For this episode of Karger’s The Waiting Room Podcast, we spoke with Abby Match about her patient journey with breast cancer, her work as a patient advocate as well as Breast Cancer Awareness Month in October.

Abby was diagnosed with triple-negative breast cancer at the age of 35 in 2020. Being a Speech Language Pathologist in Early Intervention throughout Philadelphia County by trade, she became a breast cancer advocate after the diagnosis. Furthermore, she became a board member of the US-based non-profit organization Living Beyond Breast Cancer in 2023. Abby networks to help others get screened for genetic mutations prior to disease, engages in fundraising, and wants to be a voice for others.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

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Transcript

Hello Abby, and welcome to The Waiting Room Podcast.

Hi. Thank you so much for having me.

Now, please tell us a bit about yourself and your patient journey with triple-negative breast cancer.

Sure. I’m currently 39 years old, but when I was 35, I was diagnosed with triple-negative breast cancer, and then later found to have a BRCA1 mutation. And for those that don’t know what BRCA mutation is: It means that you’re susceptible and you’re at high risk of developing certain cancers like breast cancer, ovarian cancer, prostate cancer, melanoma, and pancreatic cancer.

So, being that I didn’t know I was carrying this, this was such a shock to receive a diagnosis of breast cancer at a young age. At the time, my daughter was going into kindergarten and my husband and I were also experiencing the pandemic like most of the world was experiencing. So, it was quite a shock to hear those words and have this shutdown going on at the same time. So, yeah. The experience was rather different than most people going through a diagnosis because I was really left to navigate this physically on my own.

I imagine that that came as quite a shock. So what did you do when you had to do it by yourself?

So, I got the news, and I reached out to three different cancer centers in the Philadelphia area, and I started going to initial visits and consultations on my own and FaceTiming or calling my husband, who was sitting at home or sitting in the garage of a hospital because they wouldn’t let him in. It was, it felt cold. It felt very isolating to not have somebody next to me, but this was the hospital policy. And here I was getting all the information to hopefully save my life. And dotting my I’s, crossing my T’s that I was hearing everything correctly and then going over it with my husband later on, who was also listening, but it was just such a strange time.

But we got through this, and I made a decision ultimately to get treated at a certain cancer center here. And once I did that, everything changed from feeling anger, grief, fear, sadness, loss, all of that. Once I stepped into this cancer center for my first day of chemotherapy, the emotions completely shifted to feeling hopeful, having connections, having faith. Everything was restored, and I have to say that that shift in that first day of my chemotherapy stays with me today, and I am not grateful for being faced with my own mortality.

But there’s something to be said about when you hear those words and you are in this situation, you find your whole self. And I know not everyone is as fortunate as I have been to be disease-free to date, and I say that because I know this isn’t possible for everyone out there, but if it’s possible and you can have this experience to live with, the contrast in this comparison of ‘Okay, I was faced with death. Here I am. Now I can look at my life and live with resilience and grit and self-love’. And it is an amazing opportunity to find yourself and what you want in life.

And it was that first day of chemotherapy for me. I never thought I would see it. I never, I don’t know, everyone has this moment at different times in their life and their experience in their journey in breast cancer. Some people might not experience that, and I have to acknowledge that. But for me, my life changed the day I walked into chemo round one.

Excellent. That sounds really, really positive and I’m sure it’s not like that for everybody, as you pointed out. But this also leads me to my next question how you experienced the healthcare system as such. Well, starting with the diagnosis and leading to chemotherapy and being in a breast cancer center.

Yeah, it was interesting. So, my journey really, although it was 2020 when I was diagnosed, I experienced symptoms in 2019. At the time I was 34, and I remember going to my well visit at the gynecologist and saying: ‘You know, I have a lot of pain on the left side of my breast. I am not able to sleep on my side.’ And my daughter, who was four at the time, would cuddle with me, like I just, it was on fire and I felt a lump in my armpit. So, I want to say the health care system didn’t deny me the investigation of what could be, but they were rather dismissive at the same time.

So, I got a mammogram, I got an ultrasound, but when all of that came back fine, I was told I just had dense breast tissue, and I got a letter in the mail stating that. So, I personally didn’t know. I just thought that was good news. I didn’t investigate it. And although it is fine news, there are still some things that could have been a jump-off from that that I didn’t know how to advocate for, didn’t really know what that meant. So, I just let it go, thinking that I would, ‘Okay, then I’m good’. So, I went on for an entire nine months, still in pain, but being told that it was probably menstrual and hormonal and, you know, scans were fine to then getting a diagnosis.

So, I often think: ‘Okay, how did I get here? Did this all grow in nine months? Was there cancer in 2019?’ Probably. And I think what could the healthcare system have done differently for me and what could I do differently for other women like me? So, here’s the answer: I’m of Ashkenazi Jewish descent. So, Eastern European, I should say. I am young. I was experiencing pain. I felt a lump, I saw a difference in my breasts. So, what should have happened at the time was somebody in that system or on that team should have said to me: ‘You need to go to get a risk assessment for genetics, and we need to put you in a high-risk category’, because of everything I just told you. So that was never, ever triggered.

And here I am, for years, my entire life, checking the box at every appointment I went to that I’m of Ashkenazi Jewish descent, not knowing why they’re asking me. I mean, they’re asking that for a reason. They’re out there. They know why they’re asking it, but they’re not telling you why they’re; well, for me, they weren’t telling me why they were asking that. So, why ask the question if there’s no follow-up? So, I want people to know their risk. And if you’re checking that box and your health care system is not asking you any further questions on that, you have to bring that up. You have to have a follow-up about that. That’s something that I did not do, and it could have been, my outcomes could have been different in the sense that I could have been detected earlier. I was detected at a later stage.

So, at the time of my diagnosis, it was a triple-negative stage 2b. So I had lymph node involvement and my tumor size was pretty large. As a result, I had more extensive treatment, which is great in my case that I’m clean and I had everything at the kitchen sink thrown at me to get there. But also, you know, treatment is harsh on your body. And if you don’t need to have all that treatment because you can find cancer earlier or get it before you get a diagnosis, that’s more ideal. So, I would say that’s where the healthcare system for me, I feel, really failed. And I don’t want to see this happening much longer to women. And it’s avoidable. It really is.

Absolutely. Now, you mentioned the effects of the treatment on your body. Did you experience any side effects of the treatment? And the second part of the question would be, relating to the positivity you mentioned when entering the clinic on day one, and that everything changed, is how did the diagnosis and the breast cancer itself affect your emotional health?

Yeah, okay. So, in terms of the physical side effects of treatment, I was really fortunate. Again, not everyone experiences this, but my side effects were pretty minimal. You know, I had this idea in my head, what you see in the movies, over a toilet, throwing up. It was not like that for me. I also have to give a shoutout to my family who allowed me the time to rest, and that was really important. And then I also have to say that having a routine and structure of being able to keep my job as a speech therapist during COVID, because there was video conferencing going on, really helped me too. I was forced to wake up, shower, throw on my wig, do some makeup, get in the chair and fake it till I make it [laughs]. I, you know, working with children, I needed to be very engaging, entertaining. And that all really helped my physical well-being.

In terms of my emotional well-being, I, yeah, when I stepped into that chemo suite and I sat down in the chair, I said to the nurse who brought over my the medication. She was in a robe, you know, she was all ready to go, gloves on. I said: ‘Oh, this must be the Red Devil.’ And that’s what I heard everyone name my chemotherapy because it’s red. And they say it makes you super sick. And she looked at me, right in the eye, and she said: ‘I’m so tired of hearing that. This is your life-saving drug. Let’s call it what it is. It’s not the devil. This is your friend, and I want you to picture this going into your body, accepting it, and seeing it kill those cancer cells. Let’s look at it that way. Let’s stop calling it the devil.’ And I was like, ‘Whoa!’, I was mind-blown. I was, ‘Thank you for that!’

And it was all of these experiences of being in the chemo suite and hearing the nurse talk to me in that way and realizing that I could believe that I was going to be okay. There was hope. This was not, for me, I’m not going to look at this as a death sentence. I’m looking at it as an opportunity to clean up my body and my life. There’s something that landed me in this spot today. There are tons of people that have genetic mutations, a high risk for cancer, familial history of cancer that don’t get cancer. So why did I get cancer? I had to look within me and figure out what landed me in this chair. And from there, it wasn’t a place of blame. It was a place of responsibility, of what I was going to do today and moving forward to live my best life.

I see, especially having a young child around too. So, how was your life after treatment, were there any post checkups and how was your life after that, and how did it affect your work and your family life, for example?

Yeah. So, after, let’s see, I had chemotherapy, a double mastectomy, 22 lymph nodes removed, radiation. I did a preventative hysterectomy because of my risk of ovarian cancer was about 65% chance of getting ovarian. And then I had reconstructive surgery. So, I would say, like, a year and a half of active treatment. And being told I was disease-free was amazing news and was my goal, of course. With triple-negative, there is a very high probability of the recurrence rate in the first five years. Really, really in the first two to three years, they say.

So they have you on a tight leash. So, it’s visiting my oncologist every three to six months and then it expanded. So, right now I just hit year four disease-free, so I am seeing my oncologist every six months. And, you know, a lot of people have trouble with the letting go and not having their hand held. And it can be very frightening. And although I experienced that at first, it’s actually really great to know that you’re getting to a place where you can confidently say ‘This cancer is not returning’. You know, you can never say never, and there’s never a 100% guarantee.

But with triple-negative, the longer you go with that recurrence, the better the outcome, and they rarely see it return after five years. Unlike other subtypes. This is a very different type of breast cancer. There’s no receptor. There’s no hormone receptor. There’s no pill that you’re taking to help your risk of recurrence after. It’s unlike any other subtype. So it’s very aggressive, very different. So, I’m at a place in my life where it’s nice to not be visiting the cancer center on a routine, you know [laughs]. Twice a year feels great.

I see. Now, having a daughter of roughly the same age as yours, how did your daughter cope with it?

Yeah, that was really, really challenging. My daughter was in preschool when she had a peer lose her mother to breast cancer, and it was talked about in the classroom because this daughter was going through, obviously, a very difficult time. So they explained to the children what was happening, and I was aware of what breast cancer did to her friend’s mother. So, I was very cautious and I had my guard up, you know, want to tell Yael that I have breast cancer. Her only, at four years old, her only association is breast cancer kills. So I was very, against like all these books that social workers were throwing out to me and people reading on discussion groups, on Facebook or wherever it was, of ‘how to tell your child that you have breast cancer’. And I’m like, no, I can’t do that. I cannot do that for my family.

So. I took it upon myself to make my own rules. And I told her and she could see it and feel it because my tumor, like I said, was fairly large, and it was not in my breast. It was in my armpit, very high up. So I had her feel it. I had her name it. So she called it Barley Boo. She gave it a name. I gave her as much control as possible. And I told her that this was something in my body that was making me sick and that I needed to go get treatment to get Barley Boo out. And I had a port placed also for my medication. So I explained that that medicine was going to help. She named that Shrinker Dinker. So, I gave her as much control as, you know, at that time she was five then, I gave her as much control and as little information as really she needed at five. You know, I didn’t, people would say that ‘kids know that you’re lying to them. They’re smart, they’re savvy. You know, she’s going to be angry if you lie’. I said: ‘I’m not lying. I just I’m telling her what she needs to know.’ We started family therapy together.

The difficulty was she wasn’t going to school. It was a pandemic. She was home. She saw me every step of the way. So. I, you know, I had a best friend who came over and did virtual school with her and kept her distracted. I had other friends who would stop by and give her a lot of attention. My mother-in-law, my mom, like. My husband was working, and with me; I mean, we were such a team to get through this. It was absolutely beautiful, incredible, and she did as well as she could. And then when I get the news that I was disease-free after my active treatment, we took a video and I sat her down with my husband and I said: ‘Do you want to know the name of that illness that I had? You know, that was causing Barley-Boo, and Shrinker Dinker helped, and I don’t think I ever really told you the name.’

And I just was very laissez faire-and inquisitive and curious and, you know, embracing her and holding her during this time. And she said, ‘sure’. And I said it was called breast cancer. And she said, ‘Ooh’, and we have this all documented, and we all cried and we all embraced each other. And it was this moment I’ll never forget, and I’m glad I did capture it. So, I just felt like I didn’t want to name it until I knew where I was in my treatment. Was I going to be on treatment for the rest of my life because I didn’t respond to treatment, or was I going to be on a different trajectory? And I’m so fortunate that I had the response I did, and I had that moment, and I’ll have many moments in my life going forward to share with my family.

Absolutely. Thank you for sharing that, Abby. That’s quite an inspiration. Now, to come to something completely different, after the diagnosis or after the treatment, at some point you started collaborating with Living Beyond Breast Cancer. How did that come about? And what does your role as a patient advocate and board member for Living Beyond Breast Cancer entail?

Yes. So, Living Beyond Breast Cancer is an amazing non-profit national organization, well known, and here I am outside of Philadelphia, and their headquarters are here. How lucky am I? I go to my first visit with the oncologist and I leave there, and I have all this information on Living Beyond Breast Cancer. I even had an email with Jean Sachs, who’s the CEO of Living Beyond Breast Cancer, and my oncologist, who was on the Board at the time, connected us. And I remember receiving this email, and remember what I told you at first, I was in the deepest, darkest place with my emotions before I got into that first round of chemo. So, here I am, leaving his office with an email of, you know, ‘Hi, you know, I’m here to connect and offer support’. And I just said: ‘Thanks, but no thanks. Not ready at the time.’

And it wasn’t until a couple months went by that I left that first round and began to find myself and see the hope that I contacted Jean back and I said: ‘Okay, I think I’m ready to talk now.’ And once I talked to her, I remember I was sitting on my bed and she gave me probably an hour of her time, and I thought, why didn’t I do this sooner? I think I know the answer, but immediately I knew I had to get involved in terms of getting the trusted information support that they offer and being a part of their community. So, I signed up for the email list, and I began going to virtual events, listening to webinars they were hosting. Again, this was during COVID, so there weren’t in-person events, but I attended everything and anything that I could. I started to go on walks with Jean outside in the woods, if we were able to do that. She would connect me with other young women in the area, going through a similar situation as me, and we would meet and go for walks, mask up and walk and walk and walk and talk and talk and talk.

And my goodness, like, yeah, I needed community. I needed connections. And when I found that and I realized how I couldn’t fathom how I was going to give back. Like, how am I going to give back to these individuals in this organization that got me through the worst time in my life? So, I began, as the world opened up, I began to volunteer. I went to speak at different events and share my story and offer support. And I became a young advocate with the organization. They do a phenomenal job teaching what advocacy is and training young advocates to go out in the world and community and share their stories.

I learned how to raise money and, you know, fundraise in a really meaningful way. And it became so natural to me. I started a hobby of beading bracelets during my treatment. And in a little over three years, I’ve raised USD 50,000 for organizations and people close to my heart in need of financial assistance. And most of that money has gone to Living Beyond Breast Cancer. That’s called ‘beading cancer together’. B-e-a-d-ING. And yeah, I just, there are not enough words to provide somebody or an organization who has changed your life. And that to me, the young advocacy, the training and then the fundraising, that is my way of giving back and will always be. And then having this honor to be on their Board and come together and help make decisions. It’s just an incredible experience that I don’t take for granted.

I see, so you’re literally speaking ‘living beyond breast cancer’ now, as the name of the organization also entails. Excellent. Now, being a patient advocate yourself: How would you value, estimate the role of patient advocates, especially when guiding other patients that are not as savvy or don’t know where to find the appropriate literature or aren’t as health-literate? How would you classify your role as a patient advocate and the need for patient advocates nowadays?

That’s right. Yeah, so I think patient advocacy can mean something different to so many people. There are individuals who are paid to be patient advocates. There are patient advocates starting to be accessible in the hospital system. There are individuals on social media who claim they’re patient advocates, and they certainly are. It just, you know, it means something different to everyone.

So, for me personally, I’m a volunteer who has been trained by Living Beyond Breast Cancer to be a patient advocate. So, I’m careful when I’m connected with individuals who come to me of how I provide information, and I do it in a very systematic way. So, they can call the helpline through LBBC to get information and resources. They could sign up to be a young advocate themselves and learn how to navigate the system and help others. But I just want to be clear that we’re, as patient advocates, we’re not telling people exactly what to do. We’re supporting people and guiding them with resources, evidence-based resources and the right people. It’s really important that people understand that too that, you know, we can’t make somebody do something. We can only give you the proper resources.

So, yeah, it depends on, that’s something too, if people aren’t sure how to get started on patient advocacy. Looking at LBBC’s approach to that is really important. It’s really important. And just being careful too, like what kind of information you take from others, because there is not always truth to everything you see on social media. And it’s not, I’m not putting blame on anyone, but there’s a lot of false information out there. So, you have to really take information carefully and always talk to your doctors or your nurse navigators or whoever before you make some informed decision.

I absolutely agree. Now, last but not least, as we are approaching the end of the interview, October is Breast Cancer Awareness Month. And this year’s theme is ‘Thrive 365’. Now, what are your thoughts on this motto and what are your own plans for the awareness month?

Yeah, so I love the name because I think what they do in October, they do all year round. And it really is, like you said, living beyond breast cancer. Thrive 365 – it’s living every day to your fullest. And how do you get there? What do you do, what actionable steps you take? I mean, we as an organization, I’m so proud to say that we can provide the tools to help people get there. The trusted information and the support is what will help people thrive 365 and, you know, there’s a lot, a lot of money given to research. And it’s so important. And I think sometimes people get mixed up that Living Beyond Breast Cancer, they’re part of, you know, research and care and they’re not. But it is just as valuable to have this organization. We need, this is what we need as thrivers, as survivors, however you want to call yourself and identify, this is what we need.

We need community. We need connections. We need the latest research out there to be broken down into information to be conveyed to us in a way we can understand it. I mean, for me, I’m not going to open up literature and be able to understand it as well as I could. If going to a webinar through LBBC and saying: ‘Okay, this is what the latest research is showing and this is what you can ask. You can ask for X, Y and Z or you need to sign up for a clinical trial’. I mean, LBBC, they are saving lives in a different capacity, in a different way, and it is such a valuable organization and meaningful and I’m just so grateful to be part of it and to see how well they do and how they grow every year to continue to serve our community.

Excellent. Thank you, Abby. Now, I think that’s a perfect ending of the interview. I love your positivity, and I’ve learned a lot today. Thank you very much for sharing your story and the very personal aspects of it regarding your daughter. I appreciate it a lot. Thank you very much. Fingers crossed that everything will continue to be fine. And thank you for making the time.

Thank you so much for having me. It was great talking to you.

Likewise. Bye-bye. Thank you.

Bye.