Sarah Norton - Living with Stage IV IBC

Sarah Norton is a 32 year old mother who is living with Stage IV Inflammatory Breast Cancer for almost two years. She will share her journey, including the importance of advocating for proper care, raising young children in treatment, and strategies to balance planning for legacy work while remaining hopeful of maintaining her No Evidence of Disease status for a long time.  

Transcript

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Terry Arnold: Hello, I'm Terri Arnold from the IBC Network on Talk IBC podcast, and I have with me Sarah Norton. And Sarah was so generous to be willing to podcast and talk about her personal unique experience, but also talk about what it's like to be dealing with inflammatory breast cancer with a brand new baby and a toddler. She's up in the Chicago area, and she's joining us today. Sarah, thank you so much for being here, and let's just jump right in and tell me about

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Terry Arnold: Your experience with inflammatory breast cancer.

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Sarah Norton she/her D33: Sure, yeah, so, like you said, I had a baby in July of 2023. I had my little girl, Amelia, and,

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Sarah Norton she/her D33: In February of 2024, I stopped breastfeeding, and I noticed some changes in my breast, and I attributed that to

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Sarah Norton she/her D33: you know, weaning and stop breastfeeding. And so, it was… I was keeping an eye on it, and I really thought, you know, I probably have mastitis, it's probably an infection from breastfeeding, so let me go to

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Sarah Norton she/her D33: urgent care, or immediate care, is what we call it here. So, I went on a weekend, on a Saturday, to a doctor, and I said, you know, this… this is getting so painful that Advil's not cutting it, Tylenol's not cutting it.

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Sarah Norton she/her D33: And I just need to get this checked out. And so, he looked at it, and I give this doctor a lot of credit, because he has seen all different kinds of patients all day, and he took me very seriously. He did an ultrasound in the office, and he said, you know what, I'm gonna get you on antibiotics.

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Sarah Norton she/her D33: But I think there might be a little bit more going on here than just mastitis. He's like, so on Monday, I'm gonna get you an appointment with, it was with a doctor who specializes in…

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Sarah Norton she/her D33: And breast cancer, and I was like, what? Like, it kind of caught me completely off guard. And I, at that point, actually wasn't even that worried. I was just worried that if this was an infection and had been going on for so long, that I wasn't worried about being, like, getting sepsis, because it was going so long untreated.

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Sarah Norton she/her D33: So I did not get any relief from those antibiotics, and went to the appointment that they had made, and in the office, they did more ultrasounds and examined my breast, and

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Sarah Norton she/her D33: They actually wanted to do a biopsy right there in the office, but I wasn't ready for that. I wasn't prepared for that. I didn't have anybody with me. I was very squirmish of needles at that point. So, they actually

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Sarah Norton she/her D33: booked me into, like, a real place where they do biopsies, and I could get the numbing shot and everything. So that was on Wednesday, a couple days later, that they did, the skin poke biopsies.

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Terry Arnold: I have a question for the people that can't see you. You're clearly a very young woman, you said you just had a baby, but the ones that are listening on Spotify, how old are you, if you don't mind me asking?

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Sarah Norton she/her D33: no, no, I don't mind at all. I'm 32, and I was 31 when I was diagnosed, so this was not on my radar at all.

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Terry Arnold: And it's interesting to me, and I don't want to go down a rabbit hole, you know, people say, why didn't you get checked? You could be old enough for a mammogram for another 10 years.

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Terry Arnold: You know, I mean, people… we need people to understand that there are breast cancers that show with outward visible changes, and this is not your first baby.

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Terry Arnold: But had you ever had mastitis before?

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Sarah Norton she/her D33: No, no, I just knew that something wasn't right.

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Sarah Norton she/her D33: And my right breast was almost double the size of my left breast at that point, and I was like, it's like a clogged duck, or something is not right.

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Terry Arnold: I nursed 5 babies, and I never had mastitis, but I could understand why, even with subsequent nursing, that you could think, oh, this is mastitis, this is what I've heard about. I've never.

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Sarah Norton she/her D33: experience.

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Terry Arnold: that, so I'm glad you were diligent. How long do you think it was between your first symptom to your diagnosis time?

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Sarah Norton she/her D33: So, it was about 2 weeks. It was really quick, and I am thankful for that.

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Sarah Norton she/her D33: Yes, it was very quick, because I… I noticed, I was like, this is uncomfortable, this is uncomfortable, but it got to the point where I couldn't even… I called off of work because I couldn't put a bra on, because it was hurting so bad, and that was on a Friday, and then I was like, you know what? I just gotta go and get this checked out. And Saturday, I couldn't wait until Monday. It was hurting so bad.

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Terry Arnold: I understand that feeling. I was what I call a small C cup prior to having breast cancer, and then I went to a double D overnight. It was just awful. You know, I was not a busty girl, and that change was so dramatic, and they told me at 49 I had mastitis.

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Terry Arnold: Now, here you are with your brand new baby.

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Terry Arnold: And you've got a toddler, I'm assuming.

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Sarah Norton she/her D33: Yes, he was 3 at the time.

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Terry Arnold: Right, and here you are. You're probably feeling very out of place in this breast cancer world. Yes. What were the next steps for you?

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Sarah Norton she/her D33: So, it was actually interesting, too, when they were doing the mammogram and the ultrasound and the biopsies in the office, one of the nurses, who was so sweet, and she was a very experienced nurse.

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Sarah Norton she/her D33: said, you know what, hon? I don't think this is breast cancer, because breast cancer doesn't hurt like this. She actually said that to me while I was getting the biopsy. So that's why, when I heard the word inflammatory, I had never… I'd never heard of IBC before, inflammatory breast cancer.

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Sarah Norton she/her D33: And,

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Sarah Norton she/her D33: it's clear that a lot of healthcare providers also weren't familiar with it, because she was trying to comfort me in that moment. She's like, I don't know what this is, but this isn't breast cancer, it doesn't hurt like this. And so…

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Terry Arnold: I'm gonna put my hand at the back here real quick here, because…

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Terry Arnold: when she doesn't hurt like this, I know people don't think breast cancer shows, hurts, whatever. I love the Know Your Lemons campaign. Have you ever seen that? It's a little egg carton with a dozen lemons in it? And each lemon has a blush or a dimple or whatever, because I think everyone should, tape that to their forehead and tell their friends about it.

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Terry Arnold: Because those outward physical signs show, but it's interesting that she'd say it doesn't hurt like this. Was that of the biopsy moments?

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Sarah Norton she/her D33: Yes.

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Terry Arnold: Because I want to say something about that.

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Terry Arnold: Real quick, I, go to a lot of research meetings, and one of the things I realize is when they put that numbing cream in the breast to do a traditional biopsy, for some reason, for IBCers, it doesn't take right. And because we don't have a lump, and it's webby and diffused.

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Terry Arnold: the… the numbing cream, they say it pools, and I've heard doctors say you can tell it doesn't dissolve right, because the breast goes blue. It pulls on the top of the breast. I'm using my hands like people can see me, but those of you on YouTube can. It pulls on the top of the breast.

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Terry Arnold: And doesn't penetrate. And so we're down under there wiggling and trying to get away from that needle, especially if you're like me and you, I'm scared of needles.

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Sarah Norton she/her D33: Yeah.

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Terry Arnold: you made it pretty clear you don't like them either. We're wiggling under that biopsy. They think we're being either babies, or dramatic, or whatever, and telling us it doesn't hurt this way. That's actually

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Terry Arnold: Plastic for us.

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Terry Arnold: Because that numbing cream doesn't work well.

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Sarah Norton she/her D33: I felt everything.

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Terry Arnold: She meant well, but that's so inappropriate for her to be dismissing what could be a serious diagnosis. So, I wanted to throw in that bit of education, because I've had women tell me.

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Terry Arnold: They couldn't finish my biopsy, because it hurt so much.

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Sarah Norton she/her D33: bad. They did my breast first, and then they were going to my lymph nodes, and I was like, if my breasts hurt that much, I can't imagine, like, my armpit. And I… that's why I was crying, and she was trying to be comforting in that moment, but it was so painful, and

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Sarah Norton she/her D33: Later down the line, I did get more biopsies at MD Anderson, and it was a totally different experience, much better. They gave me a lot more numbing agent, and made sure I couldn't feel that needle before they did the biopsy, so…

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Terry Arnold: These things are good pieces of advice, because sometimes women don't get to plead the biopsy, or they don't get a full biopsy. And also, we do want to educate the doctors who are dealing with this.

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Terry Arnold: that, just like we need unique tools to be diagnosed, we need unique tools to get a proper biopsy. So, you're in Chicago, you're doing all this in Chicago, later you… and I learned this from MD Anderson, about the numbing and things. So, what happens next?

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Terry Arnold: So, I finished those biopsies, and about 4 days later, I was actually at work.

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Sarah Norton she/her D33: doing a presentation, and I saw I had 3 missed calls come through from the doctor's office. And in my mind, I was like.

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Sarah Norton she/her D33: there's some infection going on, but when I saw 3 missed calls, I was like, oh god, my stomach dropped. I stepped away during a break, and my computer was still projecting in the room full of 20 people that I was presenting to.

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Sarah Norton she/her D33: And I went down to my office and got the call, and they said, hey, Sarah, we have results, it's not good news.

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Sarah Norton she/her D33: It's cancer, it's grade 3, so it's very active, and we want to get you in for further tests today.

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Sarah Norton she/her D33: And I was just completely taken aback. I was frozen. I just left my computer upstairs in the boardroom and, called my wife and went home, and I was just in shock. And so, luckily, my brother, he actually does cancer research. He is a PhD.

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Sarah Norton she/her D33: And he was one of the first people that we called and said, you know, this is what's going on. He's like, I wanna… if it's okay with you, I wanna come to all of your appointments with you.

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Sarah Norton she/her D33: So we went and saw our doctor, and I'm very thankful they assigned me a surgeon, and they assigned me an oncologist, a medical oncologist, and they met with me together and explained that I had inflammatory breast cancer. They could tell by the presentation.

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Sarah Norton she/her D33: And I'm really thankful that they did that part right, and they explained that the treatment for inflammatory breast cancer is the trimodal treatment, where first we're going to get you right into chemo, so we have to place your port, and then we'll get you into chemo.

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Sarah Norton she/her D33: Then we'll look at having, the radical single mastectomy, and then we're gonna do radiation. So they were up-to-date on their plan,

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Sarah Norton she/her D33: But I got my CT scan and found that they actually… there was 2 nodules on my pubic bone as well, so that made me stage 4.

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Sarah Norton she/her D33: So, I was getting my port placed, I was getting ready to start chemo, so from the day that I found out that I got that call at work to the day I started chemo, it was only 10 days. So, they moved quickly, they diagnosed me correctly. At first, they gave me the right treatment plan.

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Sarah Norton she/her D33: But I felt, once they found those little nodules on my pubic bone, that there was a sense of giving up, because then my medical oncologist met with me and said.

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Sarah Norton she/her D33: change of plans, you're stage 4, so now we're gonna just give you palliative chemo. And I was like.

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Sarah Norton she/her D33: taken aback. No, no, no, no, like, you don't understand. I still want that surgery. I still want the radiation. I have two young babies, like, I… I'm 31 years old. I don't want to just do palliative chemo.

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Sarah Norton she/her D33: So I had to keep working with him when I was really unhappy with him, just to keep the process moving and get that chemo started. And at the same time, my brother, connected me with one of his mentors in the cancer research field.

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Sarah Norton she/her D33: And they got me connected with a doctor from University of Michigan who is very, very knowledgeable about IBC and has been working with IBC for years.

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Sarah Norton she/her D33: And she actually gave my brother her personal cell phone, and this is the one thing that could make me emotional, because I went from being scared to death, thinking that I had weeks or months to live because of my doctor, and then when I spoke with her, her name's Dr. Sophia, and I don't know how to pronounce her last name, but…

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Terry Arnold: Yeah.

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Sarah Norton she/her D33: Yes.

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Terry Arnold: It's Sophia. I know who it is. I know her very well. We're very good friends.

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Sarah Norton she/her D33: Oh, yeah, so she gave her personal phone number to me, and we had a three-way call with her, my brother, and then my wife and I, and she just turned my whole perspective around in one phone call.

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Sarah Norton she/her D33: And she's like, Sarah, if you don't like your doctor, if he's giving up that easy, she's like, it sounds like you're barely stage 4. I've never heard that, like, barely stage 4.

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Terry Arnold: It's completely safe for it.

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Sarah Norton she/her D33: Yes. She's like, you gotta keep pushing. She's like, have you heard? She's like, I would treat you here at U of M, but…

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Sarah Norton she/her D33: Really where you should go is MD Anderson, because they have an inflammatory breast cancer clinic, and I was… I was like, what? I live in Chicago, what do you mean, go to Houston? But I…

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Terry Arnold: It is to do with a lot of things, but IBC is a rare disease, so…

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Terry Arnold: You know, if you can, get close to the… the…

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Terry Arnold: the few IBC clinics in the world, you're going to get best practice, because they're creating what the other places hopefully will follow. But for… to me, I'm very fortunate, I live in Houston, and I was able to be treated there, but I tell people, if you can.

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Terry Arnold: you're also part of the formation of new research, then hopefully then we can also take that information back home, so then people aren't forced to travel, but I'm glad that you were able to do that.

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Terry Arnold: And I love the barely stage 4 part. And by the way, I always say, you're not stage 4, the cancer's stage 4. But I get what you mean. Yeah, I want…

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Terry Arnold: I don't want us to lose ourselves in this process. You know, we don't become our cancer, although it can be overwhelming. And, so anyway, so what happened next?

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Sarah Norton she/her D33: Yeah, so that… I got off the phone with her, and I finally felt like I could exhale.

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Sarah Norton she/her D33: And I applied, or filled out the referral form, or whatever it is, on the website for University of Michigan and for MD Anderson. I'm like, I'm just gonna put them both out there and see who gets back to me. The next morning, MD Anderson called. Like, it was such a quick turnaround.

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Sarah Norton she/her D33: And they scheduled me for an appointment the following week.

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Sarah Norton she/her D33: So, that was huge. They reacted and responded really quickly. All throughout these couple of weeks, I was still… I had already had a couple, infusions of the AC and Taxol.

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Sarah Norton she/her D33: And then we went to Houston, my wife, my brother, and I, my parents watched my kids, which I was very thankful for. And…

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Sarah Norton she/her D33: they… I love it. It was like a scene from Grey's Anatomy. I've talked to other people who've gone to the IBC clinic, where you get…

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Sarah Norton she/her D33: all of the doctors, you have your medical oncologist, the surgeon, the radiation oncologist, and, like, the nurse practitioners. Everybody sat down and met with us, and it was a long day, but they redid all the tests, the

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Sarah Norton she/her D33: the scans, the biopsies, and again, it was a much better experience than my first biopsy. I was really scared to get biopsied again.

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Sarah Norton she/her D33: But I'm glad that I did, because I had had 4 infusions by that point, and my scans were already… my breast was already looking way better, and the nodules on my hip that were there originally had already, like, pretty much gone away. So I was already responding to that chemo.

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Terry Arnold: In the cancer world, it might seem like an odd expression, but they say bones is best.

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Sarah Norton she/her D33: you know.

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Terry Arnold: if somebody has to have a stage 4 spread, there's so much treatment for bones, and that someone can achieve NED, which is no evidence of disease, after having a stage 4 diagnosis. And I'm glad that you kept asking. I know other women who were

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Terry Arnold: in the same place as you. I know for myself, I was told at my diagnosis, they said I was misdiagnosed for 4 months by 5 doctors, and they said.

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Terry Arnold: my… I wasn't at an MD Anderson at that point. I was at a place near NASA in Houston, major place, who said, you have inflammatory, and it's because you've been misdiagnosed for 4 months, it's too late, and we're going to start you on palliative care. And I'm like, wait, you went from, there's nothing wrong with you, you're crazy, to, oh my god, we missed it, with nothing in between?

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Terry Arnold: Yeah.

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Terry Arnold: completely unacceptable.

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Terry Arnold: And, but honestly, I'm a hopeful person, but when I went to MD Anderson, I truly expected me to donate my body to science. I… I… and they were like, we think we can help you. I'm like, you're kidding!

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Terry Arnold: But what kept me in this world all these 18 years is women like you. I keep meeting women like you.

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Sarah Norton she/her D33: who…

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Terry Arnold: need help.

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Terry Arnold: You know, and… and…

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Terry Arnold: That's why the IBC Network is here, that's why we're funding research, that's why we're doing these podcasts. We want your story out there, because we're told cancer doesn't show, cancer doesn't hurt, cancer has a lump, you don't get it young, and here you are.

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Sarah Norton she/her D33: Yeah.

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Terry Arnold: Opposite of everything.

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Sarah Norton she/her D33: Yes. You're doing okay.

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Sarah Norton she/her D33: Yes, yes, and…

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Sarah Norton she/her D33: So I did meet with MD Anderson, and I came back so hopeful from that, I was like, okay, I am gonna go through these three stages of treatment, and I'm gonna be great, and I'm gonna be fine. And I thought that I'd take that treatment plan and go back to my home oncologist and be like, look, here's our plan, here's what we're gonna do. And he, that doctor, who I…

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Sarah Norton she/her D33: I'm still not resolved with, I'm still upset with him. He said, oh, like, kind of was like, oh, honey.

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Sarah Norton she/her D33: That… I… I can't believe they would give you this hope. He's like.

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Sarah Norton she/her D33: Sometimes there's hope, and sometimes there's false hope, and they just gave you false hope. And I was upset because I had always had my wife and my brother with me, and I felt like he waited till I was alone to, like, have this conversation with me.

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Sarah Norton she/her D33: And he…

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Sarah Norton she/her D33: tried to take the wind out of my sails, but I remembered my conversation with Dr. Sophia, I remembered my conversation with my MD Anderson team, and was like, alright, you can do my infusion this week, and I am transferring hospitals, and I will find somebody who will treat me. And, with the help of my sister, she works for Northwestern Hospital as an event planner. She reached out to their CEO and just said.

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Sarah Norton she/her D33: we have a plan from MD Anderson, she… this is her situation, can you find us a doctor who will be collaborative? And they said, yep, we'll give you the best in the West, and they gave me my current medical oncologist, who I love. He, definitely is collaborative and is happy to work with MD Anderson and follow their plan.

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Terry Arnold: Do you mind sharing that name for the people who might be in the Chicago area?

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Sarah Norton she/her D33: Yeah, so his name's Dr. Menini, and he works for Northwestern, in the suburbs.

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Sarah Norton she/her D33: Dr. Menini.

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Terry Arnold: People call us all the time and say, hey, you know, I can't, or I don't want to, or I'm having difficulty, so we don't mind naming names of people who are willing to be collaborative. And I know, my local doctor told me the same thing. She said, if you go there, don't come back.

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Terry Arnold: you'll be a rat in a cage, you'll be part of an experiment. I never felt that.

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Sarah Norton she/her D33: Experience.

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Terry Arnold: And it is big, and it is overwhelming.

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Terry Arnold: And I'm a big believer in hope, and I don't believe in giving false hope, but I also see really wonderful success stories post-IBC diagnosis.

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Terry Arnold: I think the harder we get the information out, and the more we fund research, there'll be more women who are well. Now, so…

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Terry Arnold: How many years has it been since you first started treatment? Tell me the numbers again?

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Sarah Norton she/her D33: It was… I was diagnosed in April of 2024, so it's been 18 months. I completed the trimodal treatment. I went to Houston for radiation.

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Sarah Norton she/her D33: That was kind of a tough decision. If I wanted to stay home and do it or go to Houston, I decided to go to Houston. I was there last year at this time for 5 weeks, away from my family. It was hard because it was over the holidays, but totally worth it.

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Sarah Norton she/her D33: And I also had my mastectomy done in Houston. So I traveled for the surgery, came back a couple days after, stayed home for a month to recover, and then flew back by myself for radiation.

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Sarah Norton she/her D33: And…

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Terry Arnold: A lot of women do that, who are out of town, because you can get your chemo anywhere. It's just, you know, it's a formula. The surgery, because it's a non-skin-sparing radical mastectomy.

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Terry Arnold: Some doctors find it hard to do that to someone young. It makes them… they'll say things like, oh, are you sure you want to save a little bit of skin? You know, you might want that breast back, things like that.

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Terry Arnold: because MD Anderson does this so much, or the data farmers in the world do this so much, I think they're a little bit more comfortable doing that to younger women, they kind of get the big picture. The radiation, is something a lot of women do like to travel to get, if they can, because Dr. Wendy Woodward

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Terry Arnold: is at Indy Anderson, and she's the most published scientist on, scientist on IBC radiation, and it's a different…

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Terry Arnold: it's a much more concentrated dose. Again, something people aren't used to doing.

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Sarah Norton she/her D33: Yeah. That formula can be taken back locally, but tell me…

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Terry Arnold: what was that experience like? Because a lot of doctors tell patients, if you've had a good response to chemo, you've had a good response to surgery, you can skip radiation. And each step… I see you nodding your head now, yeah, because each step is its own individual magic.

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Sarah Norton she/her D33: Oh, sorry.

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Terry Arnold: So, what was the radiation like for you?

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Sarah Norton she/her D33: Yeah, so I did…

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Sarah Norton she/her D33: do the consult with Dr. Stouter, who works with Dr. Woodward at MD Anderson, and then I…

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Terry Arnold: Woodward, by the way. He trained Wendy Woodward.

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Sarah Norton she/her D33: Oh, okay, so that's great, yeah. So…

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Sarah Norton she/her D33: I took that back home to my Northwestern radiation oncologist and said, okay, they want to do 44 radiation treatments twice a day, Monday through Friday, you know, for 5 weeks. And he's like, I don't think… he's like, you had such a good response to the chemo and to…

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Terry Arnold: Just what I said, I called it.

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Sarah Norton she/her D33: Yep, and I… my alarm bells were going off, and I'm like, crap, I'm gonna have to pack my bags and be gone for a month, which I knew. I was like, this is one time to be selfish and take care of myself and…

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Sarah Norton she/her D33: if it means being away from my family and it gives me more time in the long run, I'll do it. So, I did do that.

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Terry Arnold: tell women.

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Terry Arnold: What would you do if it was your kid?

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Terry Arnold: Right?

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Terry Arnold: Yeah, I know what you… I heard what you said, I get it, about being selfish. I always tell women, put yourself at the front of the line.

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Terry Arnold: you know, give yourself this chance for your long-term wellness. This investment in this treatment right here is going to let you be here for years to come.

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Terry Arnold: I think women…

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Terry Arnold: find it hard to do that, because we want to serve our families, we want to serve, you know, and so I'm glad that you… you put yourself to the front line and gave yourself that radiation. What was radiation like? For me, it was tough. How was it for you?

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Sarah Norton she/her D33: it was… it was pretty tough. I feel like people downplayed it from other people I've talked to, like, oh, this is the easiest part of the three steps, but it was really intense. I had a lot of struggle getting my arm up over my head still from after surgery. I was working with a physical therapist, but I still… it was uncomfortable to keep it raised for 20 minutes at a time, and that…

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Sarah Norton she/her D33: I was worried it was going to delay me, but luckily they worked with me on that.

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Sarah Norton she/her D33: And then, as I got going, I started to get burns, like, in my armpit, and it was just really uncomfortable to put my arm up or down, or wear anything that touched my armpit. It was just really uncomfortable.

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Sarah Norton she/her D33: And then just… I was working remotely, so having two appointments a day, and sometimes 3 or 4 appointments a day, it was hard to juggle, but I… one positive out of that is I've met two really good friends in the radiation waiting room.

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Sarah Norton she/her D33: who also had IVC, and so that was a plus of the experience. I was able to hang out with them and spend time together with them, too.

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Sarah Norton she/her D33: So…

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Terry Arnold: That's true. I found radiation tough, and again, people downplayed it. I found the fatigue to be something that really surprised me. I just left. I wasn't depressed, I just… it just…

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Sarah Norton she/her D33: tired.

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Terry Arnold: But, my skin healed very quickly.

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Sarah Norton she/her D33: And.

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Terry Arnold: And it was sort of a head trip, like, whoa, did this just even happen to me? How was that for you as the skin started to heal?

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Sarah Norton she/her D33: It only took, like, I would say the week after I finished radiation, it continued to progress, like, getting a little bit more painful in my armpit, and then after that, it started to heal. So I just kept applying the creams, and I had, like, a big bandage thing on my chest so I could wear a bra more comfortably.

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Sarah Norton she/her D33: But it only took, yeah, about a month for my skin, and it looks pretty normal now. Like, not really discolored.

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Terry Arnold: I don't know how trippy, though, to think what all you've been through. Now, where are you now? What is the official status of the disease?

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Sarah Norton she/her D33: So, I am currently no evidence of disease, which I'm very proud of, since after radiation.

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Sarah Norton she/her D33: Yeah, I was very happy to be NED. I took…

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Sarah Norton she/her D33: a oral chemo after finishing radiation, capcitabine or Xylota. I took 8 cycles of that. That was actually more difficult than I was expecting, too, and I don't know if it's just the year's worth of stuff my body went through, but that pill was really hard for me.

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Sarah Norton she/her D33: And it actually was the first time that I took time away from work, was when I was doing my Zulota. I was like, I just need to rest. So I took 6 months of short-term disability, while finishing that up.

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Sarah Norton she/her D33: And, I forgot to mention that I was treated

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Sarah Norton she/her D33: I kind of had two different results from my biopsy as far as the cancer markers, the tumor markers, because my breast was almost triple negative. It was 8% ER positive, so they treated me as triple negative, but my lymph node biopsy was ER positive.

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Sarah Norton she/her D33: and PR positive.

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Sarah Norton she/her D33: So…

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Sarah Norton she/her D33: MD Anderson's like, you're a unique case of a unique case, so we're going to treat you as triple negative, but eventually we're going to want to do something about that hormone positivity that was there in the beginning. So I did… I continued on a chemo pill for 8 cycles, finished that, and then I started the…

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Sarah Norton she/her D33: Tamoxifen, the hormone… Is it suppressor, I guess?

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Sarah Norton she/her D33: That kind of puts me into menopause, because I'm young and obviously was still getting my period, so that put me into menopause, and then I just switched from tamoxifen to letrozole, which has better proven results in some studies.

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Sarah Norton she/her D33: And I also get a monthly shot of Trell Starstar, that's a hormone suppressor. So all of that works together to address the hormone positivity that was there in the beginning.

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Sarah Norton she/her D33: And as Dr. Ozzie said, she's my oncologist at MD Anderson, she's like, we're just gonna cover all the bases. And I was like, throw it all at me.

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Terry Arnold: Right?

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Sarah Norton she/her D33: Yes, I love her so much. She's the best.

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Terry Arnold: She's terrific, and she's so into the science, and so into all the clinical trials, and things like that. Have they tested you for any, BRCA mutation, or…

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Sarah Norton she/her D33: Yes, luckily I tested negative. I do not have that, so I just was lucky.

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Terry Arnold: I'm proud of that. I have women who call me all the time and say, I'm negative for BRCA, just like you just said. But 90% of women with known breast cancer have no known mutations, so it just shows that we don't know yet. So, I always want people to feel like if they are positive, it's not a destinate,

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Terry Arnold: sometimes it just gives you the warning bell. I have no family history of cancer, and I'm from a really large family, but I'm from a family of very young people. My mom was a very young teenager, which meant my grandmother was a young grandmother, everybody was young.

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Terry Arnold: I'm BRCA positive, and we don't know where that came from. So out of my, three daughters, one, as we chose, she got the short straw, but it gives her a place to be monitored. If I'd known I was BRCA positive, I could have maybe been monitored sooner.

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Terry Arnold: Ironically, that cancer both progressed, two different cancers. IBC saved my life.

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Terry Arnold: But, you know, I think it'd be interesting for you to watch the developing science, because you're young, and you're well, and you're going to be here a long time, and maybe part of what they follow on you will help make a discovery that can help the next person.

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Sarah Norton she/her D33: Yeah, and I…

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Terry Arnold: Clicked in.

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Sarah Norton she/her D33: participate. There was a few clinical trials where, like, I could give my blood and my tissue after my mastectomy. Like, I was like, take it all, please. So, every time, I still go to MD Anderson every 3 months to get checkups, and they'll pull all of my blood for, you know, their research, because I want to be part of

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Sarah Norton she/her D33: Moving the science along.

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Terry Arnold: Well, I understand that. Well, so what is next for you?

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Terry Arnold: I think you told your story beautifully, and we haven't gotten into too much of any, like, hardship of it all. I mean, it's been a bit of a, you know, but, you know, is there anything that you feel like

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Terry Arnold: that you want to share, or if there's something that, if someone's listening, this is going through it, that you kind of want them to understand, because I always say that IBC patients are the two experts in this disease.

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Terry Arnold: We're, we're the true experts.

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Sarah Norton she/her D33: I think that… something that I learned is that hope

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Sarah Norton she/her D33: looks different at every stage, but making sure that you can hold on to that hope is really important. I know a positive mindset alone is not going to cure cancer, and it's okay to have bad days and not smile through it, but even on your hard days, to keep hoping. And I… I was actually at a

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Sarah Norton she/her D33: a retreat that MD Anderson hosted for Advanced Breast Cancer.

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Sarah Norton she/her D33: And one of the clinicians there was saying that, you know, in the beginning, hope can be, I'm hoping for a cure, and maybe hope looks like, I want to

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Sarah Norton she/her D33: keep this mastitis, or the metastases in my bones to where they're at now, or I want to find the right drug. I hope that, I can manage these symptoms, but just always trying to find the hope of whatever stage you're in.

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Sarah Norton she/her D33: And holding onto that, and not letting the disease define you.

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Sarah Norton she/her D33: So I was really trying to keep living life with my kids, and…

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Sarah Norton she/her D33: going on the trips that we had planned, and enjoying as much time as I could, even going through treatment. We actually, through this process, adopted my niece as well, who's now 14. She was 13 when we adopted her. So we didn't pause our lives because of this.

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Sarah Norton she/her D33: And I… if I could do it all again, I wouldn't change any of that. I'm so glad we got to keep living through this diagnosis, and…

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Sarah Norton she/her D33: I kind of try to balance living life normally, but then also recognizing that I have this

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Sarah Norton she/her D33: diagnosis and living life even more fully than I would if I didn't. So, trying to live more in the moment, and…

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Sarah Norton she/her D33: prioritize, you know, less work, more family, and taking those trips I want to take, thinking about, you know, I want to be in the pictures, I don't want to be taking all the pictures of my kids.

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Terry Arnold: And…

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Sarah Norton she/her D33: So it's kind of, like, thinking ahead a little bit about, like, legacy work and… but also living in the moment and thinking I have… hoping that I have many, many more years here, with my family. So it's kind of a balance of that, but…

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Sarah Norton she/her D33: I would say for people going through it, even when it's scary, something that helps me have less anxiety was actually doing kind of the end-of-life,

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Sarah Norton she/her D33: Planning, which nobody wants to talk about, but doing the will, the trust, the, you know, your end-of-life wishes, making sure all of our custody and paperwork stuff was

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Sarah Norton she/her D33: finalized. Nobody wants to do that stuff, but once it's done, and, you know, life insurance, all of those things.

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Sarah Norton she/her D33: it… now I don't have to worry about that.

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Sarah Norton she/her D33: You know, so…

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Terry Arnold: I would say that, because people, I found when I wanted to talk about if I died, a lot of people tried to shut me down.

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Terry Arnold: They were like, well, we want you to have hope. I am having hope, but that's just practical grown-up stuff, I call it.

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Sarah Norton she/her D33: Yeah.

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Terry Arnold: you know, it's something I think we need to be thinking about at any age, whether we have a cancer diagnosis or not. I don't think America does death well, we don't do grief well.

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Terry Arnold: I think we… and I think that's where support groups are very valuable, or like the women you met, there's a certain reality that we can have. It doesn't mean we're giving up hope. It doesn't mean… but also, too, I see the other end, where sometimes we're pressured, I call it to seize the day mentality, where every day we have to make a memory, every day… it's like, no.

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Terry Arnold: That's too much pressure.

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Sarah Norton she/her D33: Yes.

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Terry Arnold: And it can be a little frantic.

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Sarah Norton she/her D33: And it can really take away from what I consider true memories that your children will remember, that your wife will remember.

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Terry Arnold: And so… but there's no reason that you're not gonna live a long time now.

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Sarah Norton she/her D33: Yes.

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Terry Arnold: You've had a good response. You're under good monitoring.

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Terry Arnold: So… and I'm distracted by the paintings over your shoulder. I know that people are listening on Spotify can't see, so you can watch on YouTube. Is someone in your family an artist?

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Sarah Norton she/her D33: No, I actually bought these at a thrift store recently.

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Terry Arnold: As you can see my gallery wall behind me, all of this is thrifted, and they're beautiful. I love thrifted art, and they're beautiful.

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Sarah Norton she/her D33: Thank you. I think joy and beauty and hope and all those things.

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Terry Arnold: Are part of our legacy.

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Terry Arnold: And it's not about…

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Terry Arnold: the pressure of, you know, making a special trip or whatever, just that every day, how you live your life is a great witness. Well, how do you want to wrap this up?

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Sarah Norton she/her D33: I would just wrap this up as saying, you know, I'm a social worker, and I believe in advocating for causes that need advocating for, and I think IBC… I shout it from the rooftops to everybody that I meet, especially

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Sarah Norton she/her D33: my friends who are pregnant and things, like, really watch out for changes in your breasts. It doesn't… it's not, you know, cancer's not just a lump. It can look like, you know, this orange skin kind of effect, the dimpling of the skin, and…

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Sarah Norton she/her D33: I've learned about IBC and made myself knowledgeable, and I just want to pass it forward to as many people and women as I can, and I try to do that with women online that I meet, and other people that I've met in person at MD Anderson, and just

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Sarah Norton she/her D33: Try to help keep advocating for this.

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Terry Arnold: It's important, because you mentioned pregnancy, we're not talking about that a lot, but cancer doesn't care how old you are. Cancer doesn't care if you're pregnant, and we like to think of pregnancy as this wonderful little bubble of joy, you know, but cancer doesn't care, and it… and it can confuse,

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Terry Arnold: the situation where, you know, someone's never had a baby before, the breast is swollen, and you think, oh, this is normal, or maybe you've… even if you've nursed before, like you and me, and we've never had mastitis, we don't know. And just so people know, when you have mastitis, you'll have a full body temperature.

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Sarah Norton she/her D33: Yeah, I didn't have.

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Terry Arnold: But with IBC, just the breast is hot.

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Terry Arnold: So, you know, it's not necessarily a bad thing to be put on antibiotics for a few days,

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Terry Arnold: in the process of getting more testing, but there is a little bit of a confusion. Dr. Ueno calls it the antibiotic mystery. It's not been written about much, but where the symptoms appear to subside.

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Terry Arnold: on the antibiotic, and they go, oh, maybe this is it. But what they realize is the woman, the moment she goes off those antibiotics.

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Terry Arnold: that it blows back up. So, they don't know why that happens, but just so people know, if someone should have mastites, which is a very normal infection in nursing, you'll have a full body temperature, not just a hot breast. So that's that red flag to look at.

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Terry Arnold: But I think it's wonderful that you're sharing your experience, because I'm a big believer that knowledge is power, and women talking to women is often the first step in getting something done.

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Terry Arnold: They can say, and I know someone's going to listen to the story, and they're going to contact me, or contact you, and say.

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Terry Arnold: I had a problem, or I didn't know what to do, or I didn't know what doctor to go to, or I was scared to go to MD Anderson, or I was scared to go to Northwestern.

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Sarah Norton she/her D33: And you've made it easier.

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Terry Arnold: Thank you, you're gonna be a lifesaver.

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Sarah Norton she/her D33: Yes, you have to advocate like your life depends on it, because sometimes we'll take what the doctor tells us as final word, but you can… if you don't have a good feeling about it, keep pushing.

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Terry Arnold: That's a good way to end it. Well, Sarah, I really appreciate you taking the time to chat with us. I want to come and see you in Chicago. I want to have a meetup. Let's get these ladies together.

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Sarah Norton she/her D33: Yes. You know, I'd love to do it. I'd love to meet your family. And thank you for what you've shared today, and I hope that.

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Terry Arnold: Once the link goes live, you'll share it with your friends and family, and I'm very proud of you for taking this time to visit with us today.

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Sarah Norton she/her D33: Thank you so much.

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Terry Arnold: And I'm gonna end the recording now.