A breast cancer diagnosis can bring on a wide range of emotions including shock, fear, sadness, anger and grief. Metastatic breast cancer can also bring with it a higher level of anxiety and depression. These feelings are all normal. Here today to share the unique perspective that she has as a mental health professional who is undergoing treatment for MBC is Dr. Stephanie Carroll.
About Dr. Carroll
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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 diagnosis can bring a wide range of emotions, including shock, fear, sadness, anger, and grief, metastatic breast cancer can also bring with it a higher level of anxiety and depression. These feelings are all normal here today to share the unique perspective that she has as a mental health professional, who is undergoing treatment for MBC is Dr. Stephanie Carroll. Dr. Carroll, welcome to the show.
Thank you so very much, sir.
Well, I really appreciate you being here. Well, first of all, let’s just start out. Why don’t you tell us a little bit about your breast cancer journey?
Sure. Thank you. I’m so glad that my breast cancer journey started in the beginning of 2013, and this is not your normal journey that many people look at as far as sort of breast cancer exam. I actually was starting to feel physical pain. So if you could think about back injury or just sort of arthritic arthritic type pain, and that lasted for about six months to the point where I was just in such extreme pain, the doctor could figure out what’s going on. And I was getting sent to different doctors and they happened to do an MRI of my spine and it had showed an essence tumors. And so they just figured we’ll do a bone scan and actually had a bone scan 18 months prior for a heel spur. And when that goes, scan came back, it showed widespread metastasis. And so my first initial pre diagnosis was advanced stage four cancer.
And so now we’re filling in the blank of what that type of cancer was. And so what they continue to do some more schemes after finding a very small lump. They did a breast biopsy and in June of 2013, at the age of 32 years old, I was found to have stage four advanced stage four breast cancer. Since then I have undergone chemo. And then I had a double mastectomy in 2014, I was on oral chemo for several years, but I was in a state of what they call sort of pseudo remission. I paused for about nine months cause I was determined to do a marathon. And so we agreed that we were going to pass chemo for nine months. Went back on oral chemo is part of my breast cancer journey as advocacy. And I got a total hysterectomy and December of 2017 and January of 2018, I was rediagnosed as far as it had come back in my bones. So for the past two and a half years, I’ve been on several different teams. Unfortunately, they have all failed, which just means that my cancer is smart. So now I’m currently back on similar chemotherapy that I had seven years ago. That is a little bit about my breast cancer journey.
Wow. That is really quite the journey. So let’s talk about, I mean, I understand you’ve got a mental health background. Talk to us a little bit about that and how you think that’s affected your experiences as you’ve gone through diagnosis.
My mental health background is that I have a master’s degree in counseling psychology. I received that in 2007. So I have been in and out of the field for quite some time. I actually have a PhD in calcium education. So now I teach future mental health counselors, school counselors, and marriage and family therapists. So having that head knowledge was both a benefit and a disadvantage. And so, in the beginning, it was the idea of 42. So many people there are that fight like a girl and you got it, miss. And just overcoming even my initial diagnosis, I was told that I had eight to 12 months to live and I said, no, I have things to do in life. Thank you. But no, thank you. You know, I have a plan and, and so all of those were great defense mechanisms and we use that often in mental health.
And so as working with others, I was able to utilize them in my life. In the beginning. It was really great because, you know, I was able to take care of myself in that sense. And the benefit of having the mental health background in working with others and just to gain knowledge is being a mental health professional. And there are times that many people tend to not want to take care of themselves and that we started getting involved in getting invested in others. And I talk about this often with my students is the importance of self care. So self care for me, like I’m just gonna work on this one part of my life, but not realize that it affects all parts of my life.
Speaker 3 (05:37):
Wow. Wow. Yeah. Thank you, for sharing that. So what I mean, what are some of the common thoughts and feelings that a breast cancer patient might experience, and do you have any tips for them as they move through that?
And so you had mentioned in your introduction that there’s just an array of emotions that occur when someone is going in the room, anything that has, you know, a Dr. May say as far as me notice alum is that we want to do a specific screening. We want to do more diagnostic testing. There is the actual words of you have cancer and then the option plan, and this past seven years, I’ve heard so much advancement that occurs. And oftentimes there is more of terminology and jargon that that can really create sort of emotional distress. And so, you know, finding out that you know, I, I no longer am a part of who I am. And so that’s something that I have really noticed about when just talking with people is whenever we get a life altering diagnosis, there’s a part of us that will forever be changed.
I would love to tell people that cancer is not okay. Kids are, is not something that anybody wishes on someone, oftentimes we hear about what could be potential causes of cancer. People can play the blame game as Tom, you know, I, well, I could’ve should’ve would’ve, but the reality is, is that I’ve started to equate it with grief, that we go through various stages of grief. And so that’s the same that we can apply with with cancers that we lose that healthy part of ourselves and, and, and kind of take on this new identity. And, and sometimes people, it engulfs them and it just becomes a part of who they are. Some people are, are just that this is one chapter of my life. And so if I could tell, you know, anyone who is going through a breast cancer journey, that it is okay to have, you know, what we would call polar emotions.
And so it’s okay to be excited and to be frustrated, it is okay to lack and cry at the same time. It is okay to be angry and be fearful, have a sense of joy all at the same time. And so, you know, and that’s something that oftentimes when we get asked, how are you doing, how are you feeling? And, and we want to say everything that the, sometimes the polite answers that I’m okay, I’m good. I’ve learned to say that I’m not okay, but right now I’m stable, you know, that I’m okay. But right now I have a lot of emotions and that is appropriate answers to give.
Speaker 3 (08:44):
Yeah. And, and I know that when you get a diagnosis and as you’re going through treatment, there’s ups and downs, and have there been times where you’ve mentally struggled more than others?
Speaker 4 (08:56):
I go back to the odd shock of being told that at the age of 32, that I potentially wouldn’t see my next birthday, I had just turned 32 a month before. So it wasn’t like I had even, you know, lived in 32 for a long time. And, you know, there’s times in the beginning, I compartmentalized. I took that, you know, I was in the middle of getting my PhD, which is, you know, I really do say as a huge accomplishment in my life. And, you know, just that you see in that I couldn’t allow myself to sort of fall apart now, whether that was a good thing or a bad thing, you know? And then I think the strength has come when I was just able to push through the first year and really just be able to get myself to a point of what our, again, we were call it a pseudo remission has that aesthetic breast cancer.
It’s not as if we can go from stage four to stage two because you can not take out all of my bone structure that would probably not make for a very healthy human being that had given me a good quality of life. But I also didn’t take in the ups and downs that came with that first year though two and a half years ago when I was rediagnosed, knowing everything that I know, being a mental health professional, seeing all of the signs and everyone else, but not seeing the signs of myself. I had a pretty much of a falling apart, you know, and just, just breaking down and realizing that I needed to start doing what I was telling others to do. And so it was, you know, every good therapist should have a therapist. I tell others that, but the reality is, is I was probably not doing that as often as I should realizing that there are parts about me as a woman that I lost in this journey in the beginning shaped off my head.
And I was like, yay. As you can see in our meeting, I have bright pink hair that is short. And that is because this particular chemotherapies in the same family have a really strong chemotherapy of your hair’s falling out. There’s this psychological, it messes with your mind as much advocacy I had had for both getting the double mastectomy and the total hysterectomy, just as far as wanting to be able to not allow the cancer to overtake, you know, those parts of my body. You know, the reality is, is it had it hadn’t been picked up on CT scans or pet scans before. So when I had the double mastectomy, they had actually found more cancer. It just wasn’t put together in a tumor. And the same thing with my total hysterectomy is that they had actually found it in my ovaries. And it’s a loss as a woman, that those are things that I defined myself with that society defines, you know, as, as being beautiful. And that’s difficult as a, as a woman as a professional, you know, in making tough decisions, I had to do work and I had to realize that this isn’t something that’s going to go away tomorrow.
Speaker 3 (12:16):
Yeah. I think it’s important to talk about this because you know, for family members for loved ones or friends, it’s really hard to understand or know what someone’s going through or are going to go through. Now, what advice do you have for caregivers and families in order to be the best support system that they can?
Well, first I have to say just as far as family members and support system I am one lucky, lucky, blessed person. I have amazing parents been there every step of the way. You know, I have some amazing friends and an extended family that are, that are supportive, but we looked at what the word support means. And sometimes we think about, you know, lending a hand what we can do for people, what actions we can take, if I can tell family members, if I can tell friends, if I can tell anybody that knows someone and, and has that sense of wanting to do, because in our nature, we want to be able to do for others. And that’s the idea of, of being selfless and giving. Sometimes we have to think about where is that person in life. And so I say that in the beginning, for some people, it is really looking to add, do they have energy to cook?
And maybe they say things are okay, but if they know that it’s a mother who has children and a husband to say that, not asking the question, but saying, Hey you know, in our circle, in our sphere of influence, we’ve gotten together. And we, you know, we just want to bless you. We just want to, to, you know, tell you that for these days, or once a week, we’re going to set up this, you know, mail service that if it is something with, with childcare, especially now in today’s society and if people having to go through this, or just afterwards that, you know, Hey, we want to, you know, to see if we can, you know, come together and even if it’s social distancing or if it’s why don’t we, we pick a day. So sometimes it’s the thinking about it and just saying, this is what I want to do versus asking the question, because so often it’s difficult to say what I need, because I don’t know what I need.
And then also to realize that people’s emotions, people’s thoughts, people’s behaviors may not be indicative to who they are or what’s going on right now, because we all deal with this cancer journey in different ways. And so, you know, as family members, friends that if someone is angry, that it may not be directed towards them, it may be that they’re angry about the situation that they’re in. And one thing that I can say, especially to friends cause I am again so lucky that I have so many great friends and people wanting to reach out is instead of asking how you’re doing or what I can do for you, I’m stating, I know that you’re going through a lot and I want you to know that I am here reaching out and texting them or calling them writing a card and, and taking upon that action.
I have learned through my social media, I have told people that I need you to call me. I need you to text me. I need you to be able to show to be that support because I’m not good at it. You know, in, in this, especially in this part of my journey right now. And, and so I’ll give an example. I have really dry hands and feet because of the chemotherapy that I’m on. And I have wonderful friends and they got together and, you know, put some, some money. And one of the friends who lived close by brought off a gift basket and said, you know, we know that you have dry skin. So here is some oncology recommended lotion. They went and researched this themselves. I didn’t say anything, but they got me some solution. They got me some, you know, comfy socks. So I can put the lotion on the socks and it doesn’t ruin the socks. They, and they thought about it. They reached out to some other people. They knew that had gone through the cancer journey before. And so they, they took that action. And so sometimes it is not waiting for the you know, the person to reach out for help, but to reach out to them.
Speaker 3 (16:53):
Wow. That’s fantastic. I love that. It sounds like you’ve got some great friends. That’s, that’s really wonderful. So my last question, what do you want our listeners to know about mental health as it relates to breast cancer?
Breast cancer is a, it’s a physical abnormality that happens in our body. We have healthy cells that for one way shape or another, and again, I’m not a doctor. So these are the terms I use healthy cells turn into unhealthy cells when cells multiply and they become tumors. And then from, you know, breast cancer, it goes into different parts of the body. The first thing I would say is when a person says they have MBC metastatic breast cancer what that means is that that breast cancer and other parts of our body. So the fact that the breast cancer in my bone and in my liver is that it’s breast cancer. It’s not bone cancer, liver cancer. So I almost like just say that cause it’s physical. But we are more than our physical bodies. We have our emotions and we have our mind and we have our soul and spirit, you know, there’s still so, so much complexity that the world has.
And then now all of a sudden, you know, we add in this trauma that occurs on our, you know, in a person’s life and it’s not just the individual with cancer, it’s it is the family. It’s the friends, it’s the husbands and wives and children and extended family. And often times the focus is on the physical, because it’s tangible. We can see the term tumor, if you can scan, you know, and see the results. You know, medical doctors, they have plants that sometimes with mental health, you don’t see it, you know, and as a society, we don’t talk about it. As much as I know that we need to talk about it. And so realizing that, you know, that mental health is real and really at the being able to take care of our thoughts and our emotions in a healthy, productive way is just as important, or I believe more important because our mind and our body work together when we get stressed out negative things happen to our body.
But when we get excited or when we have joy or when we have a good day our, our body usually responds for all those listeners know that it’s one on one or the other that it’s both and both have to be worked on. And that the mental health often is not immediate. Many times it comes months or years after breast cancer journey. And so to know it is okay to reach out. There are so many people that want to help and want to be there, but that’s the time when we have to reach out
Well, dr. Carol, this was really great. I really appreciate you sharing your journey with us and being here and hope we can have you back on the show again, sometime now. Thanks for listening to real pink, a weekly podcast by Susan G Komen for more episodes, visit real pink.com and.org 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 at AGA Walker or on my blog. Adam J walker.com. Thanks to Lily oncology for supporting the real pink podcast. Join Lilly oncology and raising more awareness, education, more research, and more dedicated solutions for metastatic breast cancer. Together. We can do more for MBC. Join the conversation at the more for NBC Facebook page.
About This Episode
Intro and outro music is City Sunshine by Kevin MacLeod. Ad music is Trusted Advertising by David Renda licensed from Fesliyan Studios Inc.