Living With Inflammatory Breast Cancer

Episode Transcript:

Adam Walker (00:03):
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 about one to 5% of breast cancers in the U S are inflammatory breast cancer. This is an aggressive form of breast cancer with signs that tend to arise quickly. Often within weeks or months, there are some challenges of diagnosing IBC, such as the fact that it may be first mistaken for an infection or mastitis because of its symptoms. Routine. Mammography may also miss IBC because of its rapid onset. Our guest today is Sarah Demer, who is here to share her story of living with inflammatory breast cancer and to help educate us on the signs and symptoms of this rare disease in hopes that it can help other women to recognize it more quickly. Sarah, welcome to the show. Thank you so good to meet you, and I really appreciate you taking the time to be with us on the show today. So let’s start with your story. Can you tell us about your initial diagnosis with breast cancer? What was happening in your life at that time and what did treatment look like?

Sara Diemer (01:17):
Sure, sure. So this actually started back in October of 2019. It was a really happy time for us because I was pregnant with our second child at the time. And that had been something we’ve kind of been hoping for for a while. So that was great. During my pregnancy, like a lot of women, my breasts kind of began to change, so I didn’t think a lot about it, but then my left breast began to change more, a lot more. It was, it was large, it was red, it wasn’t flamed. And and it still didn’t trigger any like huge warning signs. I went to my OB and I thought I had mastitis. Maybe just kind of an early case did some antibiotics, then it go away, went back to the OB, ended up getting put in the hospital for 10 days, because then they started questioning why wasn’t this clearing up?

Sara Diemer (02:04):
So many rounds of antibiotics, many, many specialists came in and it wasn’t until who would end up being my breast surgeon walked in and I spent about two seconds looking at me and they’re like, I think you have inflammatory breast cancer. Which I didn’t even know what inflammatory breast cancer was. I never heard of it at the time. And so with inflammatory like you said, being so aggressive we really needed to start chemo. Like now. We had everything in place as far as doctors for the baby doctors for me. And we started some pretty aggressive chemo just like a week or two after my diagnosis. But on the fourth round of, of that hemo and the same night actually that I had treatment, I ended up miscarrying our daughter. And that was really hard. That has probably been the most difficult part of this entire cancer thing.

Sara Diemer (03:02):
After that, it did allow us to do some more targeted treatment that you just could not do if you were pregnant which has actually been incredibly successful. So we switched to drugs that targeted exactly what my cancer was living off of. So for me, I’m triple positive. So estrogen and progesterone and her too, which that her you one, I had no idea how important that one was when I was diagnosed, but being able to do that, Herceptin has made such a huge difference that my cancer is actually a stage of no evidence of disease right now, which is amazing for being stage four that’s that’s just about as good as it comes, but it’s been quite the journey and in quite the heartache along the way to get there.

Adam Walker (03:45):
Mm yeah, I can imagine. Wow. Thank you for sharing that with us. I can only, only imagine how tough that is. So inflammatory breast cancer is it’s one of, I think, as you mentioned, one of the rare types of breast cancer, can you tell our listeners about like, just more about what it is and what it presents as

Sara Diemer (04:03):
Sure. If anyone’s familiar with mastitis, that’s almost what it looks like. I recently was explaining to someone with an orange because you get this very distinct, like orange peel. Now your breast doesn’t turn orange, but the, but the skin of the orange and how it’s like dimpled is what your breasts begins to look like. Mine was incredibly red, it was warm to the touch. It hurt like putting a bra on became like that, that just wasn’t gonna happen. But again, all those things mimic mastitis. So it didn’t present as something being like a huge big deal. And ma maybe you’re aware that, I mean, it’s so commonly misdiagnosed, like I have not talked to another inflammatory breast cancer person that walked in and got the correct diagnosis up front, and it’s not because all of our doctors are stupid it’s because typically what’s something it presents as is what it is, and that’s not us and so much more common. So it’s one of those things that even if you think, you know, what’s going on and you start to have those symptoms, my word, like go get it checked out at your doctor. And if you don’t think that’s the correct diagnosis, then be your best advocate. Right. And get it looked at more if it’s not clearing up with antibiotics, it should kind of start to be a pretty good red flag there that maybe something else is going on.

Adam Walker (05:22):
Mm, absolutely. Yes. That’s really important and great advice. So I want to go back to something you mentioned earlier, you said that really from diagnosis to treatment beginning was just really, really quick. And in the process of your treatment, you know, you shared about losing a child. Can you, can you talk just a little bit about how you were able to process all of that? Because that’s a lot to go through at one time.

Sara Diemer (05:48):
I don’t know that I did process all of that. At that time, I had a fantastic doctor from fetal medical at the hospital. He, he was with me every step of the way. Anytime I had a concern while I was pregnant, I could call him and I could get in right away. Like he was fantastic and he gave me a speech up front, but two things really stuck with being one he’s like through this whole process, you need to be your own best advocate. You know, your body better than the rest of us. And too right now, without a healthy mom, we can’t have a healthy baby because of course the question came to me. Can we just, can we hold off on chemo? Can we not do it until, until the baby was at a viable time to be born? And his answer was in fact, actually, no, not with this cancer.

Sara Diemer (06:33):
And, but he really drilled into my head. We got to take care of mom and we got to take care of me. And I think, I think we did that. I think the doctors did that. I think my care team was great. It just, unfortunately it didn’t work out the day after I miscarried, my doctor came to see me and he looked at me and he’s like, it’s now time to switch gears. He goes, it’s not about two people right now. And it’s about one and you need to do your best to do what your doctors say, the followup with your treatment to get yourself in a good head space, because you have a husband and two kids that you want to live for. And while that can almost, almost sound a little callous, that wasn’t his heart at all. And I got it.

Sara Diemer (07:14):
And so I really switched gears to focus on what I needed to do. And it probably wasn’t until after I was done with chemo, that I began to really process the loss of our daughter. And so that just needed to happen a little bit later. And I think, I think there’s still times that that hits me because it wasn’t your normal grieving time because it was time to focus on me. And that felt a little selfish, but I think it was necessary. But then that gave space later on to, to grieve her loss and, and what she would have meant to our family or, and how we address that more with our girls too. We can have those conversations now that we’re not quite so focused on a crises with me.

Adam Walker (07:52):
Hmm. Yeah. And that’s important. It’s important to have those conversations and it sounds like you had and have an amazing doctor. So I’m very glad to hear that. And, and so I think you mentioned this earlier too, because IBC is so aggressive, about 30% of women have metastasis when they’re diagnosed. What can you share with our audience about living with metastatic breast cancer, especially at such a young age?

Sara Diemer (08:18):
Well at first I think it wasn’t even a shock. Like it was like one hit after another, I was diagnosed. We, I was pregnant at the time then, and then we found that shortly before I miscarried that I had stage four. And so like, I don’t even know that I processed that at first. It was just like, okay, that’s another thing. Got it. At this point I think, I think it’s complicated. I think you’ll have some people that do their best life. And I’m so impressed with some other women and men that have stage four cancer that they’re like, well, I’m training for my third triathlon. And I’m like, cool. I in my recliner all day. So for me, it’s been, I don’t look as second anymore. Like I have some hair back. Right. You know, so there’s more of me now, too.

Sara Diemer (09:12):
So I don’t appear as sick, but I have days that I don’t feel good. I have days that pain meds are gonna be the only thing that kind of gets me through by the end. Because there’s, for me, there’s so many different complications from the treatments. I have a pretty intense neuropathy in my hands and feet, which that’s just been, how do you find that new normal to live with? So there’s no short answer to that. To me, it’s complicated. It works different for everyone. But for me, it’s trying to find when I do have a good day doing something with that day I, before cancer, I had two jobs. I was an adjunct at college and I’m a youth group leader at my church. And I had to step away from teaching at college. It was just too much.

Sara Diemer (09:54):
I have too many bad days, but I could maintain my job at church. And so I’m having some semblance of an, of a normal life. I don’t even know what a normal life is now with everything else going on in the world, but some semblance of a normal life still getting that time to connect with my family. And when I do have energy or good, they making the best of it. And when I have a bad day understanding, it’s okay to have a bad day. And my husband’s been very supportive with that. If it’s one of those days, I have to lay in bed all day, then I have to lay in bed all day. But I guess just the good and the bad are going to come and making something of the good is kind of how we kind of look at it as a family.

Adam Walker (10:29):
I love that it’s such a, a really good perspective. And I think something you said is, you know, when you have a good day, what are you going to do with it? Right. And that, I think that those are kind of words for us all to live by. So I appreciate that. So I know you’re passionate about spreading the word that young women can get breast cancer, too. What advice do you have for our listeners about staying on top of their breast health and why is it so important?

Sara Diemer (10:56):
Oh, okay. So I, like, I think a lot of people kind of been taught about like self exams making sure when you’re of the age to go get a mammogram I am not of the age to get the mammogram, especially according to insurance. Right. That it’s too young. So, so what do you do as a younger woman? I think you need to educate yourself on the possibilities. Don’t become a worrywart with anything that could happen in everything that could happen, but at least being aware of what is out there, I’m sure gives you a better chance of catching something early on, which is just imperative with cancer. And I think a lot of us maybe, maybe y’all are smarter than me, but a lot of us, I think have this idea that cancer’s like an, like an old people disease.

Sara Diemer (11:44):
And it’s not granted when I’m at the cancer center. There are a majority of people that are older than me, but there’s plenty of young people that get cancer. And I think sometimes it’s going to get further along in our bodies because we’re just not aware that that’s really a possibility. So educate yourself, but educate yourself with good websites. That’s something I really, really want to point out. Like, don’t go read all the all the blogs necessarily, or the chat rooms because wow. You can, you can end up in some rabbit trails, but be proactive with good medical advice. And by all means, if you have a question, ask your doctor, ask your care team. Yeah,

Adam Walker (12:26):
That’s right. That’s right. So last question, and this has been so great, very inspiring, very helpful. Is there anything else that you’d like our listeners to know that you’ve learned throughout your breast cancer journey?

Sara Diemer (12:41):
I would say it would be really helpful if people that know someone dealing with cancer can be gracious. And here’s what I mean by that. Is there have been just an outpouring of support and love for my family. And that has meant so much, but sometimes I don’t know that I always respond correctly cause I’m trying to figure it out myself. When people have asked me to do things, sometimes I can almost get a sense of annoyance. I’m like I have cancer. Hello. I can’t do that. But if they don’t ask me, I’m like, hello, I’m still alive. So there’s a lot of sorting out that has to go on in the person dealing with cancer and how they’re going to do life because it is a little different. And in some ways, a lot different than what it was before. And so I don’t expect other people to always say the right things to me. There have been people that are like, I’m so glad you’re better, Sarah. Like we prayed for you. And you’re great now. And I’m like, but I’m not. I might look really good, but I’m not. So the same thing I think applies the other way. And I think a lot of people are great with this one, but how some graciousness and patience towards the person trying to sort out what’s going on in their own life, their own body while they’re dealing with cancer,

Adam Walker (13:56):
That’s really, really, really good advice. And I really appreciate your perspective on that. Sarah, this has been inspiring, very educational, and I really appreciate you taking your time on the show

Sara Diemer (14:08):
Today. Thank you. I appreciate it.

Adam Walker (14:15):
Thanks for listening to real pink, a weekly podcast by Susan G Komen for more episodes, visit real for more on breast cancer. Visit 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