen and all, you know, all the things just like to support my mom and our family. And thankfully, um, she beat it. She is like just a little trooper and just, you know, moved through that, took care of her body, did all the things she could, and thankfully was able to beat it. Um, so then she went into what would have been considered remission at the time. I think it's after like five years of no cancer detected, they usually move you into remission. And then I would have been, um, it was after college and I was living in Vale, and I think so I was probably around 22 or 23, and um they found a different breast cancer in my mom. And so what that meant was the first breast cancer had not mutated, it was a different cancer. So, in some ways, that's a good thing because it hasn't mutated, and so it's like they they felt like treatments would be really effective with it. So she went through and had a full mastectomy at that point. She had just had the lumpectomy, and so a lumpectomy is where they just move the tissue that is cancerous, but they left the rest of her breast tissue. And so with this one, they decided to do a full mastectomy, and she did do reconstructive as well. So that's where they'll like eventually put an implant in. And during this time, you know, the I think more information was coming out in the medical world around genetic defects and that there are these markers and links that connect and can put people at higher risk. So then with this conversation, the so she started doing chemo again. And then her oncologist had, you know, basically was like, look, you know, there's cancer in your family, your mom had died of ovarian cancer, you've already gone through menopause, you've already had two kids, your kids are grown. So let's, it's probably better to do a preventative hysterectomy, hysterectomy and euphorectomy. So the removal of your ovaries, uterus, fallopian tubes. And so she went through that and they came out of the surgery and were really hopeful. They were like, we didn't see anything, there were no tumors, we're feeling really positive about this. And she ended up actually having microscopic cancer all over her reproductive tissue, tissue that they did not even like they didn't realize it was so small that they weren't able to see it during surgery. And so she went through and then also had her peritoneum removed, which is like tissue between, I think, your small intestine and your reproductive tissue, to see if that and it also spread there. So basically it had kind of just started already spreading in her abdomen. And she started doing can't like chemotherapy on the ovarian, because so she beat the second breast cancer, and then she started doing chemo three treatments on her ovarian cancer. And so she did that for about 10 years just on the ovarian cancer. So this whole journey for her was like 21 years, which is mind-blowing to me, honestly. So the chemo on the ovarian cancer, they found that it would it kind of manage the cancer but didn't cure it. So when she was on the chemotherapy, it would bring the cancer cells down. She would finish kind of like a three-month round of it, she would get off of it, and then after about three or four months, her cancer cells rose, and then they would start it all over again. And she did that for about 10 years. Once they found out about the ovarian cancer, she was also then tested for um genetic mutation, and that's what was kind of coming out, more knowledge around that. And no surprise, our family carries the BRCA1 or BRCA1. Um and there's different markers and a lot more have come out, but basically it's a genetic mutation on one of your genes that the BRCA gene helps prevent so like all of us carry this, and then when it's not mutated, it actually kills cancer cells in the body as they're forming. But our family that when you don't have it, those cancerous cells basically grow without this extra like layer of protection or basically this like little army that goes in and helps get rid of them.

SPEAKER_00 10:30

And when she got that test, was she doing it for you know, like your knowledge? Was she doing it for the whole family's knowledge? What was kind of her decision behind doing that test?

SPEAKER_01 10:40

Yeah, I think exactly that. I think it was knowledge for her and her oncology team to kind of understand the why. But then I think exactly knowing like, am I passing this on to my kids? What's going on here? I want knowledge. My dad's a retired general practitioner as well. And so I think for us, we feel really um, we're very science-based in that of like we want that knowledge to be able to make what decisions are best for us. And so I think very much for her, it was like, I want to understand the why and let my kids know. And actually, on I think I was 25. So a couple of years after she had had the breast cancer, and then we found out she had the ovarian cancer. It was actually Christmas morning. This is kind of classic, my family. And I distinctly remember it was like Christmas with just like my dad, mom, my brother, and I, and we're having this Christmas. And then all of a sudden I could sense I was like, the conversation shifted. We're we just got into serious mode, and our parents told us about this genetic marker, and basically that my mom carried it. And when you carry it, women's so most women who don't carry a marker, and of course, you know, the your risk of breast cancer is around 13% or like one in eight women. When you carry the BRCA1 gene, it's up to like 50 to 80% chance that you'll get it. So it goes from 18% to 80%, which is like the other end. And then ovarian cancer, most women, it's around 1% chance of getting it. And when you have BRCA, it goes up to 70% chance of possibly getting ovarian cancer. Yeah. So it's a big pendulum shift. And so I remember my mom telling me about this, and then they just kind of talked through like, this is what a genetic test is. It's totally up to you if you want to have it done. And for me, it just was never a question. I was like, I'm absolutely because for me, I also I was like, I want to know, I want to be able to have this knowledge to make the decision. And but also like each step of these is like everybody has to decide what's right for them because it does come with all these other pieces. So it turns out both my brother and I carry the marker. For men, it's you don't have as many, like there's still prostate cancer risks and colon cancer increase a little bit, but it a lot of it is, you know, if he he's now had two kids, and so you know, could he pass it on to them? And he has two boys, and so at some point, you know, I think they'll let them know of like do they want to, you know, be tested or not? And it's it ends up when women carry the gene, it can be passed through the father or a male carrier, but then, you know, it tends to show up more on that risk for breast and ovarian cancer for women. Um, so I also carry it. I found out I was positive. And so for me, I think um it really in hindsight. I was just actually talking about this on this hut trip with someone. I think it really um shifted a lot of things in my brain in the sense of like it felt like a lot of like this feels like, you know, knowing that seeing my mom go through this most of my life and seeing her go through cancer treatments and surgeries and seeing her body go through this and all of these pieces. So I think there was that level of witnessing it and seeing her experience and then thinking about my experience and what I wanted to do. And then it was interesting because at that same time I was working a job that I completely hated. It was like three years. I was in a design field, it was super stressful. And I remember having this very distinctive moment of like, this is not what I want my life to be. And like also, yeah, this ain't it. Like, I can't, there's gotta be other things I can do. And also, I think because of the bracket piece, it was like, okay, like I felt very empowered to be like, all right, well, let's like, let's live this life. Let's do the things that want bring me joy and like really allow me to have fun and work in a job or a career that brings me enrichment or that I feel that I'm making an impact. So very quickly, like honestly, like quit my job probably within six months, maybe or less, went and volunteered in South Africa and then like bounced around to all these things. So in hindsight, now I realized like that was actually a pretty pivotal moment for me in life of like, okay, I'm I'm switching.

SPEAKER_00 14:37

And you were 25 then with early. 25. Yeah.

SPEAKER_01 14:40

Yeah. And so all the information that I, you know, and so then I started meeting with, so I got found that out, and then I started meeting with oncologists and all these different doctors and finding out based on then based on like my family history, there was information kind of saying like, what are your different options for kind of moving forward choices? So for example, they did a lot of screening for both breast cancer and ovarian cancer. So every six months, I basically had a screening on my ovaries, and I also had a screening on my breast tissue. And so that was a form of everything from, I think I'd have a mammogram every six every year. And then on the six-month mark, I would have a color contrast MRI to detect for my breast tissue. So especially in young women, our breast tissue tends to be more dense. And that's essentially what a tumor is is more dense tissues. Typically, um, a mammogram, especially as we're older and our breast tissue isn't as dense, that that's what it's detecting. But when you're 25 and doing a mammogram and everything looks dense, they tend to use an MRI color contrast to be able to see if that tissue changes. So I was doing that, you know, respectively every six months. And then I was also doing um like uh ultrasounds for my um ovarian cancer risk and things like that. And some of the so that was 25, I started doing that. And what was interesting is through so thankfully for a while, like all of my like mammograms and MRIs on my breast tissue, everything was fine and normal. But every time I was going in for ovarian like screenings, there was just something off each time. Like one of them, I wasn't getting enough blood to an ovary, so I had to go to a specialist, and they that could have meant a tumor on my ovary. And then we like removed that. They're like, no, that's not it. And another time I had cysts all over my ovaries, and that could have been endometriotic cancer. And so there was just kind of each time there was something weird about my ovary, like ovarian screenings. And one of the tricky things about all, I mean, all cancers are not great, they're awful, but with ovarian cancer is the tissue's not very accessible, like it's deep inside our body, like breast tissue is much more accessible, skin. There's a lot of things you can get to more easily. And the I remember literally meeting with the specialist and asking him, like, what do I need to pay attention to for ovarian cancer? And he was like, To be honest, not many people get it, and we just don't know a lot about it, and it's really hard to detect. And he's like, And most people, by the time they have symptoms, which is like bloating, ramping, you know, like abdomen pain. I'm like, so my monthly period, like nostalgic symptoms. So he's like, Yeah, pretty much. And I'm like, yeah. And then he's like, those are the same symptoms. And by the time a lot of people get symptoms, it is really like it, it's um much further along than like early detection. So I was kind of like bouncing around and you know, living in all these different places, but still seeing different doctors. And within three, so it was like three years. Oh, so the part about based on my family history, they had recommended um that so treatments, there isn't like a treatment early treatment. So a lot of basically what they talk about is to really bring your risk from that like high, you know, 50 to 70 to 80% chance down to a much lower percentage is basically removal of the tissue. So having either a mastectomy, a preventative mastectomy, or having a preventative hysterectomy, upherectomy. And and beyond that, it's or just like doing these screenings and hoping you, you know, like you catch it early, is really a lot of what the processes are. And so if the choices for like recommendations were if I decided to do the preventative surgeries for a hysterectomy, so having my ovaries removed or opherectomy, they said by 32. So that was based off of they're using the information of both my mother having it, but also that my grandmother got it so early and was to have my ovaries removed by 32, and then having a mastectomy by age 40. So that was also this piece that was swirling around at like 25. And so as I was getting kind of like going through these screenings, and it for whatever reason, when I like three years into it, and maybe that was some of it, is like knowing that both that they found my mom's ovarian cancer at a very microscopic level, and it was so aggressive that she she in the end passed away from ovarian cancer. Um, and then also that my grandmother died of ovarian cancer at such a young age. There was just this kind of like internal piece of me, and then keep getting these screenings that are like, we're just not really feeling so great about this, but it's not quite cancer yet, you know. And then another, so for me, like three years of skins, I just got to a point where it's like, I can't. I that for whatever reason, I literally just like woke up one day and I was like, okay, I need this is time for me to have this surgery and have my ovaries removed. And that was a really interesting, you know, because I was 27. So I'm not, I wasn't very old. I wasn't married. And so there's all of these pieces that go along with that of like, do I want to have a family? What if I meet someone after this and we want to have a family? What if, you know, like, do I freeze my eggs? Do I not freeze my eggs? And that one was really interesting too. It internally for some not my my parents really understood and were really supportive of kind of this whole journey with me. And I feel so thankful for that and my brother. But some of my family, my aunt and uncles, really struggled with that. Like very much were calling me of like, you're giving up on a family, you're, you know, and so, which I also get, you know what I mean? Like they that's been something that's been an important journey in their life too, but also made it really challenging of like, I'm trying to make so that was kind of that beginning precipice of like, there are so many pieces that come into this. But I likened it to my aunt when I was talking to her about it. We like she literally called me a week before I decided to have when my surgery was scheduled, and her her son smoked cigarettes. And I remember I said, you know, your son smokes cigarettes and you don't want him to smoke cigarettes anymore because it could cause cancer, right? And she's like, Yeah. And I said, This is me quitting cigarettes. That's the level of it. And so, um, and for me at that point, I had decided, even though I didn't have, you know, I wasn't married and I didn't have a partner, uh, I had kind of, you know, and I thought about do I freeze my eggs and maybe later on. And I think also knowing that I could pass this gene to someone, and and my hope is 20 years from now, there's better technology, better screening, and that someone doesn't have to make any of these choices. That's my true honest hope. But I think for me, I was like, I don't want to give my daughter that news. Um so I think for me, and I also knew I in my heart that like when I met the right person, which thankfully I've met this amazing human and husband, we would figure that out together. So, like, if we wanted to have a family, we would have a family. If we wanted to have kids, we would figure that out, whether or not there are biological children. And so I'll just say, yeah, at 27, I had, and I did the full surgery. So some people will just do their ovaries removed. Um, but because also it spread from my mom to all of it, I had fallopian tubes, uterus, ovaries, and my cervix all removed. Because I was like, I don't want to come back in and do this again in 10 years. I was like, let's just be be, you know, done with it. So, which then interesting as you can think about, like that then now was like now I have no hormones in my body, you know. That was an interesting. And what was also interesting is when I was talking to doctors about this and making the decision. I remember the woman who did my surgery and she was an amazing physician in Vail. And I we were going through it and I felt really confident. And I remember the last. Like appointment I had before the surgery, and she and I went through this. She was like, you know what? If you were my daughter, I would be telling you to do the same thing. She was like, based on all of your family history and all of this information, she's like, This is pretty, pretty gnarly. And when I was bouncing around seeing all these different doctors, I remember a lot of doctors will like read your chart as they're coming in. I mean, they're very busy. I get it. Yeah. And I remember a lot of them would like be quickly reading our family history and their eyes would just get big, like, oh boy, I've got to like tell you. And I was always like, Don't worry, I know what my risk is. You don't have to retell me. But all of them were like, wow, this is a lot in your family. And so I think that felt very comforting and validating, too, of like deciding to do that. But then now I was 27 and I, you know, your ovaries are the large way that women get their hormones: testosterone, estrogen, progesterone, all these things, all our sex hormones.

SPEAKER_00 22:51

So that was what was that surgery like? And then post odd, yeah. What was that like? And getting on hormone replacement therapy and even figuring out like where to start with that, right? Or where they started you.

SPEAKER_01 23:03

So the surgery recovery is interesting too because um it's uh like microscopic, is that the right word? Yeah. So I mean, I had like three little incisions that are like half inch on my belly. Now I can't even see them anymore. The scars of, you know, I mean, they use glue to close them up. You're just like, what happened? Wild. Yeah. How did you do this? But it's, you know, it's like, and I remember she also told me that they fill your stomach up with uh, I think CO2 to inflate it. Like they put all this air in your body to make a bubble so that they can move around and and do your surgery. But then afterwards, the the gas has to go somewhere. So it like moves up to your shoulder, and then there's like it takes like a week to dissipate out of your body. So you have like you're just achy and so the surgery itself, you know, I was young, I was healthy, I'd really focused on being really physically strong going into it because I wanted my body to be able to recover as quickly as I could. So respectfully, I think doctors were like, Oh, you're doing really well. But most women are usually later, you know, in their 50s and 60s when they had this. But it's definitely kind of a like, you know, they're like, you can start walking slowly, walk a mile, or you know, but thankfully I was like able to use my arms. And so a lot of it is just like that letting your body tissue heal. So I think from a mental standpoint, because you couldn't see anything, I didn't have a cast or stitches, I had to kind of keep reminding myself, like, yeah, you're tired and you're exhausted because your body is healing, like major surgery.

SPEAKER_00 24:32

Yeah, yeah.

SPEAKER_01 24:33

You know, I've never had a baby, but I can only imagine like your whole body is going through this experience. And I'm not likening this to pregnancy at all because this is very different. But like when I think about, you know, some my friends when you've all had babies, it takes your body a long time, I imagine, to like just want to yeah, like get up and go to the yeah, like to the bathroom and go to this, you know, kitchen because you're exhausted. Your body's healing. And then in that case, too, you're also like feeding a human and all these things, you know. Yeah. But yeah, so the surgery itself, a lot of that was just like giving myself some time. So I think it was a few weeks. It's been a while, honestly. At this point, I actually was just talking to someone who's having that surgery. She had it like two weeks ago or two months ago, and we were talking through. She's like, Do you remember what it was like? And I'm like, It's been so long. Um, but she was reminding me, you just get a like a real dull ache in your abdomen. And yeah, you're just your body's exhausted from it and is really trying to heal. And then the hormone piece, when I was talking to my doctors, they, you know, we were all kind of there like, honestly, we don't have a lot of 27-year-olds who do this. So we also know we don't want you going into menopause. So let's at least keep you on estrogen and progesterone. So basically, I think I stayed on what my birth control, my role of birth control had been before my surgery. And I did that for about a year. And in that time, I had actually moved to Alaska and I was guiding in Alaska for like six months, and then I like came back and saw my family like that fall. And I just remember like all summer in Alaska, I was like, man, I am just exhausted all the time. And like, I, you know, people would want to, we'd, you know, and I mean, it was a like it physically you used your body a lot in the job, but I wasn't like, you know, going and mountaineering every day or doing these like epic a lot of times it was like you're hiking for five miles in a day and you're like carrying some stuff and taking people out. But I just remember, you know, people on our days off would be like, let's go do this cool adventure or this, and I just did not have the energy to do it. And then I even remember when I moved back to Colorado and started my job, I would like bike to work, and it was like, I don't know, four miles each way. And same thing, I was like, I cannot go work eight hours and then bike home for four miles. Like there was just my brain couldn't comprehend it. It felt overwhelming, it felt exhausting. I was having a lot of brain fog and fatigue. And I remember visiting my parents, it was probably around Thanksgiving, and I got home and I like called my mom and I was like, Mom, something feels off. Like, I something's just wrong. And she brought up, she's like, you know, my your dad and I were actually going to talk to you about it because we could tell you weren't yourself. And like, you know, I think I was probably looking back, I was depressed. I was, there was a lot of things. And my dad had done a lot of research about women who were postmenopausal and had been put on like antidepressants, and they had started doing some studies of taking them off their antidepressant and actually adding testosterone and estrogen as like a hormone replacement. And a lot of women were feeling a lot better. And so that was kind of a big aha moment for me. And so I ended up switching to I think it was called estro test at the time. And so it's basically estrogen and testosterone. And honestly, within a week, I felt like a light came back on. So it like testosterone itself. I was like, I joke about this. I'm like, no wonder all these athletes dope on it. It's like the greatest drug on the planet.

SPEAKER_00 27:50

Yeah. Brought you back to life.

SPEAKER_01 27:52

Yeah. Like my brain felt like it functioned. I could like problem solve quickly, like my muscles could recover. Like I had energy and desire to be physically active and you know, in a sex drive. And all those things that I just was kind of feeling apathetic about. I was like, oh yeah.

SPEAKER_00 28:08

You know, which is where I think oftentimes, I mean, I could be wrong on this, but it seems like oftentimes depression can come from that when you're in that constant just struggling to try to feel normal and then feeling crazy because you don't know what it is, but it's off. And so you just kind of end up in this headspace that's like foggy and messed up and just struggling. So the fact that you've your dad helped you figure that out is so amazing.

SPEAKER_01 28:33

I know. And I feel so thankful to like have that, like that's such a blessing and a privilege to have someone who was living with my mom and obviously cared and loves her to then also have the you know, the resources and the knowledge, but also like to go through all these medical studies and like that's also just like how his brain works. So yeah, I feel like so thankful that that was part of it. And so I was on Estratest for um my gosh, five years, maybe seven years? I lose track a little bit. And overall it worked really well. It was just a pill I took every single day. But then I kind of started feeling like it wasn't quite right, you know. Maybe it like this is the part I don't understand about the hormones, the pharmaceutical drugs, and all that stuff of like, does your body adapt? Does it wear out over time? Does it adjust? So that's the part I don't fully understand. But then I started seeing a um internal medicine doc who also did a lot of functional medicine and had done a whole, you know, so we started working together and he did a ton of blood panels and micronutrients and my hormones. And we ended up, I actually get now my hormones compounded for me. And so we did, so now it's basically like a cream that has progesterone, two types of estrogen, estradol and estrogen, I'd have to look at all it, but then DHEA, which is a sex hormone that helps a lot of them communicate, and testosterone and progesterone. So and it's a cream form because a lot of some of the other concerns about taking orally can be like blood clots and things like that. And so processing it through your skin.

SPEAKER_00 29:59

And compounded just means it's made specifically for you as well. Yeah.

SPEAKER_01 30:03

Exactly. Thank you. Yeah. Um, so that is um, and I've been using that now for yeah, probably seven, eight years. And that takes a lot of time too. It's like you test something out and you gotta wait three months. How do you feel? Get a blood draw, what are your levels? And then we're like, okay, well, we need to dial this part down, but keep this. And then you wait another three months and do another blood draw and test it again. And so honestly, the hormone journey, I mean, I've been doing it now for 15 years probably. I feel so thankful that I have the resources and the time and the ability to do this, but it also does take a lot of time. Like now it's interesting. A lot of our friends are in this periomenopausal time and world and are looking at HRT, which I feel thankful to that a lot of the things about kind of the negative publicity around it and concerns have been debunked. So that if that feels it feels safer to, I think, explore it, where I felt like before you had to make a decision like, do you want a great quality of life or do you want to risk you know what I mean? So I feel like it's nice that people it's a safer look at it. So if people are, but it does. And it's like every person is different and what their body. And the other thing that I didn't think ever think about is I don't know what my hormone level was when I was 27. Yes, it changes over time. Like obviously, naturally, my baseline at 27 would be different than now at 42. But I also had think I was like in hindsight, if I'd known all this, I would have like went and had a blood test before I had the surgery and been like, what was my baseline? Like, you know, it's like my annual exam. I know what my like cholesterol baseline is for like the last 20 years of my life, but I never knew what it was for hormones.

SPEAKER_00 31:36

So yeah, that's a good idea. Ditto, I've done that function health test, and I'm like, okay, the whole point of this is to get a snapshot of when I need those test results as a baseline in the future. And I'm like, why didn't I do it when I was like 30? But of course, like you're not worried, you know, maybe about that when you're 25 until something happens, and then you're like, oh, I should be thinking about this. Right.

SPEAKER_01 31:56

Exactly. But all to say, like having those hormones, you know, it has made a big difference for me. And like I feel like overall I have probably the right level of like, I feel like it can be active. I can feel like I can, you know. It is interesting because it's just a baseline. So you also don't have many shifts or changes since I I have not had a menstrual cycle since I was 27. There's some of that, you know, which is interesting. But you know, I miss a good like menstrual cry, you know what you would just like get a good, like watch some sad, sappy movies. Kind of miss that every now and then.

SPEAKER_00 32:28

You must have some pretty good nostalgia for like the olden days then of those, because I don't know if anyone else would be like, you're not missing anything. I mean, don't get me wrong, I don't mind missing the rest of it. There's so many friends who are on IUDs and they're like, Oh yeah, this is the best thing in the entire world because then you don't get a period. Right. Which actually just went off mine because I was like, I want to know like where my baseline health is and have it. And then if something's going wrong and it's impacted, I know. Like I don't want it to disappear and not understand what's happening on that front.

SPEAKER_01 33:01

So yeah, I actually did the reverse, but so yeah, hormones, I've had my hysterectomy. Okay, so then I meet my husband, we get married, it's just great, we're feeling good about our life choice, you know. So uh, we've decided to be the greatest aunt and uncles of the planet. That's our plan, or to take care of our one-eyed cat, you know, this is our our our family existence. Um, but that was, you know, when like meeting, we we were friends for about a year before we got together. And what, you know, and so he knew about my surgery and all of that. But I remember like three weeks into us actually dating, I had this moment. I think about this like if you were dating someone three weeks in you'd ask and he didn't know me, this could probably become just a bonkers question to bring up to someone. But I remember thinking, I really like this guy. So I should just let's just broach the question about kids. I'm like, I'm gonna put it out there, which everybody else would probably be like, don't do three weeks in. But I remember being like, look, I'm just gonna put it out there. I like you. And I'm not saying we have to get married, but like if you really want biological children, like if this is you know is a deal breaker for you, let's just end this relationship. Like we can be friends still, like it's like early enough on. But if three years from now you're like, you know, I've always wanted biological children and this isn't gonna work, then I'm gonna think you're an awful human being.

SPEAKER_00 34:13

Yeah. Because it's not in the cards, literally.

SPEAKER_01 34:16

It is not happening.

SPEAKER_00 34:17

Yeah.

SPEAKER_01 34:18

So that, you know, and but that also I think it was like continue to show me he was this great person for me in my life of like how he showed up in that conversation, you know, and just was very much like, hey, if we decide to have kids, we'll have a family however we want to. Um, and we can figure that out as we go along and we'll check in. And so I'll just say that has, you know, also I think it all of this has like made me almost be very real in some ways with friends or people or my my partner pretty early, like, here's the real thing, which is kind of a blessing in a way, too.

SPEAKER_00 34:47

I was like, Well, you know, yeah, and kudos to you for being strong with knowing yourself and being strong in your own decision. Cause I think at that time too, I mean, that's when so many of our girlfriend groups were getting pregnant, having kids, getting married, like right in the thick of it, when probably everyone could be looking at you and being like, Oh my gosh, you don't want kids. And you're like, Well, that's not the decision on the table. Like, I do wish I had kids and I wish I didn't have the Brecka one, like, done.

SPEAKER_01 35:14

So yeah.

SPEAKER_00 35:16

Here this is what we're doing.

SPEAKER_01 35:17

Yeah. But that is also interesting because I think when you tell people you don't have children, I've also now that I'm in my 40s, it's not as much, and probably because I've done, you know, said it enough. But uh, I think, especially early on, there's this like connotation. People are like, What's wrong with you?

SPEAKER_00 35:31

Yeah, oh my gosh. Yeah. I should also back up and preface what I just said was if someone doesn't want kids, that should also be a hundred percent fine. And there are so many people I think that judge. It's like, whoa, yeah, calm down. Right. Exactly. Again, it's back to that, like, what's right for you?

SPEAKER_01 35:47

Yes. You know what I mean? Um, so then let's see, fast forward to about three years ago, and I'd been doing all my breast screenings. So once I had my hysterectomy, I didn't have to do any more screenings on that because basically my risk of ovarian cancer was almost zero, which is wild to go from 70% to zero. Yeah. And so then I'd been doing my breast screenings every six months, everything I've been buying every single time. And I got a call about my MRI one time that they said, you know, there's two spots on your MRI, and it's not, we need you to come back in. And so my heart sank, and I kind of thought, okay, this is like because the MRI tends to be better detection than a mammogram. And I remember telling my husband, thinking, here's here's where we are. There's two spots. The odds are not leaning in our favor based on all of our knowledge. So I went in and they had to do a biopsy, which in itself is awful. Like you're awake for all of it. They have to like drill in, they like squish boob, you know, the whole thing. Thankfully, the tissue was not uh cancerous. But while I was waiting the like week that you're waiting, which is you're also like, do I really have to wait a week for pathology? Yeah, wow. So I remember talking to my husband and I was just saying to him, I said, you know, either way, I'm gonna have this surgery. I'm gonna have a mastectomy if it's preventative or if it is, you know, like if it is cancerous tissue, I know that that's what the doctors are gonna recommend as part of the treatment.

SPEAKER_00 37:13

So did that MRI result trigger that decision, or had you always thought I'm going to get a mastectomy at some point, just don't know when?

SPEAKER_01 37:21

Yeah. I think I always knew I was going to do the mastectomy. I just didn't know when. You know, they had said 40, um, I think I was 38 when I found out. And or when that MRI result happened. And so I knew I was going to do it. I think I just kept being like, my scans are great. So or it had been clean. So, you know, I just kind of kept pushing it. And I knew it was a much more physically um demanding, or I don't know if that's the right word I'm looking for, but like yeah, it's a much surgery, larger recovery surgery than the hysterectomy and euphorectomy. And so I ended up um, thankfully, those, yeah, they were benign. It did not have cancer in it. But then I decided that, you know, during that week, I told Ethan, I was like, look, I'm I'm we're doing it. Either way, we're going. And he was, he's always been very supportive of all of it, of like whatever's right for you, and I'm here. And so I think I interviewed six or seven plastic surgeons. I had time that gave me the ability to have a little bit of time because I was doing it preventatively and not, you know, like trying. Um, but I've also had friends in Denver who I've already, there's a there used to be a group called Bright Pink that connected women who were high-risk ovarian and breast cancer and brachus. So a lot of us, I've been in touch with a lot of these people for over a decade that had already done that surgery preventatively, some who did it when they found out they had cancer. So I'd already gotten a pulse on some of the surgeons and and had a uh breast surgeon in town. And I'd had a friend who who I'd worked with who actually she happened to just get breast cancer. She had no family history, no genetic, you know, shin markers, but she was like 34, I think, when she or 32 when she got breast cancer when we were working together. So she'd had a surgeon. Anyway, I interviewed a ton of surgeons and found a plastic surgeon. I so because I decided to do both the mastectomy and the reconstructive surgery. So the mastectomy is just the removal of the breast tissue, and then the reconstruction is to have uh implants, but there's also different others. Like some people are able to do reconstruction with their own like body fat and things like that, depending. I was not a candidate for that, but yeah, so I went through that whole process. So found my surgeons, and you have two surgeons. You've got your breast surgeon who does the mastectomy, and then the plastic surgeon that comes in. And I remember all these people telling me, like, make sure you really like your plastic surgeon. I'm like, Why? Why doesn't they're like, Because you spend a lot of time with this person. You do, you're in there every week hanging out with them. So I had that October of 2021. So how's it been that long already? Um, it has been over three years. I did the first and how my process was, and some people are candidates to go straight to implants, which I also was not a candidate for. I apparently have thin skin and all sorts of things. So um basically I had the mastectomy, and then they put in what was called an expander, and it's the best way to explain it is like a hard piece of plastic tupleware that inflates over time. That's what it feels like. Um, and they put that underneath your skin, and then over time, like every week, I would go in and they would literally inject saline into it, and it slowly inflates to get to the size that they want to someday then put the implant in. So it's like making they call it the perfect pocket. It's like making a little like pocket for your implant to go into someday.

SPEAKER_00 40:31

So they put that in the same surgery that you do they do the massectomy. So it's like massectomy, that thing goes in.

SPEAKER_01 40:37

That was my process. I have heard where sometimes, like, if they get in there and something, you know, there's all because you are doing it's such a is it's they're removing so much tissue that sometimes maybe something happens in the surgery. So they do preface a lot of things like here's how it we hope it will go. And then so I've heard where some women get in there and they're not able to put that expander in and they have to go back later on and you know and have it put in later. So they were able to put the expander in right after the surgery or in that same surgery. So they had that remove the tissue, put the expander in, and then you go home for like, you know, and wait for three months and do all this stuff. Um, and it that that mastectomy is um is pretty intense. It's a I like really think a lot about people who are also like going through chemo treatments with this and like all of those pieces, you know, and everybody's body reacts differently, things like that. But it's like you also have drains that are coming out of the side of your body. So you have to like clean the drains. And I remember people telling me like the drains are awful. I'm like, how can it be that big of a deal? And I remember like seven days in, I was like, because they're like right under your armpit and you're like bumping them, and it's literally just this plastic tube that's wiggling against your skin, and you know, it's like it's just uncomfortable, you know, and you're just like this is and my doctor wrapped me in like saran wrap plastic because they want to hold as your body's something to hold you. I also did nipple sparing, so there's different when you have a preventative surgery. Oftentimes you can um decide to keep your nipples or not. And um, so I had nipple sparing for mine. Sometimes for if you have cancer, depending where it is, they're not always able to do that. And so so I technically still have my nipples. They look very different in the sense that they just look flattened out compared to what they used to. So, and then then you have what they call T-Rex arms. So for four weeks, you just can't raise your arms, can't raise your arms. They're just like, this is your world. And so that was challenging. You know, you're like, you can't cook, you can't do all like all the things you just want to help yourself and do. I remember the first week for me was really challenging to go for walks. Like it just hurt a lot. Like the tissue was so raw and to have these like expanders and like any movement. And I remember that feeling pretty like deflating, no pun intended, because I just was like, I can't walk four houses away, much less, you know, before I was able to be active. I remember I went to maybe 10 days in or two weeks in, I went to a oncol, um, like an oncologist, like physical therapist. And my mission was to get the back of my hand onto my forehead, and it was like 12 inches away from me. And I remember thinking, I can't get my hand onto my forehead right now just because I had been doing this and you're like protecting your body for so long. And then, so yeah, so I went in kind of every week. They inflated the expanders. I think two or three weeks in, like two weeks in, I was able to get the drains removed, which was like the greatest feeling ever. Um, and starting to bathe myself and starting to like, you know, in a few like three weeks in, I think I was able to drive. And then, and it was great. I even skied a few times, you know, in between my surgeries. It was like a couple months in just as simple. I was like, I just gotta get outside and move my body a little bit. And then about three months later, I had my ex what they call the exchange surgery. So where they take the um expander out and put the implant in. And you have similar restrictions, but the and it was uncomfortable, but it was not to the level of like, um, they they said they're like your pain is gonna go down much faster because it's just not as a uh like. um invasive at that point comparatively. So they were like, you have to just be honest about not using your arms because it's not going to hurt as much. Because when you're in pain, you're like, oh, I'm not going to do it because it it sores. Yeah. And thankfully both of them like went really well and really smoothly. Then like, you know, probably like three months after my last surgery, I really was like, okay, I want to like, I honestly did my I never was a runner. And I remember getting, I got connected with this great gal in Boulder. She also carries the Bracka1 gene and has done both surgeries preventatively, but she is a trainer and a coach and like a running coach. And so I got connected with her and did my first half marathon. Like I've never been a runner in that way. And so just because I think I was like, I want to be able I like wanted someone to help me get strong again and to be active again. So it's actually been really fun to like be stronger than I probably was before my surgery and be more physically fit than I was before my surgery and meet, you know, these amazing people and kind of just be like wow I I can do this. You know, like the body is this amazingly resilient thing. You know, you got to take care of it. But there's also like it's pretty amazing to think about like what it went through and all these things that people's bodies go through and here we are.

SPEAKER_00 45:11

So which is definitely saying something too if you're stronger and more fit than ever because you are very active you're skiing, hiking, biking, you're all the things and I remember you were one of the first ones of our girl group to really get into lifting weights. And I remember when you were showing me your training plan, it was so long ago it was whenever we went to Mexico I remember thinking like oh I need to do this more. Like I should have just ripped and used your training plan because then it just fell off I fell off the wagon and now I'm getting back into it. But you were the first one who were going was going hard into lifting weights, being strong, all the things.

SPEAKER_01 45:49

Yeah. And spoiler lifting weights is like the best thing women can do especially you know we're in our 40s now and retain that muscle mass. Yeah exactly it helps for so many things and your metabolism and muscle mass and your joints and yeah.

SPEAKER_00 46:03

And so is there any post op stuff you have to do now for either of the surgeries and manage it or is it just making sure the HRT's dialed like what does it look like today?

SPEAKER_01 46:13

So I would say post-op for me everything's healed which feels good. And a lot of it is like I I still get some tightness in my like pec muscle. So as far as my like hysterectomy all that stuff like there's nothing I've got to do there except for the HRT. So I really have to focus on and I and for whatever reason too probably just because during the mastectomy if I am not lifting and exercising I quickly lose pec muscle strength and upper body strength. So it's something that like I'll notice like oh gosh I had a hard time opening a door or something weird and I'm like oh okay like make sure you're getting back on that. And then I also just have to make sure I'm doing a lot of like stretching and opening like chest opening stuff to make sure because otherwise like you know it's like then I this whole thing closes up and then I get neck pain and you know you know how it all like it all links up together. So that's something that's really I have to be really consistent about technically I could do another surgery. So like I mean it it does look very different. Like my implants look very different than not very that feels probably dramatic but to me it feels very different. And honestly it took a couple of years probably at year two I was like okay these are kind of mine but before that it felt very foreign looking in the mirror felt really odd. That took me a while psychologically to be comfortable in my own skin and even in front of my husband at times I was like this doesn't feel like me and I don't I don't feel sexy or desirable like you know because this feels so different than what it did before which I think is a journey through a lot of different things that women go through in life, you know, as a part of it. And so you know like my doctor's like we could do a second surgery or third surgery and it's basically like it's called a fat transfer where they basically do liposuction and then like fill in because I have rippling which is basically where like you can see essentially ripples in my skin like if I was standing you know without any clothes on um because the implant you know has a different texture than like what our our natural body fat would.

SPEAKER_00 48:11

Yeah.

SPEAKER_01 48:11

I've just been like whatever I don't I don't want to take time off again. I would rather just be active and play. It's okay. Yeah. Yeah. My husband doesn't care. So it's like whatever. We'll just but and maybe in five years I changed my mind. Maybe I'm like yeah let's do it. But so overall now like there's really just mostly maintaining my own strength and fitness is really kind of the thing.

SPEAKER_00 48:33

Yeah. And one thing I absolutely love about you is you are just so positive. You have tons of energy and are just a kind and amazing human. So I'm also wondering how do you just mentally stay positive and how'd you get through that process which you've definitely alluded to just the hard journey of going through so many things for so long, which it also looks like you're dealing with with your mom watching her do the same thing and then you have to fight almost you know a different battle but similar in that way. So sorry I'm getting teary thinking of your mom, but like how'd you stay so positive through that?

SPEAKER_01 49:07

I think um that is a great question Erin I think um and thank you that's like such a wonderful compliment. You know my mom was such an example in the sense of she was very real you know and I think was really honest with us when she was in pain or uncomfortable or something was happening. And I remember her even saying this that she did not want cancer to find who she was you know and so I think there were and I think she also did a good job of allowing herself like, you know, when I need to literally just nap and and take my space I'm going to do that. And I don't need to say that this isn't hard or that there aren't hard things but I think she also was able to really reflect and and think about like and you know especially when she was doing treatments I think she was able to say like especially between her ovarian cancer I remember she would um when she was feeling good and she wasn't on treatments she was like I'm going to go on a trip. I'm going to spend this time with my family I'm going to do this thing and make memories and live my life because I am alive still and this is something. And it doesn't diminish that I know that there was a lot of internal emotional things and pain that she also would talk about and go through. But I think she she wanted to also be able to really embrace and enjoy. And so I think for me some of that was watching her and being like okay if like we are going to we can get through hard things together and there is hard pieces of that. So I think it's like a combo of one, I had a really great therapist. I'm a big believer of having someone who has helped me sift through and process seeing my mom go through this but then go through this myself. Because it doesn't mean that there haven't been moments where I haven't been you know like 100%. You know what I mean? Because I want that to also not be like oh everything's perfect and you just push through because that's also I don't think necessarily the best thing. Yeah. I think going back to the beginning is like also having your people, you know what I mean? And whoever that is like and I and I don't think it's just one person. I can't can't expect my husband to be all the things I need emotionally for me. You know like it's I've also had people like you and these amazing women in my life whether they've been through it or not I found those network of women who had these had these surgeries. So I also believe it's really important to have those people that you can talk to and say today's really hard you know and this is and be able to like have it. But then I think I also try to really think about like I also feel very thankful and have gratitude of I was able to make this decision. I feel very privileged to be able to make this decision not only from like where I live in the world but also like financially to support myself or you know to be able to like get strong all of those things and because I think some people people some people don't get to make this they or have this information. So I feel very privileged but also like have gratitude like I similar to my mom is like I really want to there's really cool stuff to do in this world and I want to travel and I want to meet more people and I want to spend time with people like you and you know like I want to go on that girl's trip every year when we get together because that's the stuff that fills my soul. So I think there's some of that too of like being able to acknowledge it but also be like okay you know like there's also gratitude in kind of everything that's happening you know yes I love that.

SPEAKER_00 52:09

And since you've done so much research it sounds like you're just so knowledgeable on all the stuff. If anyone had a history of breast cancer or variant cancer, what resources are out there that you would recommend that they check out or support groups they're a part of or any of that kind of stuff for someone who has a similar journey they're going through.

SPEAKER_01 52:28

I mean I one of the things that is really amazing about the social media world that we have now is that is so it's so much easier to get in touch with people now than when I was even 25, you know what I mean? And so while like bright pink doesn't exist anymore as a group, you could go on kind of any platform and put in BRACO one positive, you know, like you put in the hashtag if people still hashtag but BRCA1 or any of those things are high risk and all of a sudden there's so many people who share their journeys and everything I have found is women are so open to talk about this and support each other, which is so freaking cool. You know what I mean? Share their journeys and their experiences and who their doctors are and so like one please anyone can reach out to me. I always feel very comfortable be like this is who my trainer was this is who this person is this is who my doctor was or like these were the pants that I wore for surgery that were amazing. You know what I mean? Like things like I would have thought you could wear yoga pants and someone was like don't get yoga pants after a mastectomy I was like brilliant. You know what I mean? They're like it's too hard to pull them up and I was like oh okay so things like that is where I feel really thankful about like the networks and social media. And so and just like a lot of there's like a lot of really good research you know Colorado University of Colorado has really great research and doctors and so does Rose Medical and just all over especially in Colorado there's just a really good network. But honestly social media for finding that personal connection is such a great way to ask people questions and then you can like really connect and build.

SPEAKER_00 53:52

Yeah I love that and if people did want to connect with you where's a good spot for them to find you you can I'm not on social media as often anymore. So that's not the best way. It's not a bad thing. Sorry it's a good thing.

SPEAKER_01 54:05

You could message me on Instagram which is C knee neighbor spelled phonetically K-N-E-E-N-E-I-G-H-B-O-R or you can send me an email which is just my first dot last name at gmail.com that's works too.

SPEAKER_00 54:20

I love it. Well Krista thank you so much for coming on. There's so many women I know who will value this conversation and be able to learn from you. So thanks so much for being vulnerable and opening up about it. Well thank you for having me Erin I love this this is such an amazing podcast you've created.

SPEAKER_01 54:36

So thank you.

SPEAKER_00 54:37

Thanks for listening to another episode of Find Your Fuel. I'd love to hear your thoughts on how this story resonated with you and anything else you'd like to hear more of in the future. And if you want to support us please write a review. It's super helpful in getting new people to discover the show and help other women find the fuel to live their best lives