Diagnosed at Age 28

EP 127 – Alli Coleman – 8/23/21

[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. It’s often thought that breast cancer only affects women. But unfortunately that’s not the case. Breast cancer is rare in young women, but it does happen.

[00:00:22] And when a young woman is diagnosed with breast cancer, it can be shocking at a time in life. When most young women are focused solely on family and career, all of a sudden issues of treatment, recovery and survivorship suddenly take top priority. Allie Coleman was diagnosed at the age of 28 while two months postpartum and is here today to share her story, Allie, welcome to the show.

[00:00:46] Thank you. Well, I’m really excited to talk about this, this such an important topic because it’s often not on our radar. And so to start with, can you just tell us when you were first diagnosed and what that was like?

[00:01:01] Alli Coleman: Yeah. So, um, like you said, I was postpartum. Um, my son was only two months old and I had been breastfeeding.

[00:01:09] And when I first noticed that something was wrong. Um, my lactation consultant and my OB both told me that it was probably just complications of breastfeeding because it made sense. Um, what I was telling them, like the way that it felt and, um, because my husband ended up going back to work after his leave.

[00:01:31] Um, I had to pump to continue breastfeeding at home. Yeah. You know, there’s always issues with that. But anyway, um, it wasn’t working out for me. My, I had a toddler, my two year old daughter at the time. Um, and then my son, of course, it trying to pump with that was too much. So I decided I was going to just go to formula.

[00:01:51] So I stopped breastfeeding. My right side went down like it was supposed to my left side. Did not, and it wasn’t going away. I kept calling because of COVID. I couldn’t go in. So I kept calling and from what I was explaining to them, they kept thinking that that was, it just sounded like I wasn’t doing the things I needed to do.

[00:02:11] So I kept doing it. And then finally it got to the point where it was painful. Because the cancer had grown so large and it had gone under my arm, in the lymph nodes and it hurts so bad. I called them begging them to let me come in because it hurts so much. And it, my breast was getting deformed looking.

[00:02:32] So, um, they had me come in and my OB is the one that saw me and he got an appointment for me at the breast center. And what he told me was that he thought it was a cyst. He said, it looked like assist to him. Now. I’m not sure if that was to save me a week of worrying or he actually thought it was, but in my mind it was just a cyst.

[00:02:55] So I went to the breast center and when I saw that doctor, I, you could read her face almost immediately that it was serious and she wouldn’t say cancer. But when I went in, um, the first thing they did was the ultrasound. And, um, after the ultrasound, I went straight to my first mammogram because they said, well, this looks concerning.

[00:03:21] We need to look in a little deeper. So, okay. I wasn’t, I was confused, but I don’t think I really understood quite yet what was going on. But then after the mammogram, they had me sitting and waiting for a long time. And I, my mind started going to, you know, serious places. And when they came in, they told me that it was very concerning and that they were going to do a biopsy.

[00:03:45] And then I, I knew like something was really, really wrong. And so typically these things don’t happen so quickly. I found out later as to could reaching out to other people who have been through similar experiences. Typically if you have the ultrasound, it’s like a week before the mammogram, and then it’s usually like two weeks before the biopsy, but this doctor pushed me through everything in one day.

[00:04:12] And that scared me so much to know that it was that serious. So even though they didn’t tell me that day, but that was when I was diagnosed. Like I just knew, I remember asking the doctor. So, have you ever seen anything like this, that wasn’t breast cancer? And she just looked at me and said, this is very concerning.

[00:04:33] I’m very concerned. And I was like, okay. So I didn’t officially hear the words, um, that I had cancer until the following Wednesday. This was a Friday, but I knew on that Friday.

[00:04:47] Adam Walker: Wow. I mean, so a couple of thoughts, first of all. And we’ve talked about in the shift so many times. Um, so I’m, I’m glad to hear that you are your own advocate and because that’s so important when you know, something’s wrong to be your own advocate and to push for that appointment.

[00:05:03] So I’m, I’m, I’m really, I’m really glad to hear about that. And so now let’s talk about that. So, or actually let’s talk about the diagnosis. Rare it’s unexpected. Right. And someone that was your age, given where you were in life, I’ve got to imagine it was pretty earth shattering. I mean, what were those initial days like after the diagnosis?

[00:05:23] Alli Coleman: Oh, it felt unreal. It, it didn’t feel like, um, I don’t know. It kind of made me feel like I’d stepped out of my own body for a while and not in a good way. Um, I remember initially the first thing that popped into my head was my kid. My son, sorry. My son was two months old and my daughter was two years old and I thought they’re not gonna remember me.

[00:05:49] Um, I remember the worst part and I’ve heard some other desks talk about it too, is the waiting before you know more about what you’re up against. So your mind automatically goes to the worst case scenario. And, um, I remember going to Barnes and noble and I bought. Some books that usually you buy for your mom when you’re both adults and like, you know, you have, they have grandkids and it’s like, you’re they fill these books out of their memories and things.

[00:06:21] That way you’ll always have them. I bought like three of those books because I did not want my kids to grow up, not knowing about me. And it was sorry for me. That was the only way that I could make sure they knew about me. And that’s where my head was. Um, in the beginning, it wasn’t positive, which I think a lot of people that know me, they think of me as being positive.

[00:06:51] Like I’m that person that when there is something bad, I’m always gonna try to find a well, what’s the good in that, you know, like what’s the flip side that we might not expect, but it’s going to be good. And it was so hard because it was so hard to find any good in the beginning. When there’s so much uncertainty, it’s hard to find the good.

[00:07:12] Um, when you first dive into it, you don’t have anything behind you yet. It’s all still in front of you. I feel like once you get the actual diagnosis, um, it’s hard. And then once you get the treatment plan though, that’s when you feel like finally. You’re back on your feet. When they tell you this is what we’re going to do to fight against this, it feels like they put you on your feet again.

[00:07:39] And somebody got a hold of your hand and they’re about to help you take your first steps. And it’s like, you know, there’s a long road ahead, but at least you’re on your feet and you’re ready to start pushing back because then you have a little bit of control over the situation.

[00:07:55] Adam Walker: Yeah. Wow. I don’t, I don’t know that I’ve ever heard it articulated that way, but that really makes a lot of sense.

[00:08:01] And so, I mean, I’m curious, you mentioned how difficult it was in those early days. Was there anything else that sort of helped you get through those hard days?

[00:08:11] Alli Coleman: Um, family and friends, my support system is incredible. Um, my best friends have been there for me since, oh my goodness. Forever. We’ve been best friends since like junior high school.

[00:08:25] And so we talk every day and I was text messaging them the day that I was getting the ultrasound and all of that. And they’ve been there for me ever since the beginning. Um, my parents, they really stepped in every step of the way to help my husband and I. They’ve watched the kids. My dad took me to almost all my appointments because my husband needed to be home with the kids when my mom couldn’t and, um, my nurses and my doctors have all been incredible.

[00:08:57] I know that my nurses, they, because of COVID, I couldn’t have anyone with me. And, um, my nurses became my friends, like genuinely they’re my friends. I love those women. And. They’ve been incredible. They’ve offered so much support. Um, sorry, I don’t want to be rambling. I guess I should mention though, a lot of like the outward support.

[00:09:22] I only accepted once. I felt like I could. Um, in the very beginning, when it was the darkest, this website, the Susan G Komen website, that is where I’ve found a lot of my. I remember reading the survivor stories because when, um, I’m sorry, I guess I should cut back a little bit. Um, when I first got diagnosed, I went to Google.

[00:09:50] Of course, as you should not. And Google informed me of like really bad things that aren’t even necessarily true, because if you don’t know exactly what type of cancer you have, what your receptors are, you don’t know your, your stats, you just don’t. And so it’s dangerous to Google when you’re not even Googling correctly.

[00:10:16] Um, and it’s very disheartening. So. Anyway, eventually my dad, he had enough of watching me, hurt myself like that. And he told me that if I was going to look up anything online, that it should be from reputable sources. So Susan G. Coleman, I got on there, I was reading things on there. And when I found the survivor stories, that was the first thing that really helped me.

[00:10:40] Like it helped me see like, okay, other people have done this and they’ve gotten through it and I can do that. And especially, I think when I was first diagnosed, the people that I liked reading about the most were the people that were still in it, like in the thick of treatment. Because when I first was diagnosed, seeing women ringing the bell was too much for me because that didn’t feel possible for me at that point.

[00:11:07] It wasn’t until I finally had some tracks. And had been going through treatment for a while and watching other people that were just a little ahead of me ringing the bell that it felt like I can do that. I can get there.

[00:11:20] Adam Walker: I love that. I love that. I mean, that’s, that’s really encouraging. And honestly, that’s part of why we do this is so that people can, can hear your story and understand that they can get to, to where you’re at.

[00:11:30] And then you can hear someone that’s ahead of you and, and get to where they’re at. So it’s just so important. So, so let’s, let’s talk about. Being a mom. You’re, you know, you’re a mom at the time, you were a new mom, which is exhausting and difficult. And so talk to us, talk to us about what it was like going through this journey as a new mom.

[00:11:50] Alli Coleman: Um, it was hard to leave the kids at home. For those treatments, um, I’m her two positive and so Herceptin and Perjeta. And, um, like I had the first six rounds were four different chemo therapies and it would take all day, plus my hospital’s about an hour away. So we would drive an hour and each medicine would take about an hour.

[00:12:16] And then there was time between those medicines. It would, it was an all day event. So that was really hard being away from my kids, especially in the beginning when I felt like I barely had any time left with them at all. Anyway. Um, but eventually I got more confident, I suppose I started trusting my faith more than my fear.

[00:12:40] And, um, so it got a little easier in that regard. Um, as for like my kids is ages. I’ve talked to some other women. I’ve met some fantastic women at my treatment center, because like I was saying, um, when you can’t bring anyone with you, if you’re someone like me, you’ve got to talk, like you’ve got to find people to talk to.

[00:13:03] And so I found some amazing friends up there at the treatment center that are young moms and some of them are more like my mom’s age, but we’ve still gotten to be so close. We talked about some of the pros and cons of having kids my age, like, um, I want to backtrack to one of the first people that I met, her name was Sharon and she was an older lady she’s in her seventies.

[00:13:32] Um, and I remember talking to her, she was one of the very first people that I was talking to. She has the same type of cancer as me and, um, I was telling her about my kids and her reaction was. Wow. You’re so lucky. And I was like, I just looked at her like, as she looked at me, like, why are you confused?

[00:13:53] And I said, I’ve never heard anyone tell me that I’m I’m lucky. And she said, well, I just mean that going through all of this, they give you a reason to get out of bed every day. And I was like, wow. And that helped me a lot to think of it that way. Because she was right. Like every morning I had to get out of bed.

[00:14:16] I know it was some, some of my friends they’re like, oh, I stayed in bed all day. It’s like, I can’t do that. You know? And my kids, they made sure that I was up every day and they really helped me make sure that I exercise not heavy, but we walked to the park and we, we just did things together. They did bring so much joy to my life while I was in such a dark place.

[00:14:40] Um, and I think one of the positive sides too, of having kids that were so young was that I didn’t have to comfort them because they didn’t understand what was going on. I’ve met some really good friends that are going through this that have children that are older and they’ve had to not only convince themselves that they’re going to be okay, but also their children.

[00:15:04] And I think in that way, it’s a blessing. My daughter, she was two, it was really important to me to tuck her in at night. And I remember every night when I would tuck her in just really thinking to myself how important that is and how much of a blessing is to be able to be here with her and to tuck her in at night.

[00:15:31] And. Um, one night I had just wrapped up chemo and surgery was the next step and it was only a few days away. Um, I was sucking my daughter in and she told me, mommy, God saved you. And I was like, yeah. And like, we hadn’t been going to church because of COVID and chemo, but don’t go together. But so like I knew she hadn’t heard those words specifically.

[00:16:02] God saved you. And I was like, yeah. And she goes, mommy, God reached down. And he picked you up in his hands and he saved you. And. I don’t know. I think a lot of women that go through this, they, they lean into God more. I know I did. And when she said that to me, it felt like he was talking to me and it gave me so much free assurance and it just made it feel like, you know, things are going to be okay.

[00:16:37] Adam Walker: Wow. That’s beautiful. That’s beautiful. Thank you for sharing that. I know that I know that’s a. And emotional, uh, and, but inspiring thing. So, wow. That’s great. So I, I know you’re passionate about sharing your story. That’s part of why you’re here. And I know a lot of that centers around the fact that you’re so young and that makes it a little bit unusual.

[00:16:59] And so I’m just curious, what are some ways that you’ve done this and why is it so important to you?

[00:17:06] Alli Coleman: I, um, I have an Instagram account that I created because. Like I said, when I found the survivor stories on the Susan G Komen website, that’s what helped me. And I knew from the beginning that I wanted to be able to share my story because, um, like you said, there aren’t very many of us that are young going through this.

[00:17:29] And if you do go to Dr. Google, which most of us do, you’re not going to find good statistics when you’re young. Because most of the time when we’re younger, it’s more aggressive. So the cancer spreads faster and it, um, just grows faster. So it’s working against us a lot faster than what it does for older people, just in general.

[00:17:52] But also when you do find something suspicious, you’re oftentimes told that it’s from breastfeeding or it’s from just hormones. Like, because those things can happen too. But it doesn’t, it gets brushed off so much more easily. So not only is it growing faster, but they may not think cancer when they first hear of your symptoms.

[00:18:14] So that’s why it’s so important that you know what to look out for and that you are checking yourself because if you’re checking for it yourself, you’re going to find it a lot sooner than a doctor will. And that goes for any age. Um, but sorry, I ended up to spread my story. Um, I started an Instagram account and that was both to educate people that don’t yet have breast cancer or hopefully they won’t ever, but it can educate them as to what this journey is like.

[00:18:45] And even more so though, it’s for the other women that have been diagnosed that need to find the faces of people who are fighting it or have already fought it and came out on the other side. It’s to see what things are like, like steps, like radiation therapy. Most people are not educated about radiation therapy.

[00:19:06] We don’t have to be. And so I remember even though that was one of the easier treatments for me, um, it was like scary because I’d never seen anyone go through it. I didn’t know what it was like. So I tried to be really open about what it was like for me. And. It means so much to me, even with one person says, thank you so much.

[00:19:28] Like, you know, I ordered that cream because you said it helped you. And it really helped me too. Or thank you for showing me what that machine looks like. Now I’m less scared about it because I can at least wrap my head around what this is going to look like or things like that. And small things like hair growth.

[00:19:45] I know when I found other survivors, I’m like, what’s my hair going to look like when it comes back after two months or four months. And like it’s encouraging because. The good the other side and you can see it in front of you. So it helps you get closer to it.

[00:20:01] Adam Walker: I love that. And you mentioned your Instagram account a few times, but I mean, please share with us what is the Instagram account?

[00:20:07] Alli Coleman: Oh, okay. It’s killer left boob.

[00:20:13] Adam Walker: Nice. It’s a that’s descriptive and it tells your story right there. Like that’s, that’s everything, right? That’s that’s the summation of your story right there.

[00:20:20] Alli Coleman: So sense of humor to get through things though. I may not have thought it through completely that I would be telling some of my church friends about this account.

[00:20:29] So

[00:20:32] Adam Walker: I think that just makes it more interesting.

[00:20:35] Alli Coleman: They’ve all been supportive. It just feels funny when you’re standing, you know, in the middle of church and you’re like, oh yeah, that’s the name? But yeah, it’s, it’s, it’s helped me so much. It’s helped me connect with other people that have helped me. Um, I’ve had incredible things happen just from connecting with other survivors.

[00:20:56] And I know I talked a little bit earlier, the analogy I always think of, like I was talking about the dark tunnel, cause that’s in my head. That’s what it feels like. When you first get diagnosed, it feels like you’re getting dropped into this dark tunnel and you cannot see anything around you. But the great news is that you’re not alone.

[00:21:16] You are surrounded by other survivors and some of them have been in that sun a little bit longer than you. And they’re a little bit further ahead and they can see the light. So it’s kinda like we all just grab hands and it, that feeling is so real. When you find other breast cancer survivors. If you, it doesn’t matter where you’re at, you grab them.

[00:21:35] And you’re like, what can I do for you? Like, if they’re behind you, what can I do for you? Like, it’s going to get better. When you were in the very beginning and those people are, they’re grabbing you and they’re like, you’re going to get through this. Like, let’s go. And that’s like, we’re all just in this giant chain together.

[00:21:50] And it’s so powerful and we care about each other in a deep way. Whenever somebody has a success, we all are tiering and we all feel it. And whenever there is something bad that happens a loss. We all feel it. Yeah. It’s just such a powerful community that I never wanted to be a part of, but I’m so thankful for all the people in it.

[00:22:12] Adam Walker: That’s beautiful. That’s really, that’s a really beautiful way to look at it. I, I really appreciate you sharing that. So, so Allie, final question. What would your advice be to other young women who might have been recently diagnosed?

[00:22:25] Alli Coleman: Stay off of Google, but no, seriously stay off. Um, yeah. There’s there’s a lot of things.

[00:22:33] The first one, I would say, when you were very first diagnosed, you need to know that it’s going to get better. And I get that find those survivors because we’re living proof that your life has not ended. And that you’ve got a long way ahead of you like of good and bad. But you know, there is a lot of good, a lot of it is about attitude.

[00:22:54] Um, but you don’t have to be positive all the time. You need to let yourself grieve. A big part of you is changing like your whole life changing. And I remember a lot of people just made it sound so bleak because you know, treatment is hard. And when you come out on the other side, you are going to have aches and pains that you’re not used to, but that’s where the perspective comes in.

[00:23:19] Because if you just think about where you were when you started so desperate for life, it’s like, if you’ve still have. There’s so much good that you can find in that, like you were still here. I know last year I was going through chemo. I didn’t leave the house very often. Like in with COVID, you know, there was nothing, but this year I get to go out with my kids.

[00:23:42] I have energy this year and I get to do all these great things. Like life got so much better. And despite the aches and pains, it’s like, I’m here. And I just. Get to be here. I get to watch my babies grow. I there’s so many good things. Um, so yeah, focusing on the good don’t make yourself feel bad if you have a bad day and do connect with those other survivors, because that helps immensely.

[00:24:10] Sorry, I’ll give you another piece of advice too. Um, one of my friends told me when I was having a particularly bad day going through chemo. Um, uh, I was sick and so my mental health was just not good. She told me, you know, Allie, you can choose faith. The things are going to get better, or you can let yourself live in fear that they’re going to get bad.

[00:24:36] And she said, but you can’t have both. You only have room for it. And that advice I hold on to that, not just with cancer, but with lots of things in life. And I think I’ve given that advice out to lots of people for all kinds of circumstances, but it’s true. You can let your mind wander in the what ifs bad, but you can also hold on to the faith that it’s going to get better.

[00:25:02] Adam Walker: I love that. I love that. I love your, your mindset. I love your passion and love for your family and in particular, your passion and love for, for this community and for helping people in this community. And, and just thank you for sharing your story today. Cause I think, I think it’s inspired me. It’s certainly inspired this community and thanks for taking the time to be

[00:25:22] Alli Coleman: with us.

[00:25:23] Thank you so much for having me sincerely.

[00:25:29] Adam Walker: Thanks for listening to real pink, a weekly podcast by Susan G Komen for more episodes, visit real pink.com and.org 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 at AGA Walker or on my blog. Adam J walker.com.