I’m Still Here

[00:00:00] Adam Walker: This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses . Learn more at Amgen.com.

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.

Inflammatory Breast Cancer is a rare and aggressive form of breast cancer that can often be mistaken for an infection or rash.  Today’s guest went to the doctor thinking that she was simply having an allergic reaction. Luckily, her medical team was well versed in IBC and knew that what they were looking at was far more serious than a rash. 

Here today to share her story of living with Metastatic Inflammatory Breast Cancer and how she is fighting cancer every single day in order to live out her hopes, dreams, and plans is Beth Porreca. Beth, welcome to the show!

[00:01:05] Beth Porreca: Hi, thanks for having me.

[00:01:06] Adam Walker: Beth, it’s so great to meet you, and I’m really happy to have you on the show. It’s so important to talk about this because a lot of people don’t really know much about it. But let’s start off with your story. Let’s start with your diagnosis. I know it was a whirlwind.

Tell me what happened and what was going on in your life at that time.

[00:01:25] Beth Porreca: Yeah, I was 36 at the time. I had just moved a couple months beforehand to Indianapolis for a new job. So new brand, new career, brand new city, everything Was in the process of kinda just figuring out making friends, learning where the grocery store was where the photocopier was in the office, all of those things

 And at the time I had a brand new niece who had just been born and I was getting ready to go home for the holidays, a visit. And I had a rash. Then I knew my sister would. Murder me if I brought home anything that would impact the baby. So went to didn’t have an established physician at the time. So I went to just an urgent care and met with a doctor and a nurse who were amazing,

and they took a look at this weird rash. So situation I had going on my breast. And I was originally told that I had a infection in my milk glands. And I said that’s really bizarre because I have never been pregnant. I’ve never had kids that doesn’t seem right. Something about that doesn’t compute.

And so they prescribe me antibiotics and they told me to come back in, if there was continued issues, On the way out of the office, the nurse pulled me aside and she’s you just seem really nervous and upset. Is there something I can help you with? And I was like, I just don’t feel right about this.

I there’s something that doesn’t, this doesn’t make sense to me. I am healthy. I do all the things I don’t eat red need. I, what could possibly have. And none of the normal triggers are applicable to me and my current lifestyle, either from a health perspective or from just a general lifestyle perspective.

And she was like, you know what? I just had a baby and I know how you feel when you just know something’s wrong. And she’s let me recommend you to my OB by in. And I was like, that would be great. I’m new to town. I don’t. Know who to go to and she’s you’re gonna have a hard time getting an appointment she’s really popular.

Here’s what you need to say. Tell her that it is an urgent situation and that you have concerns about breast changes. And I said, oh, okay, sure. Like I do the shower thing. I check there’s no lumps or bumps or like it’s a rash, like I’m sure. You guys are all a little out there, but I do what she said.

And I got in the next day. And the O GYN was honestly with the woman who probably saved my life. She was familiar with inflammatory breast cancer, which as you mentioned, incredibly rare, it’s often diagnosed incredib late stage because. People present with this rash and either don’t go to the doctor, do what I, or do what I do and go, and Hey, we’re gonna try three or four other things because they’re not thinking inflammatory breast cancer and it doesn’t present as, oh, you have a lump or, oh, you have this or.

It was from there, honestly, that’s where the whirlwind started. I had a mammogram and the mammogram came back as inconclusive due to breast density, again, 36 years old, very young, large breasts, healthy, worked out a lot of muscle. Nothing that they could see there. So I went back to the OB, she looked again, at this point, the swelling had gotten worse.

The rash had continued to spread. I was taking antibiotics just as a backup. So clearly they weren’t working. And that’s where I learned about follow up diagnostic testing and how important that is and what that is and where you go and how you do it. And honestly, I felt at that point, like everybody in the city of Indianapolis saw my boobs.

Because it was I had to have a ultrasound. Then I went back for an ultrasound with a biopsy. Then I had to have this punch biopsy. Then I had to have another all this blood work and then I had to have an MRI and then I had to have, and fast forward to new year’s Eve. I wasn’t even thinking about.

Cancer at no point. And so I got a call from the doctor and he said, Hey, I need you to come to the hospital. I need I need you to come in. I’ve scheduled an appointment for you. And I said, okay it’s new year’s Eve. What are you guys even doing at the hospital? What do you, what could I possibly need to come for it?

 It’s already noon on year’s Eve. What’s going. And he’s I’d really prefer that you come in. And I was like can you just tell me on the phone? And so he asked me if I was alone and that’s when I felt the pit of my stomach just got, I don’t even know how to describe it. I think I was.

Out of my body. I think I just, I felt like I was floating. I, my stomach hurt. My head was just lightheaded. Like I just knew something incredibly difficult was going to happen. And so he’s are you sitting down and do you have anybody with you? And I said I’m sitting down and I don’t have anybody.

That’s I have a good network. I can call somebody if I need to. And he said, we have found, and you are suffering from inflammatory breast cancer and it is rare and it is incredibly aggressive and you need to start treatment immediately to have any chance of surviving. And I just sat there and I said, okay I will.

See you shortly at the hospital then . And so somehow I got in my car and I drove myself to the hospital. I don’t remember it was a blur and I met with an oncologist and I threw luck of the draw, ended up with the most amazing human being you could ever meet. My oncologist is just. Absolutely phenomenal.

 As a human being, as a doctor, he was familiar with inflammatory breast cancer. And so I got lucky that again, my OB was familiar with that. The initial surgeon I had, I ended up switching surgeons for my formal breast surgeon per se, but the surgeon who did the punch biopsy knew enough to say there is another surgeon in town who has experience with.

I’m happy to stay on as your breast surgeon, but I recommend you get a second opinion from her. And that’s ultimately the breast surgeon I went with. And again, through luck and through asking questions and I don’t, I can’t say enough how important it is to ask. Questions. And so that’s where I started.

I started with that night on new year’s Eve sitting in an oncology office and just listening and learning and just that date from that day forward. I remember to always bring a notebook or something because. I couldn’t tell you what we talked about in that initial doctor’s meeting. I didn’t take notes and I didn’t record it.

And so then I have to go tell my family, and they’re like, so wait, what do you have? And I’m like I don’t know. , it’s called inflammatory breast cancer. And the doctor said, I need to start. This treatment immediately if I want to live. And I, it was recommended that I get my life in order and make sure that I start preparing for worst case scenario,

and that was terrifying.

[00:10:18] Adam Walker: Wow. So I wanna understand and hear about the treatment. I understand there was a lot of urgency, and as you mentioned, it’s shocking to get called into the doctor’s office on new year’s Eve. And so let’s talk about what that looked like. I assume there was just a lot of urgency and intensity do the aggressiveness of the cancer.

 And I understand that it worked for a period of time. So then what happened next?

[00:10:46] Beth Porreca: Sure. So I started, I immediately went in for chemotherapy. So I did the full regimen of multiple types of therapy, immuno and chemotherapy all at once. I then had a bilateral mastectomy. And then for extra measure, just to be.

As aggressive as possible. I chose to have a hysterectomy just so that I could remove any potential estrogen producing entities from my body and reduce as much. As I could the possibility of recurrence after that, I then had radiation. Then when I got done with that I had unfortunately developed lymph.

 In addition to standard physical therapy, just to get used to implants and get used to having weekend. All muscles and all that stuff went through a treatment for lymphedema.

[00:11:55] Adam Walker: Wow. So now you’re living with IBC. So what does your treatment look like now? Or are you in treatment now?

[00:12:03] Beth Porreca: Yeah, I’m in treatment. So about a year after, not even about six months after my initial cancer free and I’d finished my Regime of radiation. I had significant pain in my right arm and I had lymphedema as mentioned. So I had swelling, I had pain and it just wouldn’t go away. So ultimately I had to go back in for some ultrasounds and that’s when they found that my cancer had metastasized.

 Unlike a lot of women, I was very lucky that, and not metastasize in a major organ or in my bones. Oddly enough, it. Very rare. Again, metastasized around the nerves that are in your brachi plexus. And so it actually cut off and caused my right arm to become paralyzed. And just because the tumor was so wrapped around and it’s not an area that they could safely do surgery without impacting significant loss of functionality of other important things.

So I have spent since then, I have been on either immunotherapy or chemotherapy consistently. My current treatment, I am on a combination of oral and infusions. And so I take oral medication every day and then every three weeks I go in for an and but. I think one of the things that I’ve learned as I’ve battled metastatic cancer is that there’s what they call lines of treatment.

And as you are consistently going through this treatment, you have different lines of defense. And so there’s the first treatment. And when that line of treatment doesn’t work and you present. A new form of cancer, your cancer markers go too high and indicate that there’s activity. Then you know, you move on to the next and the next until ultimately either you become You run out of treatment options you choose to stop treatment or you exhaust opportunity and you choose to try alternative therapies.

So I’m very lucky. I’m only in my third line of treatment in the last five years. So the treatment I’m on is a form of it’s called soda and text via. I hope I’m pronouncing that I jokingly call it tuxedo because there’s times when that. Doesn’t roll off your tongue. But it’s been working and then honestly you just have a ton of medication to battle the side effects from the original treatment side effects from the drug side effects from.

Know, just having loss of functionality, not being as active it’s just unbelievable. And then early menopause, like who knew, who know hot flashes are fun. And when I say that I am joking. The most awkward thing you could ever want. Like you’re in the thank God we’re in this remote environment.

So you don’t have to see me turn bright red and like literally start dripping sweat and like immediately start, like trying to get outta my clothing as quickly as possible. It’s hilarious. But zoom has saved me from that embarrassment.

[00:15:36] Adam Walker: It’s amazing. The beauty of zoom is that it’s really hard to tell a color change like that.

You don’t really see it. Which is kinda great.

[00:15:44] Beth Porreca: And then I can wear like shorts all the time. So I’m like cooler. I don’t have to worry about it’s like party on the top and like beach on the bottom. I’m ready to go.

[00:15:55] Adam Walker: I like that. You went party and beach. You didn’t go business and beach. I like that. I really like that.

Yeah. Combination. But let’s take a second. Let’s talk. Talk about. The emotions and your outlook through all of this. I know that you have blogged throughout the whole journey. In your first blog, you were talking about your diagnosis and you admit your initial response was anger, which I’m sure is something that many of our listeners can relate to.

Tell me about that and how you were able to pull yourself through to a more hopeful and positive place. What helped you to get there?

[00:16:31] Beth Porreca: Yeah, I was angry I was pissed. Like I felt like I had done all the things. I was a former college athlete. I was always very conscientious about my health. I hovered around pescatarian, like even vegetarian, like very occasionally ate red meat. I didn’t have a lot of dairy. I did all this stuff. I hit my 10,000 steps a day. I, every day consistently, like I just busted my to do that. And I didn’t understand how somebody who. Had followed the rules and was conscientious of breast cancer could just be caught so unaware.

And I think that’s where I was just so angry. Like how did this even happen? I didn’t even know about this. I didn’t even know this was an issue I should be looking for. I went and had my annual treatments. I always did that. I always did self checks and I think that anger got me through the first couple chemo treatments, to be honest, because I was just so angry.

I was like, I am not letting this change, who I am. I am not going to allow cancer to take away. My life, I’m going to continue to work. I’m going to continue to support myself. I’m going to continue to do the things I love to do. I’m going to spend time with my family. I’m going to figure out how to make this work for me.

I’m not, I’m just not giving in. I’m go. And so I think I went from Angry to like stubborn. And so I never hit that, like bitter that I think some people get to, and I’m not really a bitter person to begin with. I tend to be a much more upbeat and positive and a little bit over the top of at times or extra, I guess you could say so people tell me this.

I don’t know that I believe it, but so they say, but I think for me, the hardest part has been, and always, I think will be anytime I have a recurrence or I have a challenge or I have news, that’s not good is telling my family. And so it. Absolutely is devastating having to tell my parents and my sister.

And so I think for me, anytime I hit that’s where I have a hard time and relaying at news. I think I’ve become.

When I hear bad news anymore, sometimes it’s I it almost is oh, okay, that go figure of course of course, that eventually, like you almost in a way get used to hearing this is no longer working and we’re going to try something new. I think as a patient, when you hear that you are impacted in one way.

And for me, I hear that and I say, okay, it’s a new, I’m gonna have to learn how this. Behaves with my body. I’m gonna have to learn what the side effects are. I’m gonna have to figure out how to live my life again. And so I look at it as a challenge and as how do I figure this out and how do I make sure that I’m not giving in and again, a stubborn bullheaded approach if you will.

And, but having to tell other people and then having to answer their questions is not easy. And having to tell loved ones that it’s awful. My dad is, has always just been a rock no matter what happens in our family. Like he’s the guy he can fix it. I’ve never seen him cry. I, and he didn’t even cry through the first go round.

It was the second go round when. I saw him cry and it just, I’m getting emotional now just thinking about it. It just was devastating to me because I was making him cry and I couldn’t fix it for him and he couldn’t fix it for me. And so I think that has always been the struggle is you don’t it.

It’s not like a broken. Nail or you don’t like the paint color on your walls. You can’t just go to the hardware store, go get a manicure, go fix it physically. You have to go through these arduous treatments. And they’re not always easy. Every person that you’ve probably interviewed could tell you they own horror story.

But like it’s just it does. I think that’s where it takes a toll and that’s where I personally have had a hard time.

[00:22:06] Adam Walker: Yeah, I can imagine. So let’s talk a little bit more about your family. I understand that recently your younger sister was diagnosed with breast cancer. So first of all, how she did, and secondly, what sort of emotions were you feeling like?

What did that bring back up for you in helping her deal with that?

[00:22:25] Beth Porreca: Yeah, I, so thank you for asking my sister is doing good. She just had her first chemo treatment a couple weeks ago. And so she just lost her hair. She had some stiffness and some pain in her, one armpit, and she went in and they recommended a mess or mammogram because of my history.

She’s 39. Again, it’s inconclusive because of breast density. And she’s. She’d had two babies. She had breastfed, she’d done all the things, right? All the things I had been genetically tested and had no I did not have the BRCA gene did not have any of my genetic show that I had genetically been pretty expos to breast cancer.

So it was determined that mine was environmentally caused. So she goes, she. Ultimately is she is progesterone and estrogen positive. So she’s not her two, which is great. She was found to be stage one also. Great. So she had a lumpectomy now she’s doing chemo and then she’ll be ultimately doing radiation.

 So she’s got a little bit of a journey ahead of her and she’s handling it incredibly well. I. I’m having a background. I was an event planner for a very long time. I’m really inten. Some will say about documentation and tracking and keeping lists some, a list person. And so I have binders I keep a lot of my treatment information, so I can reference back to it and keep copies of receipts for taxes and all this stuff.

And so my sister, as she’s been going through, I’m like, oh I found this in my binder. I think it would be relevant to you. And I looked back through my notes and me, this is what I felt when I had that treatment. And here’s what the side effects seemed to be for that drug when I was . So it’s good and bad.

 I think that I’ve been through it, so I’m trying really hard are to be. There for her when she asks, but not be like obnoxious. And to honestly help her with the things that I wish we would’ve done for me. Hey, here’s an Amazon registry that people can use to send you gifts, versus like I got.

And I hope I don’t offend any of my friends. I got so many pairs of those soft, like socks. When I got diagnosed.

[00:25:12] Adam Walker: I don’t know what to buy. You just buy some fuzzy socks, obviously.

[00:25:16] Beth Porreca: yeah. Like cancer patients must need warm, fuzzy socks. Like somewhere, somebody must

[00:25:21] Adam Walker: on a blog somewhere.

[00:25:24] Beth Porreca: Yeah. Yeah. It’s logged or some cancer website was like, here’s the top five gifts like journals.

[00:25:33] Adam Walker: Yeah. And socks. We got, you don’t ever have to buy journals and socks again. You’re set. Never

[00:25:38] Beth Porreca: again, like I have more than I could ever need. And for her, we set up like an Amazon registry. And so I’ve been managing that and putting things on that.

 I know she needs like

[00:25:50] Adam Walker: that’s really smart. I don’t think I’ve ever heard a guest say that before. But why not have a wishlist? And then if you need something, people can go and look at the Amazon wishlist.

[00:26:00] Beth Porreca: Yeah. And then you feel good. They feel good. Everybody wins like Jeff Bezos. Sure.

As heck wins. Like he’s buying yachts and going to space. So he’s doing good.

[00:26:15] Adam Walker: I’m really glad that your sister has your support. And I know. That it really means a lot to her to have you to help her through this. And I really appreciate you sharing the raw and real emotions surrounding these topics because they’re so natural and normal and relatable. What do you wanna tell our listeners about the ebb and flow of emotions and feelings and how to feel them and come through them on the other side?

[00:26:42] Beth Porreca: Yeah, I think. If I were to ever tell anybody anything, it’s find your peace. You have to find a way to either forgive yourself or forgive the circumstances, or you just have to come to a place where. You are not constantly either feeling guilty, feeling angry or feeling just completely despondent and depressed.

And if you are one of those things, three things consistently ask for help and that may be different for everybody, right? Like I’m not here to tell you who to go to help for. Some people are gonna go to their priests. Some people are gonna go to a psychologist. Some people are gonna go to their best friends.

But ask don’t suffer in silence and don’t suffer alone because I think that’s where cancer can really come after you. And really put you into a downward spiral where you don’t have a positive outlook and 90% of beating it is saying positive and staying consistent. I. The other piece of advice I would give is I don’t care how hard it is.

 I don’t care if you have to have somebody help you. I don’t care. If you have to be a Walker, if you need to can get your butt out and walk every single day, it can be down the stairs. It can be around your house. It can be to the end of the driveway. It can be around your block. I don’t care, but get up and move because if you are just wallowing in.

Space where you’re not physically moving and you’re not physically taking care of yourself. Cancer will come for your dignity. That is what I’ve learned. It. Doesn’t people say that cancer is a battle and all this stuff and you know that you win and you lose and you’ve lost your fight.

 Cancer wins. When it, it takes away your dignity, cancer wins. When you don’t get outta bed, it wins. When you are afraid to let the world see you, it wins when you’re ashamed to see, let people see you maybe looking not your best and cancer comes for that. It comes your, the bodily functions are.

It just comes for that. And so for me, it’s always been about maintaining dignity and a sense of humor, even in those unbelievably uncomfortable and awkward circumstances. And I think that’s how I’ve been able to continue to. To be who I am. I’ve continued to work full time. I’ve continued to live my life.

There are some days it’s awful. There are some days that this doesn’t look the same not every day is a red lipstick and fancy hair day. Some days I literally look like hot trash, but I still get outta bed. I walk my dog I, and I make sure that on those days when I don’t feel good, I check in with somebody Hey, like I’m struggling today.

Like I could use some help.

[00:30:14] Adam Walker: Wow. That’s just so impactful. I took several notes. As you were talking, just to call out a few, find your piece, find a way to forgive yourself or to forgive the circle circumstances. Don’t suffer in silence and don’t suffer alone and cancer will come for your dignity.

Cancer wins when it takes away your dignity. Beth, that’s just, that’s profound. I’m at a loss for words. So I guess just thank you for joining us on the show today. Thank you for sharing your story for sharing your wisdom and and just thank you for all that you’re doing for this community.

[00:30:56] Beth Porreca: Thank you so much for having me. I’ve enjoyed our conversation. And I think if there’s one person who has a rash and says, Ooh, I should go to the doctor because of this, then you and I have both won today. We’ve gotta win. And by the way, today, international women history day. And this is women’s history months.

So thanks for interviewing me on such an impactful day and month.

[00:31:26] Adam Walker: I appreciate the work that you’re doing for the cancer community for your family. Thank you for taking the time to share your view with us, your story with us, and just thank you for the great attitude that you bring along with it.

[00:31:40] Beth Porreca: Yeah. Thank you so much.

[00:31:42] Adam Walker: Thanks to Amgen for supporting this podcast. To learn more about Amgen’s mission – to serve patients with a cutting-edge science-based approach – follow Amgen Biotech on Instagram and Facebook.

Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. For more on breast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter @AJWalker or on my blog, AdamJWalker.com