[00:00:00] Adam Walker: In honor of National Breast Cancer Awareness Month, if you’d like to join the Fight against Breast Cancer, please go to www.Komen.org to donate today.
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.
This is Real Talk, a new podcast series where we’re going to break down the stigmas and feelings of embarrassment and talk openly and honestly about just how difficult breast cancer can be – from diagnosis, to treatment, to living with metastatic breast cancer, to life after treatment ends.
Today, we’re getting real about the mental and emotional impact of breast cancer.
Breast cancer affects everyone differently. Whether you’re in treatment or have just completed treatment, almost everyone will experience changes. Life changes and coping with those changes may not come easy.
It is common for people diagnosed with breast cancer to experience depression, anxiety, fear and mental or emotional distress. Just talking about these experiences and the long-term challenges of breast cancer helps to normalize the lived experiences of millions of people who have been impacted by the disease.
Cati Diamond Stone is joining me today. She is vice president of community health at Susan G. Komen. Cati, taking care of your mental health and getting mental help is such a great topic. Welcome to the show.
[00:01:39] Cati Diamond Stone: So happy to be here with you, Adam.
[00:01:41] Adam Walker: I’m excited to talk about this and I’m glad that we’re, we’re dealing with some of these stigmas. I understand that you are a breast cancer survivor and you help come’s patient care services. Tell us about your personal breast cancer experience and how that helps guide your career now.
[00:01:59] Cati Diamond Stone: I am a 12 year breast cancer survivor, and I can’t believe it’s been that long, but I was 35 years old when I was diagnosed with stage three breast cancer, and because it was advanced and very aggressive, so was my treatment. I had 16 rounds of chemotherapy. Mastectomy, six and a half weeks of radiation every day.
And then about half a dozen breast cancer surgeries on the reconstruction side. And in the meantime, my daughter was 16 months old when I was diagnosed, and I was working as an attorney for a Fortune 500 company. So I have a lot of experience, unfortunately, with the emotional and mental challenges that come with a breast cancer diagnosis and that also continue to stay with us through survivorship.
But when I think about our work at Komen, how my personal experience certainly has influenced my passion for this work, but one thing that I know to be true is that my experience is different than anyone else’s experience. So we’ve designed patient care programs that can meet the unique and individual and I individualized needs of every person who’s been diagnosed because my journey is different than everyone else’s journey, and we want to make sure that we’re able to be here for everyone.
Everything that they need. It’s also really important for us to talk about those living with metastatic breast cancer because they will be in treatment for their lifetimes. And the mental and emotional strain of that doesn’t reflect my own lived experience, but I can only imagine is a really important part of maintaining good quality of life.
So it’s important that people living with metastatic breast cancer also feel comfortable reaching out for.
[00:03:41] Adam Walker: You know, I really love that, that you mentioned that because I’ve had so many conversations with so many different people, and every story is just so profoundly unique and every journey is so profoundly different, and I love that you’re, you’re customizing those solutions to help people on their own unique journeys. So I I, I just appreciate you shared that so much.
[00:04:02] Cati Diamond Stone: Well, sure. People ask me all the time about their loved ones who’ve been diagnosed and they say, What can I do for them? What do breast cancer survivors, are those in treatment, want or need? And my response every time is, have you asked them what they want or need?
[00:04:15] Adam Walker: Right?
[00:04:16] Cati Diamond Stone: Because right it’s, there is not, You can’t paint everyone with the same brush.
[00:04:20] Adam Walker: Well, I mean, it’s kinda like saying like you, you had a baby. What does your baby want and need? Like every, they’re all different. They all want something different. They’re different people, you know, they have different experiences.
So you know, we have to treat them differently. And I think the same thing in this situation. So, can you help our listeners understand the ways that breast cancer might impact one’s mental and emotional health, both during diagnosis and treatment and also after treatment?
[00:04:43] Cati Diamond Stone: So Adam, and that’s a big question, so maybe we’ll break it down into chunks. As soon as you’re diagnosed with breast cancer, you’re immediately thrown into a brand new world. You have a new vocabulary to learn. You have new people to meet, clinicians, physicians, nurses, social workers. You have to figure out how to navigate a really difficult healthcare system, and then you add to that.
The family pressures. The pressures of managing your family life, taking kids to school, to the their basketball games, and then add again onto that the pressures you normally have through your career. And it’s a lot in adding a breast cancer diagnosis and not knowing what the future will hold in terms of your treatment and survivorship is difficult.
And that is a huge emotional strain. And I feel like at this point, at least in my experience, this was when I said I’m all in. I’m, I’m ready. I’m putting on those boxing gloves, which I know is such a cliche, but it really is that mental image and I’m in it to win it. But you quickly figure out that managing your life in general was tough, but managing your life less of breast cancer diagnosis is even exponentially harder.
And something has to give. And in my experience, this was one of the first times that I woke up and really said, Wow, I don’t know how mentally and emotionally I’m going to be able to handle this, because there’s just so much and you don’t know what to prioritize first and what you can let go because you don’t want to let anyone down, not to mention your.
So I think many people will experience an immediate mental and emotional challenge just trying to figure out what the future is going to look like in an unknown world once your active treatment starts. To me, that was a turning point because I felt like I’m actually doing something now from a treatment standpoint to get ahead of this to help improve my survival outcomes, and that’s a big mental step.
It was for me and I, I’ve heard from others that it’s for them too, but once your treatment is over, In terms of active treatment, there is a huge mental shift. Again, because sometimes you wonder, and I wondered this, Well now what am I doing? Wait a minute. I wasn’t this active treatment for so long.
Now I’m not showing up and having to sit in that chemo chair. I don’t have another zap of radiation coming. What does this mean? Am I now sort of not active in the fight against breast cancer anymore? So I think one thing that people need to realize is it’s a constant evolution in terms of the emotional and mental challenges that come with a breast cancer diagnosis.
And it doesn’t end when treatment is over years later. 12 years later, it, for me, it can still come back. And we have to give each other grace and, and give ourselves grace, frankly, to say it’s okay that these emotions and challenges are coming back up and I will deal with them again in my new world, in my new lived experience, which I didn’t have 12 years ago.
[00:07:38] Adam Walker: Hmm. Now I, I love how you phrased that, that each time. There’s a mental shift that takes place, right? So there’s the diagnosis, there’s a, a dramatic mental shift that takes place, and then there’s the, the time when treatment starts, and then there’s a mental shift. Then there’s the time when the treatment stops and there’s another, like, there’s, there’s a constant shift of sort of dealing with different struggles related to each of these things.
I never really thought about that. I really appreciate you sharing that. So bringing it to your own personal experience, I understand you are a survivor, mentioned that earlier. Did, did. Can you describe to us how you’ve struggled and how you managed to get through that?
[00:08:14] Cati Diamond Stone: Yeah. Personally, I am not one to talk much about my feelings and I, I’m much more comfortable in a place where I just swallow it down and just deal with it on the inside and not necessarily talk to anyone about it. But in this case of my breast cancer diagnosis, it, there came a time where I really needed to talk to somebody, and there are a couple things that I learned.
Number one, sometimes you don’t want to talk to the people who love you the most. And the reason I say that is they cannot, no matter how hard they try, be objective about your needs because they love you. And what I learned that made me the most comfortable was to talk to a third party, a counselor that was associated with a health system where I was being treated.
I got a recommendation from the nurse navigator on the team to Congo, talk to this person. This person didn’t know me at all and was just there to listen. And it was so nice to be able to have that opportunity to talk to someone who. Could be objective and offer some suggestions. Hmm. And that was healing for me.
I know though of a lot of people who were able to talk to their spouse or their friend or in a faith based situation, maybe their pastor, and get a lot of comfort for that. So I think that’s one thing that I would challenge people to really think about is who in your circle? Can be that support for you, and then who outside of your circle can be that support for you to get that objective view that you may not otherwise be able to get from those who love you so much.
[00:09:40] Adam Walker: Yeah, that’s right. That’s right. So it occurs to me that. Related to mental health, people might not even realize that they need help. Like there’s so many other things going on, So many factors, things to worry about. Even mention yourself, you thought you were busy before, you know, get a diagnosis and, and it, it’s, it just skyrockets and so, so they may not even recognize they need help. What are some of the signs and symptoms that, that they might look for to recognize that?
[00:10:05] Cati Diamond Stone: One of the things that I saw in myself is that I was unable to juggle all the decisions that had to be made in terms of those related to my treatment, those related to the upkeep and, and nurturing of my family.
And then those related to my career. And that’s what, that was one of the triggers for me to say, Wait a minute. I need to step back and see if there’s someone who can help me sort this out. Another is just that lack of feeling of joy or your inability to find comfort in your life. Those are some of the bigger ones.
That occurred not only with me, but with others that I have talked to. We see a lot of people that will disconnect from. Things outside of their breast cancer experience because they just don’t know how to handle it. But it’s going to be different for every person. And so one thing that’s really important is not only that we recognize in ourselves what these changes are, but that those who love us and that surround us with love, also recognize it and feel comfortable enough to say, Hey.
I’ve been noticing you’ve been acting this way, or are you okay? And is there anything I can do to help you? Because in this situation, we are our brothers keeper, our mothers keeper, our sisters keeper. We have to take care of each other, and I think we need to get to this point where it’s a community conversation.
It’s not all about just you and how you feel. It’s how your community can rally around you to make sure that you’re healthy, not only physically, but also.
[00:11:26] Adam Walker: That’s right. That’s right. And, And so we’re having an entire episode here or series even devoted to mental health. Why do you think it’s so important that we talk about this?
[00:11:37] Cati Diamond Stone: I think as a culture, we don’t talk about mental health enough, and there’s been some sort of stigma attached to it for some reason, but it’s totally natural to have challenges with your mental health or your emotional health after a breast cancer diagnosis. And by the way, it’s not just the person who’s been diagnosed, it’s also the caregivers and the families surrounding them have challenges too.
But it’s important to talk about it because we want to normalize it. Let me give you an example. Back in the 1980s when Komen was first founded, no one talked about breast cancer. No one would even say the word breast out loud. And so many people pretty much suffered in silence with breast cancer because they didn’t feel comfortable talking about it.
But Komen and many others started to normalize that discussion, and now we see pink everywhere, and we associate that with breast cancer and people know what that is. We need to do the same thing with. Emotional and mental health. There is no stigma attached. There is no embarrassment attached. Life is hard.
A breast cancer diagnosis is hard. Treatment is hard. Survivorship is hard. And we need to be able to normalize it and talk about it out loud without any fear of embarrassment or reprisal.
[00:12:49] Adam Walker: That’s right. That’s so, so well put. And I really, I really appreciate that. We, we, we need to, to normalize it. It’s not a stigma, it’s not a shame.
It’s something that we can talk about. It’s something that, that everyone struggles with at some point in time and we can talk about it. So we’re in front of a decent audience here. Lovely audience. For those that are listening to this conversation, what do you want them to know and are there things that you wish you would’ve known sooner?
[00:13:17] Cati Diamond Stone: I think I want them to know, number one, to keep an eye on yourself and make sure that you’re taking care of yourself in every way. You see a lot of people that are diagnosed with breast cancer think about their physical health and they don’t always think about the mental health, and you really need them to work in tandem in order to get through the treatment in the best way possible and come out on the other side.
You know, as a happy, healthy. Person. The other thing is, as a community, we need to be there for those that are going through this disease and their caregivers who often get forgotten, and it’s really difficult for them too. So we need to make sure we’re normalizing this conversation, checking in, How are you?
What can I do to help you? Just be there for each other. And I say this all the time. Remember that the person going through breast cancer treatment is the same person they were before they were diagnosed. If you know that they love on Friday nights to go out to dinner, take them to dinner, you know, treat them differently.
Treat them as the same wonderful person they were before the diagnosis.
[00:14:16] Adam Walker: Yeah. That’s, that’s great advice. I think a lot of times that perspective shifts and we forget who people are and what they prefer, and, and we can, we can remember that and we can honor that. So well, last question. Kay. This has been so good.
What services does Komen offer for mental help? Where can listeners go if they need someone to talk?
[00:14:35] Cati Diamond Stone: We have an incredible breast care helpline at Komen that is open to anyone with concerns about breast cancer, and it is staffed by highly trained oncology social workers who speak English and Spanish, who can help you with your emotional challenges as it relates to a breast cancer diagnosis or treatment, or even just questions about when you should.
Your breast health journey in terms of getting your first mammogram or for caregivers? How do I best support those I love who are going through this? It’s a free service, and we are talking about the phone being answered by people who are empathetic, who are experts, who share the lived experiences of the people that they are serving.
And you can find our helpline at 1-877-GOKOMEN. Or you can send an email to helpline@Komen.org and I promise you, you will not regret reaching out to this team.
[00:15:32] Adam Walker: That’s right. You won’t regret it. And it, there’s never any harm in reaching out, right? There’s never any harm in reaching out.
[00:15:38] Cati Diamond Stone: There’s never any harm. And number one, they will be able to help you, but they also have a wealth of resources where they can get you to additional help and support in your community and beyond. Don’t hesitate to pick up the phone or send an email to this incredible group who really is there just for you.
[00:15:54] Adam Walker: Cati, thank you for the work that you’re doing for Komen. Thank you for sharing your story and your passion with us. And thank you for joining us on the show.
[00:16:03] Cati Diamond Stone: I always love being with you, Adam. Thanks.
[00:16:07] Adam Walker: In honor of National Breast Cancer Awareness Month, if you’d like to join the Fight against Breast Cancer, please go to www.Komen.org to donate today.
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.