For more of Catherine’s journey – visit the Being Room for photos and a brief summary. Read more ⇢

Amelia: Hello everyone and welcome to our May podcast. My name is Amelia and this is how to Breast cancer at thebreastcancerguide.com.

We are joined today by Catherine who is going to be sharing her story and giving us just some great perspectives about how she has managed her journey so far…and how her family and all of the pieces that tie to this journey have really come together. So Catherine, welcome to the May podcast. We are so glad that you are with us.

Catherine: I'm happy to be here and this is an honor. So thank you. Thank you so much.

Amelia: Thank you. So tell us a little bit about how this started for you. I'd love to hear it kind of in your own words of how it started and how things are going so far.

Catherine: Sure. Yeah. So we moved back to my hometown a few years ago and last year I realized I didn't have a primary care physician. I'd found in obgyn. I've done all of that, but I wanted to find a good primary care physician as sort of a home base. And I went to see her and during my first visit she was just very thorough. We went through my whole health history and one thing that comes up often in my health history is that my mom’s side of the family has a history of colon cancer. Both of her parents died of colon cancer. So that's something I've always kept up with. I’ve been really proactive about and it's been helpful because I am prone to polyps, so I've been keeping up with that. 

And my doctor just asked if I wanted to kind of start being proactive in other areas.

I have a maternal aunt who had breast cancer about 10 years ago. And so she asked if I wanted to get an early mammogram. I didn't even know that was possible, and it really wasn't anything on my radar. I kind of got focused on the colon stuff and never thought of breast cancer being a possibility.

But yeah, I got started. I figured that the mammogram would just be kind of an easy source of peace of mind. Like: “Got it done, can move on, do it again next year”.

I went in a few weeks later and had the mammogram. Everything went well in the appointment.

But I got a call a couple days later that they had found some calcifications which I didn't know what those were. And if you Google them, they can be nothing or they can be an indication of of something worse.

So I kind of just tried to get myself to focus on the nothing of it.

And they had me come in. They wanted me to come in for a second mammogram. They weren't going to be able to get me in for about a month. And I couldn't handle that. I needed to get some information, so I switched to a different hospital system and got in the next week.

Again I was hoping: “OK this will be it, like calcifications are nothing and then I can go about my day”.

But actually in that appointment they pulled me aside and said: “you know, these are concerning to the radiologist. We'd like to do a biopsy”.

So that's when it kind of got real and went home and they were able to get me in the next day for a core needle biopsy. And so I went to that. My husband came with me, which was wonderful…'cause at that point, I started to realize I need someone there. This isn't something I'm necessarily going to be able to do on my own.

So I went in for the core needle biopsy, which is a weird experience and went home and then waited.

It's just the waiting which you start to realize is like, you know, it's it's a part of this, but it's so terrible.

And I got a call about a week later from a nurse navigator at this hospital system who had been wonderful all the way through and she told me that, you know, she had really thought it would be nothing. But it turns out that at that point, they thought that I had ductal carcinoma in situ, which is cancer that's confined to the milk ducts.

So they actually call it at that point, they call it stage zero cancer. Because it hasn't gone anywhere. And so she was very reassuring. It was a hard phone call, but just the way that she presented the information was amazing.

And she kind of went right to where my head was at work, which was like, what next? What do we do about it? She gave me the lay of the land and basically with DCIS, the two common modes of treatment at this point are either a lumpectomy followed by radiation or a mastectomy, which then I would not have radiation because all the tissue was gone.

And I talked to my husband and we kind of went back and forth and he was doing a little bit of his own, you know, reading about it, too and trying to understand…so we could kind of be on the same page. I met with my surgeon shortly thereafter and she kind of talked me through the options as well. And I came out of my meeting with the surgeon, certain that I wanted to have a mastectomy and not just a single mastectomy, but a bilateral mastectomy. 

I just felt at that point that this part has already been excruciating with the waiting and I want to do whatever I can to not be in this place again.  

We came to the point that we said we're gonna do that.

I went on a vacation with my mom and sister a couple days later because it was already planned with all our kids, and we took a road trip to Alabama. And my surgeon was like, you should go and do it…like it's not going to make a difference the next two weeks if you go. And it was a wonderful way to kind of take my mind off things.

Then while I was down there, I got a call with a surgery date, which was sooner than I thought. I thought I'd have a little more time to wrap my head around it. But I also realized once you're kind of in the machine…it just keeps moving.

So I was scheduled for surgery about two weeks later. And my in-laws mercifully came down and took our kids and brought them back to Minnesota, and I had my mastectomy on July 16th of last year.

And then yeah…I didn't do direct to implant. I wanted to do reconstruction, but I decided to…we did expanders. So I had expanders in from July until October and then in October I went back in for my second surgery and had implants put in.

And that is kind of where things stand. 

I'm on tamoxifen now to…well, I guess…I'm sorry to backtrack…after my mastectomy pathology came back with more information than I had before — that I actually did have an invasive tumor. In addition to the DCIS that hadn't been found.

And so that was a shock. 

But it also kind of drove home the fact that this was the right way to go and that this surgery was the right option.

So that put me at a stage one diagnosis.

So yeah…on tamoxifen now to hopefully keep things steady and keep things in a good place.

Amelia: It is an incredible journey. That you've shared here in terms of starting with something that was completely unrelated and that through diligence and just preventive steps continuing to find all these things.

I have so many questions I want to…you know…talk a little bit further about, but I I love that you've given us this frame of understanding to how you got to this point. And I'm so thankful that you're doing well.

Catherine: Thanks. Yeah, I'd love to be able to.

Amelia: Early on, you said you made a choice to switch the hospital where you were getting medical help. And I think it's an important point. I'd love for you to kind of give us some context as to how you went about the decision? Because a lot of times patients feel that they don't have a choice to go elsewhere. I know I hear even people having reticence to get a second opinion. And so, your decision…because the speed wasn't what you wanted it or knew you needed it to be. Early on, you kind of took control and went a different way. How did you go about that?

Catherine: You know, I had about a day of thinking, “OK, I'm just going to have to wait,” and just the more I thought about it, the more, UM, terrible that seemed. I just…I couldn't sit on this.

We have a number of wonderful hospital systems here in Saint Louis. And I think in talking with my husband and my mom, we decided to reach out to another one. It's also kind of a home base of mine (that's where my obstetrician is) and just see if there was any hope of getting in sooner. 

And I think I didn't necessarily know if I would stay with them from that point on. But how seriously they took my desire to get in sooner just automatically felt more comfortable and felt more encouraging.

And then the second I kind of got signed on with them ­— having that nurse navigator by my side — it was like a done deal. Like I'm going to be with them now for the long haul.

So yeah, I think it started with just wanting that urgency to be taken seriously and then continued with just kind of the empathy and the support that they showed me.

I'm not a person to kind of…say what I need a lot of the time. It's easier to just stay with the status quo. But I've learned…I think that was the first point where I learned…like in this process… you need to be honest about what you want and where you stand and what's going to make you feel better along the way.

Amelia: It's a huge thing because that really changed the trajectory of how you were then able to manage everything else and keep a plan of people you know, getting second opinions and also feeling that they have some say, right? Some control…because there's so little in this process that one has a say in completely. Because you're running against time. You know that there are things that are, you know, going against you and still to be able to at least have some semblance of this is the path I want to choose is a really important one.

 Then the navigation piece is another, you know, piece that I wanted to explore a little bit more. This is also something that I personally experienced. In a good way. So simple you're describing it was a favorable experience.

What are some things that you personally saw with the way that they handled this that is of help for folks that maybe don't have that option but should be looking for? You know these are the kinds of things that she said or they said that helped me with the decisions? Anything that stand out?

Catherine: Yeah. You know…I think one of the biggest things was that she let me know right away that she's been through this before. She's a breast cancer survivor. And so I automatically took everything she said more seriously. It felt so genuine and sincere. It was coming from a place of empathy and experience.

And so, I think even if I hadn't had a nurse navigator, it just kind of made me realize how helpful it would be to have someone by your side who's been through this before. Because even all the doctors I encountered along the way. 

But it just meant it took her up a notch in my eyes. Just the fact that she was speaking from knowledge and experience.

And so, I think, yeah, having someone who's been there who can let you know the resources that they utilized and what they learned — it counts for so much.

Amelia: How did you juggle…I'm always surprised that the speed of the decisions making that has to happen with a diagnosis of this nature…how did you juggle the, you know, what was here? Was your life over here? And I know you have a family and you have little ones. 

And so now all of a sudden this thing comes in that can completely take over everything. How did you start to kind of organize how you were going to tackle all of these big decisions as well as steps that you were going to be taking in the midst of all of the other things that you already had on your plate as a family?

Catherine: Sure. Yeah…I had a moment when I got that call and they said: “can you come in for surgery on July 16th?” And in my head, I thought I'd have at least until August.

And I asked him, can you move it back any further and they couldn't.

I had to take a beat. And just sort of accept that this was happening sooner than I thought.

I had imagined I'd get a summer where I could swim with my kids and do more of what we had planned on.

And so I think the first step was adjusting my expectations and then bringing people into the conversation and at that point…you know…my family knew. But we hadn't had big conversations about logistics and how this was all going to work.

So once we had that surgery date I worked with my husband, my mom, my in-laws to just say…you know…how is this going to work? What's it going to look like? How are we going to make sure that we can make this happen and have the kids taken care of? So it kind of ended up being an all hands on deck, situation.

And I think as much as I kind of felt like being private and not talking about it I had to in order for everything to work out.

Amelia: And that's a really big point because a lot of people struggle…I know I personally struggled…with how do you tell the family? What do you say? How do you say it? How was the conversation with the kids? What did they know?

Catherine: That's always so hard. And especially, too, when you're still processing it yourself.

So it's like, I can't even get to a place where I've accepted this and I have to impart knowledge and information to other people and especially my kids.

And one challenge that was kind of looming for me is that my mom had a best friend who had died of brain cancer just a few months before, and my kids were close to her. She was an important part of our broader family. And so from my kids perspective, that was what cancer was.

And so, I had to kind of step back and think, how do I explain this to them so that I'm being honest? I don't want to not say anything at all. But I don't want to scare them unnecessarily, too.

And so we did it a little differently for each kid. Our oldest is 10 and our youngest is two. So our 10-year-old, I was able to be more honest. You know I have an 8-year-old as well. “You know Mom has some cancer. I'm going to have some surgery to get it taken out. It was found really early and for that I’m fortunate. My doctor has a plan for what to do.”

And I think then seeing me kind of confident in the people who were taking care of me gave them that peace of mind that they needed to be able to go back to stay with my in-laws for a while and have a fun summer and enjoy themselves without being preoccupied by how I was doing.

Amelia: And I think for everyone watching it's that pivotal point of what do you say…how do you frame it? How do you make those determinations because we never want cause our family…I know…for me it was a struggle and I didn't tell my parents for some time because I couldn't find the right words. And so I think the fact that you're sharing that the conversation was slightly different depending on the family audience. But it was also important to at least have that context so that they didn't think something drastic had changed in their world, even though in many ways obviously there are a lot of things that have changed. But that’s hard to do. Because you're juggling also your own, as you said, processing. For me the shock for my personal story was the sequence of dates were so fast. I found out on April 26. I got diagnosed officially May 10th and the 6th of June I started chemo.

I mean, it was just as you said…I thought I had time. I thought, well, let me take a month and really, but you don't. It’s lightning fast.

Catherine: Exactly. It is. And so you're still trying to catch up with it and still trying to even believe that it's happening. And then also make sure other people around you know what's happening too.

Amelia: When you had the surgery, they then find a a tumor post-surgery as part of the surgery process. So what was their explanation as to why that had not been detected in some of the earlier scans that were done?

I often hear that happens with a lot of folks…or it's in the chest wall or what-not in so many times. People will not have surgery…they'll have the chemo or radiation and then it's found later or resurfaces later.

So tell us a little bit about that piece of how they found it and why wasn't it seen before?

Catherine: Sure. I think my understanding is that it was (and I guess I'm fortunate) very small. And so, it did not show up in my mammograms. And then because I opted for a mastectomy, I didn't have an MRI before because at that point, it was offered to me. But my surgeon was like: “at this point you already know what you're doing, it's just another thing that you could do along the way”.

So, I did not have an MRI before my mastectomy.

I think if I were going to have a lumpectomy, I would have had that MRI ahead of time. And then I think at that point, it would have been caught. But instead mine was found just during the pathology process.

So that was jarring just because I think that I'd felt so certain. And finally kind of absorbed what my original diagnosis was and DCIS kind of felt like at least it was contained. It was like it couldn't go anywhere.

And so it was a shock to know that it had. But better relief to know that it was out

Amelia: And you didn't have any symptoms that would have concerned you in any way throughout this whole process?

Catherine: No. I mean honestly, you look back and you then try to connect the dots and you're like: “oh, maybe there was something and I just missed it”.

But really, I didn't.  I look back and nursing my kids that side was always the slacker side. It didn't really do a lot of good. I mostly fed them on the other side and there's no science to that. I have no idea if that's a thing but there was really nothing. So it was just that mammogram.

Amelia: Yeah, same for me. And that's a really interesting point. There are so many folks that felt this way. It wasn't even on my radar. I know it wasn't on your radar either. And then you find something and you think: “How did that happen, right?

And so I always encourage people (obviously) to get all of their screenings, but even if there's any doubt beyond the screening to go further, because that's where sometimes we hear women that have dense breast tissue and all that. And they don't…because it doesn't feel like there's a need to. And sometimes something can be working and that's part of where you were able to uncover it so quickly.

Catherine: Yeah. It's incredible.

Amelia: So now you know, you’ve obviously gone through the process and I know you sent us some photos that we’ll share…your story of just getting through the process of the mastectomy and all that comes with that. What guidance? What worked well for you? What are some things that you feel people should know about as they prepare to go into it and also coming out of it? You know…give us what worked best for you.

Catherine: Sure. I would say for me the most helpful things…that…I mean it's terrible that it happened…but I had two high school classmates who were diagnosed with breast cancer within a few months of my diagnosis.

So they were in my all girls school. It wasn't a very big class and so they had already been diagnosed before I got my diagnosis, and they reached out to me. I was able to connect with them and message with them. I had two classmates from college who also reached out. Who had gone through this in the last few years. So just from the very beginning, in addition to my nurse navigator, I think that the best resource I had were other people who had been there. Even if our diagnosis…our experiences didn't track together…they can vary so much.

But they understood those initial feelings…that anxiety…that fear. And they were able to tell me about their experiences. Tell me what they read, what mastectomy supplies they bought and all of that was just…it was invaluable. 

And it was for me so much more helpful than digging around online and looking for random bits of information that I couldn't connect with as personally as I could with other people.

Amelia: Exactly. And it's interesting you say that because I hear that so much from people who say there's so much information out there. But even in this day and age…it's everywhere…but it's not neat and clean and depending on where you go…that might lead you in one way, or you know, it might lead you into completely a different thing or shock you…or scare you…or any of those things.

But having the right network of people that say here's what worked for me, I think that space of recovering from a mastectomy and understanding the process in its entirety is something that needs so much more information. Because I know one of the things when I was going through my own treatment process, we talked about surgery as one of the options and we decided against it because it had been metastatic and metastatic is always a little tricky when it comes to will surgery benefit: yes or no?

But even with that some of the things that you shared here are actually more, you know, far more detailed and you've given more context to what is usually kind of the top line explanation or what comes in the brochure.

There's so much more that people need to understand before they make some decision of that kind of magnitude.

So what does the path forward look like now? Now you're on a treatment plan and it's a maintenance prevention plan. What does it look like with the regularity of your check-ins and all of that?

Catherine: So my cancer is estrogen positive so for now I'm taking tamoxifen to help combat that for the next five years. I see my oncologist and my surgeon every six months. I think I see my plastic surgeon one more time next month and then barring any complications, we don't have to see each other as often.

I actually see my oncologist tomorrow. My breast surgeon helps because I won't have mammograms anymore. But I still do, you know, you can never get rid of all of that tissue — even with a mastectomy when you do reconstruction. And so she helps with exams and just making sure that there's nothing strange showing up.

My oncologist is…I think at this point a big part of her job is to listen to all my weird questions and quell my fears or help me understand something that I did end up reading online. But it's nice to have that touch point still because you don't know. I'm very lucky in how everything went for me.

Surgery is done and you're not done. You're mentally…you're still very much in it. So I can't imagine not having those touch points with my doctors every few months.

Amelia: What would have been some of the harder things, you know, going through or being on the maintenance drug? Usually there are elements of side effects and things that you've got to cope with. What has been some of the tougher ones and how are you now kind of normalizing some of those side effects? What's worked for you?

Catherine: Sure. I kind of knew what I was getting into with tamoxifen…but I also know that the side effects vary so much from person to person. I had the standard one: hot flashes 'cause, it just kind of mimics menopause in a lot of ways.

So I would say the first two months I was waking up at night, soaking wet, just sweating and it messed with my mood for a while and I noticed more hair loss than I had had just normally.

But to me it's evened out a good amount and one thing that I've learned to do is to not read any more about it. And just go by what I'm experiencing and bringing that to my oncologist. If something feels like it's too much or it's strange. Because it can have some endometrial side effects…keeping in touch with my OBGYN and making sure that she's kind of in the loop. I'm seeing her a little more often than I would have otherwise, just to stay on top of it.

It's doing good things, but it can also have some not so fun parts.

Amelia: And that's a really interesting point. I think a lot of times when patients go into treatment, you end up gravitating solely to your oncologist. I think the point you're raising is that you still have to do your other check-ins. You still have to maintain all the other things just to make sure that there aren't other issues occurring that are triggered by medications that you may not be aware of. Or that oncologists may not be looking at solely.

Catherine: Yeah, exactly. It's nice to kind of feel now that my primary care doctor — I mean she was the one that set this all in motion. And she's so attentive. And so making sure she's in the loop, too. And then it feels like you have this network of people who are all looking out for you. And it's not as siloed. I have a lot more peace of mind in that regard.

Amelia: How are the kids in the family now that you know that you’re coming up on one year from all of it, it's hard to believe that it feels like that sometimes. I'm sure other times it feels like much longer, but how have they come out the other side of this?

Catherine: They're doing well, I think at first, probably the hardest stretch for them was when they got home from their three weeks in Minnesota. I was still very much recovering and so I couldn't swim. I couldn't hold my 2-year-old who was very used to being held 'cause. he's the youngest.

So there were, I would say, a lot of adjustments out front and then again going through my second surgery. But I would say after October of last year, life has felt much more normal and it's been good because I feel like they know what happened. They know that it was a big part of our life last year but it definitely feels like we've slowly shifted back to (can't go back to where you were completely) but…we're in a good place and they're doing well.

Amelia: That's awesome. Any parting words or one or two things that you would share for, you know, a mom going through what you've gone through? Any kind of final thoughts or things that you'd like for them to know?

Catherine: I would say my two biggest things as a human and as a mom are find the people who get it. Whether it's online and Instagram. Now I've realized there's just a whole huge community of people out there.

Even if you don't have someone in your immediate sphere there are people who understand. Find those people to kind of have by your side.

And then I think as a parent, just ask for help. I think as a mom I tend to try to do as much as I can on my own. But when it comes to big things like this, you're going to have to relinquish some of that power and control for a while. Bringing more people in, whether it's family or friends or neighbors, it's just going to make the whole process.

It's going to be hard…but you can find the support you need to get through.

Amelia: And I think that those are such powerful words. Relinquish the power. I think it's so hard to do that because I always think moms are the leaders of the family. Most of the time, they're the ones that you know, they're the CEOs. And to relinquish that is really hard to do. And I'm so glad to hear you say that. That's what really allowed you to be able to jump into this and say here's how we're gonna do this.

Catherine: That's hard. And it allowed me to heal in a way that I wouldn't have been able to otherwise because you just want to get back at it. And get back to life and and you can't in these situations. And it gave me that time and that space to heal.

Amelia: Yeah. I think you are amazing. I think you've known that for some time. You know, I am so glad that you are doing so well and that this has been an incredible journey. But that you're on the other side of it and that you're able to share your story and help others that may be starting theirs right now or are going through it and maybe are having issues that they can get, you know, your wisdom and that they can use it for their betterment. So, thank you for taking the time today to be with us and for sharing your story and for being the person that you are.

Catherine: Thank you. Thanks for having me. It's an honor. I can't say that enough. It's my pleasure.

Amelia: Thank you so much, Catherine.

Catherine: Alright, see you later. Amelia. Bye!

For more of Catherine’s journey – visit the Being Room for photos and brief summary. Read more ⇢