[00:00:00] Adam Walker: From Susan G. Komen, this is Real Pink, a podcast exploring
[00:00:06] real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room
[00:00:17] When multiple loved ones are diagnosed with breast cancer within a short period of time, it can leave you wondering if and when it might become a part of your own story. Megan May knew her family history meant she was at greater risk of developing breast cancer. She prepared as best she could and underwent regular screenings.
[00:00:36] However, her diagnosis at age 40 still came as a shock, because there are some things that no one can fully prepare you for. Megan is here today to share her story, how a series of family diagnoses prompted her to begin early screening, what it was like to hear the words no one wants to hear, and the physical and emotional challenges that followed.
[00:00:57] We’ll talk about how and why giving back through fundraising has become such an important part of her mission, and how her family supports each other through it all. Megan, welcome to the show.
[00:01:08] Megan May: Thanks for having me. I’m excited to be here.
[00:01:10] Adam Walker: I’m excited to talk with you. I think this is this is important and it’s your story.
[00:01:14] So let’s start with your experience with breast cancer. It started with multiple family members being diagnosed within a short period of time. Start there and tell us what happened.
[00:01:25] Megan May: Yeah, sure. So when I was in my early 20s, my mom’s oldest sister and my grandma, my mom’s mom, were both diagnosed with cancer.
[00:01:36] So then my mom and her sisters were going in for more routine screenings because of that. Then when I was 30, my mom was diagnosed with cancer, and her younger sister was also diagnosed within six months of her diagnosis. So in a span of approximately 10 years, we had four family members, all on the same side of the family, diagnosed with breast cancer.
[00:02:01] Adam Walker: Wow.
[00:02:02] Okay, so and it sounded like there were, like, two very close together and then a gap and then two very cl- I mean, that’s just got to really hit you. And so how did that lead to your screening process or your screening schedule and what were your emotions like during that timeframe, and how did it change how you lived your life?
[00:02:20] Megan May: Yeah, absolutely. So it was really scary to have two more family members diagnosed back-to-back like that, and I was only 30, so younger than the normal screening age. But because of the family history, I was able to start screening right away. So I immediately scheduled my first mammogram after my mom’s diagnosis, and then an MRI six months later, and then that was pretty much my cycle.
[00:02:45] Every six months, mammogram, the alternate six-month MRI, and continued that cycle kind of forever. I also stopped taking birth control as soon as that happened because the cancer that my mom and my aunt had were both hormone-driven or hormone positive. So I wanted to do anything I could to decrease my risk of potentially developing breast cancer down the road.
[00:03:09] So stopping hormone treatment with birth control was one of the things I decided to do at that point. And when my mom was diagnosed, I actually lived in Phoenix, Arizona, at the time. My family is originally from Wisconsin but I had been living in Phoenix for about six years at that point.
[00:03:27] But after my mom’s diagnosis, my husband and I decided it was maybe time to pack up and move back to Wisconsin so we could be closer to family because I felt like I was constantly flying home to check on things and be here for various things. So we sold our house in Arizona, and we moved back to Wisconsin.
[00:03:45] Adam Walker: Okay. And so walk us through through your experience. I mean, so you started the screenings earlier. You went on that cycle and then you got to the point where you also received a d- a, a diagnosis. Tell us about that and what that was like and what treatments followed that.
[00:04:04] Megan May: Yeah. So I started my screenings when I was 30 with that every six-month screening schedule. When I was 33, they found a spot of something called atypical ductal hyperplasia, which is considered a pre-cancerous cell, and for most people, it would be a watch and wait. They wouldn’t actually do anything for it.
[00:04:24] But because of my family history, my care team recommended that I actually have a lumpectomy at that time to remove those pre-cancerous cells. So I did that, and then continued the every-six-month screening. And then when I turned 40, I unfortunately got that phone call that nobody wants to get informing me that I indeed had cancer.
[00:04:45] It was caught very early, as you would imagine, since I was having screening every six months, which should be a good thing. It should make treatment much easier that way. Because of the family history and the constant screenings and the biopsies and everything else, I knew immediately that I just wanted to move past all this, so I elected to have a double mastectomy with reconstruction, which, for how early my cancer was considered a pretty aggressive treatment.
[00:05:17] But my care team was on board with that because of the family history. So because of the aggressive surgery I was having, the plan initially was that it would just be surgery, and I wouldn’t need chemo or radiation or any other kind of oral medication afterwards. But pathology doesn’t always work out the way that you hoped it would, so after my surgery, when the pathology came back, they decided that I did need more treatment.
[00:05:45] Because of where the cancer was located, really far back on my chest wall, they were concerned that there were some cells that maybe they just couldn’t get to. So because of my young age and the family history, they actually at that point recommended that I do radiation for five weeks, and then also take an oral estrogen blocker for five years.
[00:06:07] So instead of just the surgery, I ended up with surgery plus five weeks of radiation plus five years of oral estrogen-blocking medication.
[00:06:18] Adam Walker: Wow. Okay. Now I want to come back to radiation because I, I n- I’ve got a question about that. But I’m I want to back up for just a moment And just ask from your own experience what was it like, h- I mean in your 20s having two family members diagnosed, and then in your 30s, two d- family m- members diagnosed, and then you’re 40, and now you’re getting diagnosed.
[00:06:40] What was the emotion like for that? Like, how did you manage that? It’s a
[00:06:43] Megan May: rollercoaster. Yeah. You go through every emotion. You are, y- mad or angry. Like, how can this keep happening to our family? You’re sad. It’s just, it’s a constant rollercoaster of emotions. One minute you feel so strong, and like you’re going to beat this, and you’re ready to conquer the world, and then then you’re sad again, and it just keeps going over and over through all of those emotions.
[00:07:10] Adam Walker: Yeah. I mean I would’ve, I would… M- I- I think what you said first, why does this keep happening to our family that’s a g- I think a pertinent question, right?
[00:07:18] Megan May: Yeah, and I mean you do everything you can to try to prevent it from a healthy lifestyle perspective, and you cut out this, you cut out that, you do this, you do that, and no matter what you do, sometimes there’s just nothing that you can do to prevent it.
[00:07:34] So then that’s where the screenings come in to help diagnose it as soon as possible.
[00:07:38] Adam Walker: That’s right. That’s why we’re, we advocate screenings a lot- Right … on this show for sure. 100%. Yeah. That’s right, yeah. All right, so so I wante- I wanted to circle back to radiation. I know you had a bad reaction.
[00:07:50] How long did that rash last? And were doctors able to do anything to counteract the side effects and make you more comfortable?
[00:07:57] Megan May: Yeah, so radiation’s kind of crazy. It’s… Mine was five days a week for five weeks, so a total of 25 treatment days.
[00:08:04] Adam Walker: Whoa.
[00:08:05] Megan May: Yeah. Okay. The treatments are fast. I mean, you’re in and out of there pretty quickly.
[00:08:09] I work full time. I worked all through radiation, so I would just leave a little early every day to go to my radiation appointment. And there’s preventative things that they tell you to do, which I did. I followed all the instructions. There’s creams and lotions that you put on to help prevent radiation burns, and all through that five weeks of treatment, everything was fine.
[00:08:29] No skin reactions. So tr- radiation ended, and I thought wow, that wasn’t so bad I’m in the clear. And then within about five days of radiation stopping, all of the sudden my skin just kept getting redder and redder, like a very bad sunburn, but to the point where it was, like, peeling.
[00:08:47] Worse than any kind of sunburn you could’ve ever imagined peeling. So had to keep going back in, seeing the radiologist and the rest of my oncology team, and they ended up having to prescribe a topical antibiotic cream that’s used for severe wounds and burns that I had to apply twice a day, and it took a few weeks for that to actually clear up.
[00:09:08] So the five weeks of radiation was easy, smooth sailing for me, but then for about a month afterwards, I was dealing with this terrible skin reaction.
[00:09:19] Adam Walker: That is no fun at all. Yeah …
[00:09:22] I’m so sorry to hear that. Now, you’re an active person. How long did the fatigue last after your treatment ended? And were you able to be active during treatment, or did you have to start over again once your treatment was complete?
[00:09:39] Megan May: Yeah. So that’s a great question. I was a runner prior to being diagnosed with cancer, so had been running for a long time and was actually signed up to run a marathon the fall that I was diagnosed with cancer. I was diagnosed in the summer. So I was understandably a little upset beyond the cancer diagnosis that it was impacting other things in my life that I enjoy doing.
[00:10:03] So one of the things I talked to my care team about right away was when can I get back to doing the things that I love to do? I don’t want this to sideline me forever. And my nurse navigator was amazing, and she assured me that while I wouldn’t be running my marathon in the fall, I would be back to running and could stay active quicker than I might have been thinking.
[00:10:25] So as soon as surgery was over, I w- started walking as much as I could right away. I mean, there were no restrictions for, from a walking perspective. It was really just no running because of the arm movement associated with it But I was able to start walking right away, and within six weeks of having my surgery, I actually was able to run a 5K the weekend that I was supposed to run a marathon.
[00:10:52] So that was a great milestone for me. I definitely shed some tears when I crossed that finish line. I was just so happy to be there and be able to finish. I mean, I wasn’t breaking any records from a time perspective, but the fact that I could still move my body like that was just amazing. But then I started radiation right after that, and radiation was harder for me to recover from than the surgery really was, and took longer.
[00:11:19] So it was probably about six weeks after radiation finished before I was able to start really being active again. But in the whole scheme of life, I mean, six weeks isn’t that long. So I was able to do all of that, and then I was actually connected through my oncology care team to a triathlon training group geared towards cancer survivors.
[00:11:43] So it’s a group that’s actually overseen by a local health system, so there’s a medical team that oversees the whole program, and they accept about 50 women every year to join this program, and you can have any kind of previous cancer diagnosis. Because breast cancer is so prevalent, a lot of the women in the program have breast cancer.
[00:12:09] But we train together over the course of 14 weeks to be able to complete a triathlon. So I was not a triathlete prior to cancer, but I am now. So yeah, so it’s pretty cool. So I’m still running all the time, but now I also bike and swim in there, too, so.
[00:12:29] Adam Walker: The triathlons te- it’s the open water swim aspect of the triathlons that absolutely terrify me personally.
[00:12:34] So that, I really admire that. That’s kind of a… And also I g- I got to say, too you running a 5K six weeks post-surgery is way more impressive than running a marathon. So that’s wow. That’s… I’m very inspired at this point. That’s amazing. Congratulations on that, really. That’s amazing.
[00:12:54] Megan May: Oh, thank you.
[00:12:54] Thank you.
[00:12:55] Adam Walker: All right, so at any point in your journey, have you undergone genetic testing? And if so walk us through that. What were those results?
[00:13:04] Megan May: Yeah, so I actually had genetic testing done right after I was diagnosed. So right away before I even had my surgery, I had genetic testing done.
[00:13:13] And I already told you about my mom and her sisters and everything. But my mom also has two brothers that are t- twin brothers that both were diagnosed with prostate cancer, and then another brother that was diagnosed with leukemia. So my mom comes from a family of eight, and six of the eight had a cancer diagnosis prior to me being diagnosed with breast cancer.
[00:13:36] So I kind of went into genetic testing assuming that I was going to get some results back to kind of explain all of that. But it was a very interesting conversation with the genetic counselor because she sat me down and said, “As much as as hard as it is for me to say this to you, of all the things we know to test today, nothing is flagging as gen- as a genetic marker for you.”
[00:13:59] So there’s nothing in our genetics that predisposes us to cancer for the things that they knew to test for then. So she did make a point of saying that obviously technology is always changing, and they’re learning new things all the time, so I can always go back down the road and be retested if I want that information for my son or other people in the family to have that information.
[00:14:25] Adam Walker: Wow. So all right, so you got that news, surprising news. I also understand that not… that after that, your sister was also unfortunately diagnosed, and so that adds another chapter to your family’s breast cancer journey. So I guess- My question to you is how do you all go about… how do you support one another?
[00:14:46] It feels like that’s a lot of cancer. You mentioned six of eight of your mother’s siblings. How do you g- how do you support one another?
[00:14:54] Megan May: Yeah. So my sister was just actually diagnosed last summer, so hers was a, a real recent diagnosis, and she lives in Boise, Idaho. Most of my family is here in Wisconsin, so when she was diagnosed, she doesn’t have all the family support actually near her.
[00:15:12] We support her from afar, but none of us are there with her. So when she was diagnosed, I decided to go out there to help her when she was having her surgery. So she was doing the every six-month screening just like I had been, so hers was also caught early. She also elected to have a double mastectomy and reconstruction just, again, to get rid of it and hopefully never have to think about it again.
[00:15:39] So I flew to Boise the day before her surgery and stayed for two weeks to help shuttle her around to all of her appointments and help with everything that she needed. Then I came back to Wisconsin for a couple weeks, and then I flew out there again once she was about five weeks post-surgery just because then she could actually hang out and go do things because right after surgery she wasn’t doing much besides laying on the couch.
[00:16:02] So you know, I mean, it… I tried to do whatever I could to be there for her actually present for her right when she needed it most, and then otherwise it’s we talk on the phone all the time and text back and forth of course. But we’re just always there for each other and H- have to be there to help support each other because it’s just, it’s so crazy.
[00:16:28] I mean, her diagnosis wasn’t necessarily a surprise given our family history, but it’s just still just makes you shake your head and say How can this keep happening?” Yeah. It’s crazy.
[00:16:40] Adam Walker: It’s wild. Now you said something you said you had to be there for her to be present for her, and it occurs to me that a, a lot of us that have not experienced a diagnosis like you have struggle with what to do or what to say or or how to behave or whatever.
[00:17:00] I- is that from your perspective? Is it just being present and being available? Is that kind of one of the keys the ways to support from your perspective?
[00:17:10] Megan May: Absolutely. And cancer’s one of those things that makes a lot of people uncomfortable. If you haven’t been around a lot of people that have cancer or if you had someone in your family and your only experience with cancer was, like, something terrible where they got very sick and had a lot of troubles everyone’s reaction and how they talk to people is a little bit different.
[00:17:34] I think being the person with cancer, you understand that and you know that nobody ever means to say the wrong thing, even if what they say perhaps wasn’t the best thing to say. But yes, just being there and being available and letting people know I’m here if you need to talk,” and just leaving it open-ended like that.
[00:17:54] Or sometimes after you’ve had surgery, you might not be feeling well and you’re just laying around, recovering and whatnot, and just reaching out to people if you know that they’ve recently been through that. And even saying something like, “You don’t need to respond. I just wanted to let you know I’m thinking about you today.”
[00:18:13] Something like that is so simple, and that’s never the wrong thing to say, right? And that kind of thing, just knowing that you have people thinking about you can really make a person’s day a little bit brighter when they’re dealing with things like that.
[00:18:29] Adam Walker: Yeah. A lot. That’s beautiful. I had a friend that had cancer and I would frequently reach out to him and just send funny memes to him.
[00:18:36] Exactly. Just, I’m just trying to make him smile. That’s it. Yeah. There’s no, no agenda other than that. And I think, I hope I hope that was helpful, so.
[00:18:43] Megan May: Yeah.
[00:18:44] Adam Walker: Now, all right, so let’s talk fundraising for a minute. You’ve been in- very involved in fundraising in your local area.
[00:18:51] Why do you do that? Why is that important to you?
[00:18:54] Megan May: So, I mean, I am aligned with everything that Komen stands for when it comes to fundraising. I want to see an end to breast cancer, and that’s not possible without money, right? We need money for research. We need money for screenings. We need money for treatment.
[00:19:13] So I know that money is needed, so I don’t have a problem helping to make that money so that we have it to do all of those things to hopefully someday put an end to cancer. I had insurance. I had an awesome support system. I knew about early screenings. I had all of those things already for me, but there’s a lot of people out there that don’t have all that.
[00:19:38] They don’t have the insurance. They don’t know that early screening is necessary for certain groups of people if they’re high risk and things like that. So Komen does so much from an education standpoint for the community and then all of the patient support services that they offer, screening services, financial assistance, and then all of the research that they fund to help hopefully someday find a cure for cancer or treatments that are easier for people to live with.
[00:20:08] There’s a lot of people that have metastatic breast cancer, so their breast cancer is not something that they can have a surgery to remove. It’s something that they’re going to potentially need treatment for forever. You want to make sure that those treatments that people have to take are things that are tolerable, because quali- quality of life is very important.
[00:20:27] So anything we can do to make life better for people that have breast cancer, I support, and I know that they need money to be able to do that, so I have no problem helping fundraise for that.
[00:20:39] Adam Walker: I love that. I love that perspective. It’s so good. All right. Well, Megan do you have any final message or final advice for our listeners?
[00:20:51] Megan May: I think I just want to make sure that everybody knows that you need to know what your normal is, so you should be doing self-exams so that as soon as something isn’t normal, you notice it. And when and if that ever happens, you need to go in and get it checked out, and then you need to make sure that you are doing any kind of recommended screenings at the appropriate timeframe based on your age and your health history and your family history and all of those things.
[00:21:23] Screening’s not the same for everybody. There are things that impact how frequently and what age you start and things like that. So knowing that is so important making sure that you go in a- and have that done when you need to so that if there is ever a problem, it’s caught as early as possible.
[00:21:41] Adam Walker: That’s right. That’s right. We talk about that all the time on this show, and it’s so important, and I appreciate you continuing to remind us as well. Megan, thank you for I don’t know, sharing your journey for being you, for being authentic, for sharing your journey and for joining us on the show today.
[00:21:56] Megan May: Well, thank you for having me. It was a pleasure chatting with you today.
[00:21:59] Adam Walker: Yeah, you too. You too. And to answer the question of what’s next for breast cancer patients, Susan G. Komen is proud to present the Breast Cancer Breakthrough Series, a virtual, shareable educational series in partnership with industry experts, scientists from academic institutions, and patient advocates who directly speak to recent clinical research findings and new treatments.
[00:22:21] This series focuses on the new science and technologies that are close to becoming available to patients. Thank you to Lilly for their support of the Breast Cancer Breakthrough Series.
[00:22:36] Thanks for listening to Real Pink, a weekly podcast
[00:22:38] by Susan G. Komen. For more episodes, visit realpink.komen.org, and for more on breast cancer, visit komen.org. Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog, adamjwalker.com.