[00:00:00] Adam Walker: 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.
[00:00:16] Today, we’re celebrating the 300th episode of this podcast. Over the past half decade, we’ve heard from survivors and thrivers, those in treatment, those living with metastatic disease, as well as family and friends of those who have passed and medical professionals. We’re so grateful to everyone who has come on this podcast and shared their story, helping those who need to hear it most
[00:00:40] and supporting this community. Today, we’ll revisit some of the lessons we hope you’ve taken away from this series. 300 episodes in, let’s get into it. Our first key takeaway from this series that we’ve heard a lot is trust yourself. You know your body better than anyone else. There’s a reason the phrase listen to your gut exists and a reason so many guests have shared this particular piece of advice.
[00:01:06] We have instincts for a reason. And if you’re feeling uneasy or like something is wrong, trust yourself. Here is Samantha Harris. You may know her from Entertainment Tonight, Dancing with the Stars, or one of the many various projects she’s taken on over the years. However, you may not know she’s also a breast cancer survivor.
[00:01:24] Samantha Harris: At 40, I was more fit and healthier than I’d ever been, or so I thought. And I thought I would set a baseline, get a mammogram, just make sure it was all set. My girls were just three and six at the time. My husband and I thought, let’s, you know, take advantage of great insurance and get that mammogram.
[00:01:41] And so I did, and the results came back clear, just as I had anticipated. But then 11 days later While I was changing after a workout class I found a lump and I was very surprised by it. I took charge, so I immediately called my longtime OBGYN. She did a quick clinical exam and said it was nothing.
[00:02:04] She said, you know, you’re turning 40. It’s probably glandular. This is what happens. You know, lay off the caffeine. Drink coffee every day. What do you mean the caffeine? But, oh, and then about a month later, that lump was still there and I thought, All right, I should probably get a second opinion.
[00:02:20] Let me listen to my gut and do this. But I went to see my internist because again, didn’t think it was cancer. And he did the same thing. Quick clinical exam said, it’s nothing. If you’re worried about it, we’ll keep an eye on it. And sent me on my way. And it wasn’t until four months later with that nagging in my gut.
[00:02:38] that I finally reached out to a surgical oncologist to make an appointment because I figured even though I didn’t think it was cancer I should probably go to a specialist whose sole job is to look at breasts every single day.
[00:02:52] Adam Walker: Right.
[00:02:53] Samantha Harris: And know what to look for and what kinds of tests to do and make sure that the diagnostics are there.
[00:02:58] So, I did that and at this appointment she did two ultrasounds and a needle biopsy. Interestingly, a week later when the pathology came back for that needle biopsy, she said, good news and bad news. The good news is it’s not cancer. The bad news is I don’t know what it is. So, well, let’s just take it out.
[00:03:16] And so I had a lumpectomy. And this is where choosing a doctor Who is very skilled, who’s been at it for a while, is really important, because during the lumpectomy, she took out all the cells that weren’t cancer, that she thought were not cancer at the time. Then on the margin, there was a little bit of extra, what she said she thought was healthy tissue, but something in her gut said, I just want to take this out and just run it through pathology.
[00:03:47] And thank goodness she did, because That came back as invasive cancer.
[00:03:51] Adam Walker: Samantha’s story shows the importance of trusting yourself and trusting your gut and getting that second, third, and maybe even fourth opinion. As an update, recently Samantha found a lump in the same spot she did 10 years ago. She was vigilant and got scans and more opinions and ultimately discovered a recurrence.
[00:04:12] Wish Samantha the best as she goes through this journey again. The next takeaway we have for you goes hand in hand with the first one, and that is advocate for yourself. Don’t allow anyone to sideline you in your own health journey. This story is from episode 177 of our series titled You Are Your Best Advocate with Maryann Mitchell Holland.
[00:04:35] Maryann Mitchell Holand: I first noticed a lump back in 2010. And I just kind of ignored it. And then, you know, I thought I should go get it checked out. So I went in, it was July and my regular doctor was off the female practice. And so I saw one of her colleagues and she was very dismissive and said it was nothing. She did a mammogram, nothing showed up.
[00:04:54] So I said, okay, fine, clear, clean bill of health. And so I did delay and I waited two years because I started to feel tired. And I, all I could say was this lump was like the size of a peanut M&M. And I could just felt like it was getting angry that were before it was just there. And now I’d let me know what was there.
[00:05:10] So I just had to go get a second opinion. So I went to NYU in New York City and went to Debra Axelrod and she examined it and she said, well, I really don’t think it’s anything either. And she goes, well, if you want, you can go to my radiologist, Barry Bernstein, and he can see what he says. So I went to him, he did an ultrasound and he said, I don’t think it’s anything either.
[00:05:31] And then the next morning he called me and said, you know what, something’s bothering me. No hurt, no harm in biopsy the lump. I said, okay. So he did and I had a hematoma and sure enough, it was breast cancer. And then he said, let’s do an M. R. I. And he found another spot. And I said, well, what about this other area that was close to my chest bone?
[00:05:52] And he said, I don’t really think that’s the main thing. He goes, but you know what? So far you’re batting 100. And I was right. It had spread.
[00:05:59] Adam Walker: We’ve heard similar stories to this many times on this podcast. Being told it was nothing. Not to worry, and then receiving a diagnosis after pushing for more answers.
[00:06:09] We feel fortunate that for Maryann, it worked out. Now, you might feel like our next takeaway contradicts the last two. But we still think it’s sound advice for those who have received a diagnosis and are now working with a medical team. You need to trust your team and build a relationship with them. In this episode from February of 2020, Cheryl Jernigan, a cancer research advocate, outlines her top three tips for building a relationship with your doctor.
[00:06:38] Cheryl Jernigan: This is going to be a long ongoing relationship so it’s important from the get go to build rapport and trust. Strive to make this a partnership. You’re equal partners in treating the cancer and healing you. So be open, honest, and specific about your concerns, your needs, your wants. Then create a game plan and goal for treatment you both can agree to.
[00:07:03] One that you can and will follow. If you can’t do something, let them know and why that is hard for you to do or you are unable to do it.
[00:07:12] Adam Walker: Right.
[00:07:12] Cheryl Jernigan: And keep them advised, well advised on how you are doing and what you are doing to take care of yourself. Sometimes we unwittingly are trying to do the right thing for ourselves and our bodies, but there may be supplements or herbal remedies or some other things that we’re taking to help support our body and deal with side effects that may interfere with the treatment.
[00:07:33] So it’s important. For the doctor to know what other things you were doing to help you in this journey And then finally, always come prepared. Know what you want to learn and want to accomplish in the visit.
[00:07:46] Adam Walker: This is exceptional advice. Always remember that it’s you and your medical team against cancer, not you against anyone else.
[00:07:54] All right, this next one might seem obvious, but it’s a good reminder. Your needs matter. Self care is so crucial when fighting any cancer. It’s important to take time for yourself. Emmy award winning journalist, author, and philanthropist Shaun Robinson explains this perfectly in this episode from June 2019.
[00:08:16] Shaun Robinson: You yourself deserve as much care as you give others. That would be my advice to the women out there who feel like they don’t have the time to take care of themselves. And taking care of yourself means caring for others. Being able to go to a quiet place, maybe find a, you know, a place in your apartment or your house where you can just sit and meditate.
[00:08:43] It means. making healthy choices with your diet.
[00:08:50] Adam Walker: While those are just some examples of self care, there are so many more ways to take care of yourself when facing breast cancer, especially if you’re looking after other people as you fight. I want you to remember Sean’s quote, you deserve as much care as you give to others.
[00:09:06] Our fifth takeaway is one we’ve heard countless times, accept help from your support system. It’s not always easy, But it’s essential, even if you’re extremely self sufficient and like to take charge. When you receive a breast cancer diagnosis, you need support. Shareka Allen described herself as a very strong individual.
[00:09:26] But when she was diagnosed, she quickly realized she needed her support system.
[00:09:30] Shareka Allen: You have to have a good support system to get through this. I don’t. understand or see how people could do it alone. And I’m very strong. I consider myself a very strong individual and I get through a lot of things by myself, but some days were just extremely harder than others and I needed that extra push or that extra help or someone who just sat on a bed and watched me cry, you know, just someone there in the physical being.
[00:09:57] Adam Walker: The next two takeaways relate strongly to this theme of having a support system. Our next takeaway is rely on or find a support community. There’s more support available than you realize. Between community and social media groups in today’s age, it’s easier than ever to connect with individuals who have the same interests, hobbies, and passions.
[00:10:19] This also means it’s easier than ever to connect with folks who have experienced or are currently experiencing the same or a similar diagnosis as you. A supportive community might even be closer than you think. Take this interview with Cookie Jo from January of 2022. She didn’t have any family members to help her through, but her community still rallied behind her when she was diagnosed.
[00:10:41] Cookie runs a dance studio in Texas and has built a huge community over the years.
[00:10:47] Cookie Joe: Well, one of the things that I am basically an only child I’m, like I said, I’m 70. My father’s already passed away. My mother has dementia. So basically, and I have no children, I have no birth children. So basically I’m going through this without any blood relation.
[00:11:03] And so to have the family that has chosen me and that I’ve chosen be as supportive as any, you know, blood relation could be, is powerful. But the one thing I believe too is that everything we do is a dress rehearsal for the next time. So now my kids are going to understand what it’s like to support someone that in need their parents are, of course, are just incredible.
[00:11:33] There’s a volunteer group of women at my school, about four women who, because of COVID, we lost our business manager. So they’ve been doing by volunteering daily to come to the school and, you know, just the regular administrative. you know, and of course w can come in. So they’ve g in class. So basically th their time.
[00:11:53] Well, as soon started, which is, you kn They added driving me to chemotherapy to their list of job descriptions and it’s a 45 minute drive so and the infusions are five to eight hours And they would stay with me the whole time and wouldn’t leave me because I kept saying drop me off I can be they wouldn’t leave me.
[00:12:14] So that’s the kind of community support I have. So that’s the blessings that comes from you know We just became, we are, we just are a family. We take care of each other.
[00:12:25] Adam Walker: Cookie’s story is one of many where someone going through a breast cancer diagnosis is embraced by their community and uplifted.
[00:12:32] However, this brings us to key takeaway number seven. Your community might shift while you go through a cancer diagnosis. One thing we hear a lot on this podcast is of patients finding community in unexpected places. They may have gone into the diagnosis with one community in mind, but find it’s a completely different community that embraces them during this time.
[00:12:54] Take the story of Robyn Siegel, for example. She was diagnosed with breast cancer at the age of 25. Given her young age, she didn’t feel as if her current community could support her in the ways she needed.
[00:13:07] Robyn Segal: 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.
[00:13:29] And 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.
[00:13:49] So I turned to the internet. And I, you know, I found a handful 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.
[00:14:13] I knew my story wouldn’t necessarily be what their story was, but it really helped me feel less alone.
[00:14:18] Adam Walker: While Robin still had her community support, it can be tough to relate to those who haven’t experienced a breast cancer diagnosis. Luckily for Robyn and a lot of the people we’ve had on this podcast, They found support in online communities or local organizations dedicated to the cause.
[00:14:35] Our second to last takeaway is that every cancer journey is unique and you shouldn’t compare yours to anyone else’s. In the journey that you go through as a breast cancer patient, it can be easy to compare yourself to others wins and losses, especially when you’re first diagnosed. But this journey is about you and only you.
[00:14:55] Melissa Berry, a triple negative breast cancer survivor, said it perfectly when she said on the show in January of 2020.
[00:15:02] Melissa Berry: It’s really scary. And look, there are so many different types of breast cancers and so many different stages and, you know, everyone’s experience is different. But I think for someone that’s been newly diagnosed, the one thing I would say is don’t use Dr. Google. It’s so tempting, but that is, Going down a path that is hard to get yourself out of because then you start seeing things and, you know, it could be really scary. And because every case is different, I would say, and it sounds so elementary, but listen to your doctor because, you know every case really is different and it’s just too easy to go down that rabbit hole.
[00:15:41] Adam Walker: Staying positive and maintaining a good mindset can be one of the most challenging things in the world when you’re first diagnosed. But it’s also one of the most important. Don’t get me wrong, you’re allowed to be upset, but there are many ways to stay positive through the experience as well, like setting small goals, building your community, and focusing on what you can control now.
[00:16:04] Take Busy Smith, who explained in an episode from earlier this summer how she turned her small wins into parties Making the diagnosis easier for her and her family.
[00:16:14] Bizzy Smith: It really was like, such a gift for me to get certain, to take my small successes and turn them into parties. Like, I got my genetic testing back, it turns out like I don’t have any BRCA mutation, which some patients deal with.
[00:16:32] We had a party to celebrate that I didn’t have any, you know, gene mutations that would pass on to my daughters. And then we had a party when I had the clean bone scan we had a party when I made it through surgery, you know, just like celebrating those little things in life. And a lot of it’s like fake it till you make it, put a smile on your face.
[00:16:55] Like, I don’t care, you know, if you can make someone else smile, like, while you’re going through something like this, that is, that’s, it’s a gift to you. Like you get that in return.
[00:17:09] Adam Walker: Thanks for tuning in to our 300th episode. Whether this is your first episode or your 300th, we appreciate you being here as a part of this community.
[00:17:19] Before we wrap up today’s episode, we want to share one more quote with you from one of our guests, Marianne Alexander, who joined us on the podcast after she was diagnosed with metastatic breast cancer at the age of 35.
[00:17:31] Marianne Alexander: You can do it. Just do it. Don’t give up. Don’t throw the towel in, as many people say.
[00:17:38] I know you don’t want to hear that everything will be okay, but it, because sometimes when someone says to you, like, Oh, everything will be okay. Don’t worry about it. They’re going to get through this. You’re like, How do you know? You don’t know anything. You don’t know what I’m going through right now.
[00:17:55] But they, It’s true. It will get better.
[00:18:04] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit real pink. com and. org. And 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 AJ Walker or on my blog, Adam, jwalker.
[00:18:22] com.