[00:00:00] Adam Walker: From Susan G. Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
[00:00:14] Learning about your breast cancer risk can empower you to make important breast care decisions to take charge of your health. If you are at higher risk of breast cancer, talk with your doctor about a screening plan that’s best for you. You may need to be screened earlier and more often than other women. If genetic test results show that you have an inherited gene mutation, you may also consider risk-lowering options, such as risk-lowering drugs, prophylactic surgeries, or clinical trials. Today’s guest has an extensive family history of both breast and ovarian cancers and tested positive for a BRCA1 mutation at a young age. Here today to tell us her story and how she’s worked with her doctors to create a screening schedule to keep a close eye on things while allowing her to fulfill her life dreams is Amy Hunter. Amy, welcome to the show!
[00:01:01] Amy Hunter: Thanks so much for having me, Adam. I’m happy to be here.
[00:01:04] Adam Walker: Well, I’m happy to have you and this is such an important conversation. And so I really appreciate you kind of bringing this perspective to the show. So, Amy, I understand you have a significant history of cancer in your family. Why don’t we start there with you filling in our listeners on how cancer has been a part of your life.
[00:01:22] Amy Hunter: Yeah, I think that’s a great place to start. And honestly, it’s something that we could take up the entire time. It’s just my family history with cancer. I’ll try to keep it brief, but it’s definitely a story and a huge part of my journey.
[00:01:36] So when I was young, my aunt got breast cancer. Kind of went through that whole process of a lumpectomy radiation, chemo. And then when I was 12, my mother was diagnosed with ovarian. That was obviously a very formative experience for me, for my siblings, it was a very big deal.
[00:01:56] We knew from the beginning that it was going to be terminal and that anything we did was just trying to keep her with us for as long as we possibly could. That experience of watching her go through cancer she survived for three years after her diagnosis, which was actually pretty significant because they didn’t expect her to live that long. But that really formed a lot of. Mentality and idea and vision of what cancer looked like and what it was like to experience it.
[00:02:24] Obviously, I think a lot of people who have cancer in the family that’s what it ends up looking like to them, but that was very formative for me. It was also very formative for. My family in particular, one of my sisters she mentions being in the hospital with my mom while she was in the middle of one of her surgeries after being diagnosed.
[00:02:44] And she went out into the hallway and there was a pamphlet about ovarian cancer there that she decided to look through. And there were a bunch of, a list of the things that could potentially mean that you have we’re at an increased risk for ovarian cancer. And my mother didn’t fit any of them. And as she was reading through it, at the very bottom of the pamphlet, there was just a little asterisk that said that there might be a genetic factor associated with ovarian cancer.
[00:03:12] And my sister said that was really significant because in that moment she felt with all certainty that there was something genetic going on and that she was going to have cancer at some point in her life. My sister, So that was a significant moment for her. My mother eventually did pass away from ovarian cancer and a few years after that, my aunt who had breast cancer discovered the BRCA1 test.
[00:03:38] And because of both her experience with breast cancer and my mother’s experience with ovarian cancer, she decided to go ahead and do the testing and tested positive for the b RCA one mutation. So then she went through the preventative surger. She was in her fifties at that point, so was finished having children and everything and wanted to be as safe as she possibly could.
[00:03:58] So in the meantime my dad actually remarried and remarried a widow whose husband had died of cancer not long after my mother died of cancer. Within a few months of them getting married, my stepsister was actually diagnosed with terminal breast. And so the first five years of my parents’ marriage was dominated by this breast cancer and fighting it and trying to battle that.
[00:04:26] At the same time, my sister also discovered a breast slump, and it was the first one that she found, but it was significant for her because she had always had in the back of her head that she was going to get cancer and that there was something genetic going on. And now we knew that my aunt had the BRCA1 mutation.
[00:04:44] And we wanted to, she wanted to figure out if there was something else going on. But in the meantime, she kind of kept it quiet because we had everything going on with my stepsister. My stepsister would fight for five years before she passed away. And throughout that time my sister wanted to have her ovaries removed eventually, because she was done having.
[00:05:05] And she just felt so, she was so certain that she had BRCA1 that she didn’t even want to do the test. She just wanted to have her ovaries removed. But her doctor said, we really should do the test. Before we do that, I want to see what’s going on. So she was tested and tested positive for it. And throughout the next few years would go through both the surgeries of having her ovaries removed and then also the bilateral mastectomy.
[00:05:29] But that was ultimately what kind of. The testing in my own immediate family was my sister testing positive. Wow. Yeah, so it was a big moment for me. I’ll be honest, that phone call was devastating for me when my sister called and said that she had tested positive I had gotten really close to my sister.
[00:05:55] She was nine years older than me. She is nine years older than. And in a lot of ways it was a mother figure for that first timeframe after my mom had passed away. And it felt devastating because again, my concept of cancer was watching my mother die from cancer and feeling that anything we did was only performative or only to give us more time.
[00:06:20] There was nothing that we could do to stop. And so not having a full understanding of what that diagnosis actually meant at the time was really hard for me to try to process and understand what that was going to mean for us as a family. But eventually, like I said, my, my sister did go through the surgeries and really was a pioneer in our family.
[00:06:44] As other side notes though, because they are an important part of my cancer journey as well. My, my stepfamily have been very private about their journeys. But I think I counted eight other occurrences of cancer within my stepfamily. And four of my five step siblings tested positive for the a t m genetic mutation.
[00:07:04] So, so that’s also been a huge part of my process and my journey as well as watching my step-family. And even though there isn’t a genetic tie, there’s certainly an emotional tie to what they’ve been experiencing and going through. And in fact, two of those, two of the times that we caught cancer instances, Were prompted by the death of my stepsister when she died from breast cancer.
[00:07:28] They weren’t exhibiting any kind of symptoms, but she passed away and within a few months they both felt strongly I need to go into the doctor and get something checked. So, so it’s all tied together and it’s all been this huge process for us. The happy thing is there are five daughters in my family and two of us are positive, but the other three are negative. So that’s been happy.
[00:07:52] Adam Walker: So, all right. So, so based on that statement, I surmise that you’ve had the testing done. How old were you when you decided to do that? How long ago was that and what did you learn from it?
[00:08:03] Amy Hunter: Yeah, so I I’m 36 now. I was 27 when I decided to have the testing done, and that was also brought about by somebody having something happen to them. So somebody close to me had a, had breast cancer diagnosis. And up to that point. I had been filled with just an incredible amount of fear associated with BRCA1 even though I had watched my sister go through it with Grace and figure it out and have this plan and take care of herself.
[00:08:37] I was so afraid of what my future would hold. I was afraid of how I would react. I honestly didn’t know how I would react to finding out that I was positive. And while I certainly would’ve loved to have been negative, I just was like, well, I just, I wouldn’t do anything about it now.
[00:08:55] I still hope to have kids, all that stuff. So I just kind of put it off. And then when someone I loved had breast cancer, It was the breaking point for me. I said, okay, this is, I’ve got to figure out what’s going on because regardless of what the answer is, I need to have a plan in place for taking care of myself.
[00:09:12] Yeah. And so once I got the test back and I was positive, it was fascinating because I was sad, I was disappointed. I think disappointed is the best word I can use for it, but I was not devastated. . And I was not overwhelmed. And I credit a lot of that to having watched my sister go through it already she had to be the pioneer of figuring it all out.
[00:09:40] What did it all mean? What did it look like? But because I had more information at that point, more than anything, it just gave me direction of, okay, so now I know and now I’m going to plan for it. And now I’m going to figure out what decisions do I want to. And how can I protect myself from dying from the same cancer that at this point had now taken either my mother or my stepsister.
[00:10:05] So then we started a screening schedule an annual mammogram, annual breast mri, and an annual transvaginal ultrasound to try to check for both breast and ovarian cancer. And That’s been what, how we’ve moved forward over the past almost decade now. Okay.
[00:10:24] Adam Walker: That’s fantastic. And you mentioned, earlier that you had plans, right? For your life, I assume, based on our previous conversation that included a family. So how did that desire for Fam for children in particular, how did that affect your decisions and your conversations with doctors?
[00:10:42] Amy Hunter: Yeah, it, I mean, it was a huge part of the conversation. I at the time, like I mentioned, I was 27. I had not met my husband yet. I did not meet my husband until I was in my thirties. And it definitely would’ve been a viable option to just move forward with the preventative surgeries at that point. I know a lot of people do. I, I know a lot of people, even in their early twenties, are just like, Nope.
[00:11:07] Like, I don’t want to deal with the stress of having to worry about this every six months because it is. It’s stressful every six months. I go in for something and every six months you wait for a couple of days to hear them say you’re clear, everything looks fine. And occasionally they’ll say, we saw something, can you come back in for another one?
[00:11:27] And they’ll look again. And then that’s stressful. And thankfully all of mine have been cleared so far. But it is stress and a lot of people don’t want to go through that. And I totally respect that and think that’s a viable. Way to deal with this and because certainly having your own children is not the only way to create a family.
[00:11:45] That’s true. And some people don’t want families, like, there’s a lot of things that go into it, but for me personally once I knew that I was BRCA1 positive, I was filled with so much calm about what I wanted and I knew I wanted to wait and see. I knew I wanted to hold out, hope that I could have my own family and my own children.
[00:12:06] And I felt really calm about that decision, especially as we kind of got the screening schedule in place and talked about this is what it’ll look like and this is how we’ll manage it, and this is how we’ll make sure that we’re staying on top of of tracking it. I felt calm and I felt like, okay, for me right now this works and this feels really good.
[00:12:26] Yeahm and as a personal side note, I actually had several men that I dated be very turned off by this revelation. They didn’t want to have to deal with whatever the future might hold for me with this mutation. And when I started dating my husband and I told him about it because I started revealing this pretty early on in my relationships.
[00:12:52] Yeah. Just after having learned how big of a deal it was to a lot of people, he paused and he responded, well, we’ll deal with that when it. And it was one of the hundreds of moments when I was like, oh, yes, I found a good one. . Yeah. That’s, and so, so that was a huge moment for me too. Like, it was, I knew I wanted to wait.
[00:13:16] I knew I wanted to try to have kids, and my husband immediately was on board with that before he was my husband. And before we. Thought about being husband and wife. And so that was really beautiful as well.
[00:13:28] Adam Walker: Well, well two thoughts there. One, I like your husband seems like a good guy. And two, sounds like you dodged some bullets there. So that’s… oh boy. So, so maybe there’s an upside.
[00:13:39] Amy Hunter: Oh boy. Yeah. That’s clearly scratching this surface.
[00:13:41] Adam Walker: All right, so then, so you chose to have the ability to make, to keep the ability to have kids. Have you thought about what your plan is when you’re done having kids?What do you think you’re going to do then?
[00:13:55] Amy Hunter: Yeah we’ve talked a lot about it actually. And, again, my husband would support me, whatever I decided to do. But thankfully what I, what my plan was, fits in very well with his. So I’m currently pregnant with my second, which is so exciting, in fact, I am two weeks away from being induced, so , he is just around the corner.
[00:14:17] Adam Walker: Okay. All right. That’s fantastic.
[00:14:20] Amy Hunter: So super exciting. We’re about to have our second little boy. And it’s been, and it’s been a dream and they have been so worth the weight and so worth the risk of holding off for me.
[00:14:32] Again, like I never. Want anybody to feel like their experience doesn’t have the same validity as mine. But I’m very grateful that I waited. Yeah. Cause they’re just everything to me. So, so that’s great. For now the plan is we’re going to hold off for a few more years. As I mentioned, I’m 36.
[00:14:52] We’re potentially thinking of trying for a third kid. Not really sure. We’re going to see how number two goes and then go from there. But we both feel really strongly that by 40 I need to start thinking about the preventative surgeries. And moving forward with that. And that’s based both on kind of our own discussions around our life and what we want, but also just from a practicality standpoint.
[00:15:16] Yeah. We want to make sure that we’re not pushing our luck too hard. I honestly I hesitate to say this because I don’t know the science behind it, but I did hear you should start really getting serious about things 10 years before the first in instance of cancer in your. And 40 is that for me?
[00:15:36] And so, that’s something that’s really important. You can tell from the discussion that we’ve already had, that gut feelings are really important to me. Like from my sister’s story, from my story, from my step-siblings and I am, I’m very religious and that definitely plays into it.
[00:15:53] But even if you don’t believe in a higher power, I think there’s something really calming and empowering about listening to your own mind and paying attention to your own feelings on subjects. And about your own body. And so for now, this is what feels good to us, is we. Hold off for a few more years, as long as my screenings look okay. And then at 40 we’re going to have the preventative surgeries.
[00:16:14] Adam Walker: Yeah. Yeah. That’s I think that, that sounds wise. And to your point about listening to your gut, that we talked so many times with so many people on this show about just listening to yourself, being your own advocate, knowing that you know yourself better than anyone else does. And because of that, even if you might not know why, You are moving in a certain direction there may be very well be a reason for it. And so, so listen to that. And don’t ignore it.
[00:16:42] So, all right. SoI do want to talk a little bit more about feelings for a minute. Let’s talk, I mean, what’s the rollercoaster, like, the rollercoaster of emotions? You carry this gene mutation. Is it scary? Is it empowering? Do you have any fears about passing it on to, to future gener generations? I mean, just talk to me about all that sort of stuff
[00:17:04] Amy Hunter: yeah, it’s everything. It’s all of the things you mentioned combined. Scary, empowering. I feel emboldened. I feel like I have purpose. I always say that we end up choosing the hills that we choose to die on, and this has become a hill for me, which is both empowering and exhausting, . It can be exhausting and frustrating, especially when I’m dealing with insurance companies.
[00:17:32] Disagree with doctors on what screenings are important and what they’re willing to pay for. It’s a lot of things for me and it has been a lot of things for me. I mentioned previously that even just having those biannual screenings, I go through this huge rollercoaster of motions every six months.
[00:17:53] Yeah. It’s a huge swell of gratitude that I live at a time when we can check for these things, and then several days of just absolute gut fear of, oh my goodness, I really hope this comes back clear. Wow. Again. And then a huge relief, a celebration of, oh, okay, I’m good for another six months.
[00:18:13] Let’s go celebrate. Let’s go get some sushi. Let’s go do something fun. So, so there’s a lot of that and I felt a lot of that same rollercoaster when I first was diagnosed 10 years ago. And it just kind of continues. The hills and the valleys are not as deep as they once were. But there is still that, that same process of fluctuation I know that passing these type of genetic mutations on is a huge topic of convers. But for me, basically we just talked about it and said, you know what? Like that is something we will cross that bridge when we get there. And for right now, it feels right.
[00:18:54] It feels okay to go ahead and move forward and have children of our own. I know a lot of people will disagree with me, and that’s okay. It’s it was not done lightly. It was not done without thought. I just could not possibly imagine my life without these perfect little boys in it.
[00:19:14] Like they’re everything to me. And so I’m grateful for it, and I hope for the best. I hope that has not been passed on. To them that we don’t know. Yeah. And we will see as they get older and I will give them all the information and then they can make their own decisions about when they choose to find out what they have.
[00:19:34] Adam Walker: Yeah. So, so then, talk to me about managing the emotions, right? There’s the crazy rollercoaster and I think you said and it was very helpful to hear like it. , the ups and downs were larger and they’ve gotten easier to manage, I think, over time. But like, do you have any strategies or any thoughts about how to ma how you manage them?
[00:19:54] Yeah, and it’s I mean, it’s similar
[00:19:57] Amy Hunter: to a lot of other things. I do, I am a worrier, , like that’s my natural state. I’m not happy if I don’t have at least something I’m worrying about. You , gotta have a constant underlying level of stress going. But there have been a lot of things that have been immeasurably helpful for me along this journey, both at the beginning and then as it’s gone on.
[00:20:20] One being I’m a person of faith. I know that’s not for everybody. But I believe deeply in a higher power. And for me, what that’s meant is not that everything is going to be okay and that nothing bad is going to. But then I’ve got somebody who’s got my back and who’s watching out for me. And just even believing in that and believing that that I have a connection with something greater than myself and a connection to the people who have passed on a connection to my mother and my stepmother and everything.
[00:20:54] That’s really big. And so, that’s been super helpful for me to, to just. Process it in that way. I am lucky. I have the most incredible partner in the entire world. He is literally my best friend. He’s the only person I never get tired of being around . And so we talk and we listen and we advise and we cry and we hope together.
[00:21:20] And that’s huge. And whatever a support system looks like, it’s going to look different for everybody. But for me, having a support system that is understanding and willing to empathize, because if you aren’t experiencing this, it’s actually sometimes a little hard to understand. You’re making a big deal out of this.
[00:21:40] Like that’s sometimes the attitude that people have is like, well, you’re making a really big deal out of. And it’s like, well, it’s because it is a big deal to me, . So it’s sometimes important. It’s important to find those people in your life who really can’t empathize with it when they’re like, I don’t I’m not experiencing that, but I can understand that would be a really big deal. Yeah. So that’s important. And then associated with that I am a believer in the power of community. Social media can be good or bad depending on how we. But I have been able to find groups on social media who have either the BRCA1, BRCA2, or similar genetic mutations, and there is power in having those conversations.
[00:22:21] Like in having that community and having people who are trying to make the same decisions I’m trying to make, trying to live and navigate the same. Web of information and insurance and doctors and differences of opinion and everything. And even when people have conversations and the topic, I’m like, oh, well I don’t really agree with that.
[00:22:44] I would probably handle that differently. I still find power in hearing that information and seeing how other people are handling it because it just makes me feel like I’m not the only person out. Trying to figure this out.
[00:22:56] Adam Walker: Yeah. Well, you were not the only person out here trying to figure this out. So that, no, that is in fact the case. That’s part of why we’re having this conversation so that we can help others trying to figure this out. So, so Amy, this has been great. I really appreciate you just giving us this sort of behind the curtain look at your life your thinking and how you’re dealing with all these things. Do you have any final advice you’d like to share with our listeners?
[00:23:20] Amy Hunter: Yeah, I think you can tell this just from what I’ve told, said already, but listen to your gut. THis is such a huge part of my story. It’s a huge part of my family’s story. The very worst thing that can happen is you’ll get information and the best thing that can happen is that everything’s okay and your gut was wrong.
[00:23:38] But listen to your gut. Ask questions about your family history so you can actually know your risks. Whatever you feel is legit, you can feel strong, like you’ll conquer anything, or you can feel absolutely terrified, like it’s the worst thing that’s ever happened to you, and that’s all valid.
[00:23:57] And the important part is to keep moving forward and keep yourself healthy. And the biggest advice, I know that this is something that gets said a lot under different contexts, but just do it scared. You don’t have to feel strong, you don’t have to feel powerful. You don’t have to feel brave, just do it scared.
[00:24:13] Go get the test anyway, even though you’re not sure you’re really want to know. In my opinion, doing it scared is even braver than doing it. When you feel really strong and empowered. And it’s information. That’s all that it is, it’s information that can help you along your. . And then the last part, and this is really important for.
[00:24:32] It’s hard, but just talk about it with people. Be open about it. Yeah. I make people so uncomfortable every time I use the words transvaginal ultrasound. That is not a happy word for people to hear, they don’t like it.
[00:24:49] But we empower each other when we talk about these things and we help. That’s right. Demystify things and help normalize, like having conversations about. Our bodies and how to protect them and how to make sure that we’re being as on top of it as we possibly can. So knowledge is power. That’s like my biggest takeaway from everything that’s happened and from this entire experience.
[00:25:15] Adam Walker: I think my two big takeaways from this conversation are just do it scared, I think. I don’t think I’ve ever heard that before. So that, I love that. That’s just kind of amazing. Maybe like life changing, kind of amazing. I don’t know… and knowledge is power. That’s all it is. Yeah. I really like both of those thoughts. Well, Amy, this has been great. Thank you. Thank you for just being here. Thank you for sharing your story and thank you for being brave enough to join us.
[00:25:39] Amy Hunter: Thank you so much for inviting me. I really appreciate it.
[00:25:46] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. For more on breast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter @AJWalker or on my blog, AdamJWalker.com.