[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.
Breast cancer can be overwhelming and you may face many physical and emotional struggles both during your treatment and in the months and years after. It’s hard to know what to expect. As many survivors will tell you, there is no normal when it comes to cancer. Figuring out life after treatment can be hard, feeling like yourself in your own skin can be hard, relationships might feel different, and your view of life may even shift.
Today’s guest was living a life of service and was volunteering in Rwanda when she learned she likely had breast cancer at the age of 25. She immediately returned to the US, where tests confirmed a diagnosis of stage two triple-negative breast cancer. Here today to share her story and the impact that breast cancer had on her life and her wellbeing is Robyn Segal. Robyn, welcome to the show!
I’m very excited to hear your story. It sounds very unique. I understand, like I mentioned in the intro, that you were diagnosed in a pretty unique way. So tell us about where you were and what that experience was like.
[00:01:37] Robyn Segal: Yeah, so I would say this is the most unique part of my story. I was living in Rwanda at the time. I was volunteering at a youth village out there and about six months into my time in Rwanda, I felt a lump. And I kinda just waited a month then was kind of playing it by ear, seeing if it would go away. I didn’t think a whole lot into it. But after a month went by, I decided I should probably get it checked out.
My maternal grandmother did have breast cancer. She’s the only one in the family. But it was something I had in my mind. So luckily I had some connections in Rwanda who were able to help me navigate the healthcare system there. And I showed up at a diagnostic clinic and asked for an ultrasound you know, one thing led to another, I had a biopsy in Rwanda and they couldn’t formally diagnose me.
So they kept saying it was suggestive of breast cancer, but it was inconclusive. So at that point I knew I was going to have to leave. They still sent away an additional sample for additional testing. But again, it was inconclusive, suggestive of breast cancer. So I kind of left Rwanda with this I think I have breast cancer type of situation which is a very strange place to be.
And yeah, I was working at a youth village out there. So while many would think that would be a very shocking diagnosis and I would have a lot of feelings about it. I was in logistics mode. I had not a lot of time to figure out who was going to take over my responsibilities? How was I going to tell all of the kids that I was working with?
All of the teens that I was working with? And not further traumatize them, because they all came from very vulnerable backgrounds with a lot of traumatic experiences in their past. So how do I go about doing that? So I really wasn’t thinking about myself for that period of time. I was really focused on them.
And it wasn’t until I got home that I started figuring out my own life and what that would look like for me.
[00:03:42] Adam Walker: Wow. I mean, that is, I can’t even, I mean, I can only imagine that knowing you likely have, it is pretty, pretty shattering, I guess. Maybe that’s the best way to put it. But knowing that while you’re out of the country and trying to figure out logistics for everyone else is wow.
That’s, that’s profound. So, so you get back to the States and what happened next? You started treatment? Or what happened?
[00:04:06] Robyn Segal: Yeah, so I went back to live with my mom and while I was sort of figuring out things in Rwanda, my mom had been trying to get me an appointment with a breast cancer specialist near her, so kind of twofold attack.
So by the time I got home, I think I got home on a Monday maybe. My first appointment was on a Thursday. And basically ahead had an initial consultation and I brought them all of my documentation from Rwanda, the scans, the biopsy, inconclusive results and everything. And they basically said, listen, we’re going to have to go through the diagnostic process all over again.
This isn’t good enough. We need to figure out what’s going on. So that led me to another biopsy. Another lymph node biopsy, which I actually didn’t have the first time. But they were able to formally diagnose me the day after my biopsy. Whereas in Rwanda initially, they told me it would have taken over a month to diagnose me or to give me the results of the biopsy.
And with some finagling, we got it down to about a week and a half. But yeah, so the difference in the diagnostic process was something that really stood out to me as well from a public health perspective.
[00:05:17] Adam Walker: Wow. So what were your emotions when you finally got back? And what were the emotions of your family like? And just kind of, what was it like sort of dealing with all of this at once?
[00:05:30] Robyn Segal: I think my family had a lot of the same reactions as I did in terms of just trying to figure out logistics because they needed to help me from their side of things to just get things going, figure out next steps. I think that there was a bit of relief on all sides when we actually had a formal diagnosis because that at least gave us some answers.
And at that point, I first felt the lump the end of April and I wasn’t formally diagnosed until mid July. So it was quite a bit of time of uncertainty and wondering, and that, that can be kind of the most difficult part, I think.
[00:06:09] Adam Walker: Yeah. I mean, not knowing is, is really so, so difficult. I think I’ve had them, a lot of people talking about that on this show. So, so you went from Rwanda volunteering to help youth to back to the States figuring out your health. Your life changed significantly before and presumably after breast cancer. Tell us about what that was like.
[00:06:36] Robyn Segal: Yeah. I mean, I had spent the few, I don’t know, five or so years prior traveling, living abroad, whether it be studying or, or doing service programs.
And so I was, I was really living this life sort of a free spirit. And I was kind of forced to go home live at home. I wasn’t able to really progress in my career in any way or do anything meaningful when it came to service. Because I really did have to focus on myself, which did not come naturally to me.
I prefer focusing on other people. So it was a lesson in being humble and accepting help. And you know, I’m, I’m so grateful that I have a great support system, family and friends in the area. Who were able to help me through. But yeah, I mean, I was home for about 10 months and it was really challenging to focus on myself and to not be able to progress in my career when everyone around me was.
You know, friends were progressing in their careers, they were getting engaged, they were getting married, some were having kids. And I was, you know 25, turned 26 years old, and I was stuck at home and I was going through cancer treatment and I was just stagnant and had no idea what the future would hold. So I kind of had to put my life on hold and felt like I was in limbo for, you know, the whole period of treatment.
[00:07:53] Adam Walker: And I mean, that’s just gotta be such a struggle for you that just that profound shift in lifestyle and in trajectory and everything else. And so I’m curious, I mean, did you struggle more during treatment? Or was it more difficult after treatment was done and sort of figuring out what’s next?
[00:08:12] Robyn Segal: So that part’s really interesting. Because during treatment, the treatment itself, I feel, I felt like I handled pretty well. I didn’t realize it at the time I was in survival mode. I’m very much a logical person and so I knew that I had very little control over the situation. Whatever the doctors told me to do, I had to do. You know, I had no control over whether the chemo worked and the medications worked and, you know, I could only sort of try to focus on my mental health and my physical health and in terms of diet and exercise.
But I didn’t have a whole lot of control. So, I really just kind of went with the flow. And the hardest part was that sort of struggle of where my life was at. Aside from cancer, just having to be stagnant and feeling like I just wanted to, you know, jump on a plane and go somewhere. Or go back to Rwanda, which was really hard for me.
But actually after treatment, you know, I expected my life to go back to normal, whatever that meant. I truly went into cancer treatment thinking that it was all temporary, it was stage two, I would have my treatment, the treatment would work, at the end of treatment I would be fine, and I would get on a plane and go back to Rwanda or wherever I, you know, chose to be.
[00:09:24] Adam Walker: Sure.
[00:09:25] Robyn Segal: That is not at all how it played, played out. I mean, I’m lucky in that my treatment did work and, you know, I was able to move forward after about 10 months. But, I didn’t quite realize the emotional aspects of it, where I would fear recurrence, which I didn’t expect to. I knew I would have scans every six months, which kind of made it challenging to be able to live abroad where I couldn’t afford to go back to the US for scans every six months. And on top of that, if I had a recurrence, you know, being abroad, I’ve already experienced that once. I wasn’t really keen on experiencing a diagnostic process in a foreign country again.
[00:10:05] Adam Walker: And then again, when you get back to the States, right?
[00:10:08] Robyn Segal: Right, exactly. So all these things kind of played a role. And so I kind of felt like I was forced into staying in the US. Which wasn’t a bad thing necessarily it just wasn’t quite what I had in mind for myself. You know, I came from a public health international development field, and a lot of the work in the US is headquarters-based and it’s office-based.
And I was more hands on the ground. I didn’t care if I made money, as long as I felt like I was having an impact and being able to serve other people, that was really fulfilling for me. So it was a really big mindset shift for me. And I struggled, I struggled significantly more in those first few years after treatment.
[00:10:47] Adam Walker: So, so how did you work through that? I mean, how did you cope with that profound shift in sort of your expectations and trajectory?
[00:10:57] Robyn Segal: I feel like in the beginning, I didn’t cope very well. I didn’t quite have a grasp on what was happening because I was just focused on the next step and figuring out, just getting back to normal, starting a new job.
I moved from Florida to Washington DC and you know, started a new job and figuring out all these pieces. All the while my mental health started to take a toll you know, the sort of aspects of life of readjusting to normal life. How do I relate to my peers, when I had just gone through this experience? How do I start this new career while I’m still kind of playing catch up from cancer? And the toll that it took on my body and my, my health.
And so in the beginning, I really, I didn’t realize how much I was struggling. I was just pushing through. And then things started to get a little worse and get a little worse until I got to a point where I was forced to say to myself, you know, something’s not right.
And so it took a while, it wasn’t. Because I never struggled with my mental health before. So it took me awhile to recognize the signs in myself and say, something’s not right. I think I need to see a therapist. I think I need to get some outside support. So that was a whole process in and of itself where I ended up seeking therapist for support and that helped a good amount.
But it wasn’t everything for me. So, you know, I had a handful of months, maybe six or so, six to eight months where I was doing talk therapy which would help, but not to the extent that I needed it to. So I still considered that period of time somewhat untreated depression. Which I didn’t realize at the time. I wish I would’ve started antidepressant therapy sooner.
And it wasn’t that I was against it. I didn’t realize that I needed it. I didn’t quite understand. I thought, you know, I’m just figuring out the pieces and I’m you know, seeking, you know, I’m, I’m talking to my therapist, and I’m working through things, and it just takes a long time. But it got to the point where I wasn’t progressing the way I felt like I needed to.
I wasn’t coping with everyday life the way I felt like was, I don’t know, making progress? I was really struggling day to day and I talked with my therapist and you know, my team of doctors and you know, we decided the next step is, is to start medication, which really is where I started turning the corner.
[00:13:26] Adam Walker: I’m very glad that you got the help that you needed, and then when the help you were receiving, wasn’t the right help, you got even more of the help you needed. That’s so important and being able to advocate for yourself in that way is just so critical. So I understand that you’re the first person I’ve interviewed in two categories.
I think you’re the first person I’ve interviewed that had sort of an initial quote, an initial quasi diagnosis out of the country. And I think you’re also the first person I’ve interviewed that started a relationship during treatment. Is that correct? And if that’s true, I would like to know more about that. What was that like?
[00:14:02] Robyn Segal: Yeah, that was, that was pretty wild and very unexpected. I met my now husband two weeks after my first chemo treatment. So it was very early on in my cancer experience and my hair was falling out on our first date. And he was just a trooper. He handled it very well. Two days after our first date is when I shaved my head.
And you know, in the beginning I thought, I don’t know if this is a good idea. Like, I don’t know what to expect with cancer yet alone, like navigating a new relationship. And you know, it’s very complicated and very vulnerable. But I think the way that he handled a hair falling out on the first date and me shaving my head two days later and just how open and supportive he was in the very beginning, knowing that I had cancer from the moment we met. It made it easy to trust him and just to say, you know what, why not?
You know, we’ll check in with each other along the way. I, you know, I made sure to try and find the right balance of how much I’m, you know, relying on him as a support versus just letting it be a new relationship. So we kind of found that balance. And I always checked in and said, is this too much for you? You know, just want to make sure, you know, if you need to take some time or step away, like, you know, I would totally understand. But he was in it, you know, he never hesitated and you know, it was just there.
You know, to whatever extent I needed him and, you know, his viewpoint on it is he was my escape from cancer. Which was really nice. So, you know, when I was with him, sure I had all my side effects and I was still, you know, dealing with a variety of things, but we would set up our hammocks in the park and read, we would go kayaking or camping or you know, just live normal life, which was wonderful. And I think really good for my mental health along the way and physical health probably.
[00:15:56] Adam Walker: That’s beautiful. That’s beautiful. He sounds amazing. And so I also understand that you’re currently trying to start a family. Tell me about that and how your breast cancer experience has affected that journey.
[00:16:10] Robyn Segal: Yeah, that’s been very interesting. So in the very beginning, you know, before treatment, I was given the option of doing egg preservation. And because I had already, you know, it was April, end of April when I found the lump and I didn’t even get my diagnosis till mid July. By the time I had even like considered that and we had been in the talks, it was already August.
I was too nervous to delay treatment, even if it was just a couple of weeks, because I had already been sitting with cancer that I knew of since April. And I just was very nervous about any consequences that would come of that. So, I chose, and the funny thing is at that point, I was like, oh, I’m single and I’m not a hundred percent if I want kids.
So I’d rather not risk my life for it. Two weeks later, I meet my husband. But yeah, so I chose not to preserve my eggs before treatment. So I knew that my fertility may be affected by treatment and he knew as well. So once we got married and decided to start thinking about, you know, starting a family, we knew I may be at a disadvantage to begin with.
So we immediately just went to the doctor to get sort of baseline testing, to see where I was at. And that baseline testing immediately referred us to a fertility clinic because essentially the cancer treatment that I had aged me reproductively. So I was 30 when we started testing and they said, reproductively, I was about that of a 38 to 40 year old.
So, you know, still possible, so absolutely possible to get pregnant and have a family. But given, you know, my situation and some other factors, you know, we did seek the help of a fertility specialist and they sort of recommended going straight into IVF and basically giving us the best option of being able to have a biological family.
And in addition, if we want more than one biological child, it sort of gives us time. And so we weighed our options and decided to do that. So we actually did four rounds of IVF and kind of on the front end, decided to get as many embryos as we could. And then, kind of go from there. So we had one failed embryo transfer sort of after all of those retrievals, when we actually started trying in that respect took some time off, and I’m actually pregnant now.
I’m actually, yeah, 15 weeks pregnant and not through IVF, which is sometimes happens and I’ll take it as a win.
[00:18:49] Adam Walker: Wow. That is really exciting.
[00:18:52] Robyn Segal: Yeah, it’s been, it’s been wild. So we’re really excited about it. And you know, IVF is great. We still have, you know, our embryos left. The ones that we didn’t use and that’ll be great if we decide we want to have a second or a third biological child at any point in our life.
So yeah, life has a funny way of playing out and you can never predict anything. But we’ll take the win.
[00:19:15] Adam Walker: Life does have a funny way of playing out, but I would venture to say that some of your twists and turns are very, very unexpected. So so, so wow, Robyn, I mean, your story is amazing. Your outlook is, is just amazing.
Last question, what advice do you have for our listeners that might be afraid of unknowns? Or struggling with many of the same things that you’ve struggled with?
[00:19:38] Robyn Segal: You know, in the beginning, when I was first diagnosed, it was really hard for me feeling isolated and alone. I was 25 and there’s not many 25 year olds diagnosed with breast cancer.
And so when I would try and find other people’s stories to see kind of learn what to expect. I didn’t have friends or family who I could turn to who had experience with it. So I turn to the internet. And I, you know, I found a handful of, of blogs and of, you know, people’s stories that kind of resonated with me. That were, you know, people on the younger side of things.
And that really helped me to just get a feel for what to expect in the coming months how other people handled it or, you know, just some of the unexpected. I knew my story wouldn’t necessarily be what their story was, but it really helped me feel less alone. And that was sort of how I came, you know, five years later now.
I’m part of my journey, I’ve actually decided to share my story as part of that, because I know how important that was for me in the beginning. So, you know, I recently started a blog so that, you know, it was therapeutic for me as well, being able to kind of relive it and, and work through my emotions, and sort of write all of these crazy experiences that I’ve had.
But also in, in hopes that whether it be from a practical breast cancer experience, or a mental health side of things or just sort of living life side of things, you know, any way I could help someone else. That has been very meaningful for me taking experience. So I would say, you know, find resources. Whatever it may be. A blog, family and friends for support, social, you know, supports in any way. Kind of be self-aware as much as you can and honest with yourself, if you need to seek help, if you need a therapist, if you think you need to be you know, on antidepressants or anything. You know, be open to whatever may, support groups, whatever may be able to support you along the way.
There’s no right or wrong way to handle breast cancer. But there’s plenty of support out there. And the more you are seeking those resources, hopefully the easier it’ll be for anyone.
[00:21:44] Adam Walker: Well, Robyn, that is fantastic advice. I could not possibly add anything to it. It was just fantastic. Thank you for taking the time to share your story with us today and thank you for joining us on the show!
[00:21:55] Robyn Segal: Thank you so much. I really appreciate it.
[00:21:59] 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.
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.