Breast cancer is not a one-size-fits-all disease – each patient’s experiences, perspectives, and diagnoses are uniquely personal. Understanding this can help empower breast cancer patients to educate themselves and ask questions in order to equip themselves for conversations with their doctors about treatment plans. Here to share their stories and what information was most helpful to them in navigating their early breast cancer journeys are Janet Jordan and Bridgett Spillers.
As the daughter of a nurse, Janet was taught at an early age to stay healthy and out of the hospital. Her mother emphasized that as a Black woman, quality healthcare isn’t guaranteed. Janet took that advice to heart and stayed active as a dancer and athlete throughout her life. Today at 38 years old and working as a middle school counselor, Janet continues to prioritize wellness. So in May of 2019, when Janet was diagnosed with HER2-positive breast cancer, her mother’s words haunted her. Upon meeting with her oncologist, Janet immediately voiced her concerns and advocated for herself at the onset of planning her treatment. As a result, Janet has built a strong relationship with her doctor and found a treatment plan that works for her and her unique needs. Today, one year after her breast cancer diagnosis, Janet continues to receive Kadcyla to treat her breast cancer and stays active by playing with her recently adopted a puppy.
After watching her mother battle ovarian cancer, 41-year-old Bridgett knew first-hand the importance of advocating for her own health. Thankfully, she made a point to do so when she herself was diagnosed with breast cancer not once, but twice. On her first experience, she took a test and was relieved she was negative for the BRCA gene. But just two months after what she thought was the all-clear, Bridgett was diagnosed with HER2-positive breast cancer. She received treatment and underwent surgery. Two years later, she noticed a small lump and learned her breast cancer had returned. Bridgett had another surgery and received a regimen of targeted medicines. Today, the nurse practitioner and mother of three is healthy and serves as a mentor for women newly diagnosed to teach them how to be empowered when facing a cancer journey.
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 is not a one size fits all disease. Each patient’s experiences, perspectives and diagnoses are uniquely personal understanding. This can help empower breast cancer patients to educate themselves and ask questions in order to equip themselves for conversations with their doctors about treatment plans here to share their stories and what information was most helpful to them in navigating their early breast cancer journeys are Bridget Spillers and Janet Jordan. Welcome to the show!
I’m so excited to have two people on the show. This is going to be great. And to start off, just tell me a little bit about your breast cancer journeys. How did you learn you had breast cancer and what type of breast cancer were you diagnosed with?
So I guess at the age of 37, I was about to take a shower when I, and I had itch on the back and as I was bringing my hand around, well, I just felt something. And I was like, Oh, well, wait a minute. What is that? After further, you know, inspection and filling around, I’ve noticed that I felt a lot, you know, I’m also a nurse practitioner. So the next day at the clinic, I was like, Oh, wait a minute. I have got to get an ultrasound ASAP. And so that’s when they ordered the ultrasound, which led to the biopsy and pathology and all that.
And what type of breast cancer were you diagnosed with? Okay. And Janet, tell us a little bit about your story.
It was last year, I had just turned 38 years old. I was waking up one morning and I just felt something. And I was like, what is going on? What is this? I like super healthy. I was like an athlete. And, you know, I’ve worked out a lot and stuff like that. So I went to I didn’t even have a primary care physician at the time, just because I’d always been healthy. Didn’t have to go to the doctor, but I did have a natural path which is a natural doctor, but they also have an MD certification. So I was talking to her about it. She said, Oh, don’t worry about it. You know, just keep an eye on it, this and that. So I let it kind of go a month and then it started to grow and change. And I was like, Oh, Hey, I don’t really know what to do with this.
Another couple of months went by and I was like, okay, now I really, for real need to get this looked at. So I went to my gynecologist. You did the referral to have imaging done while they’re, you know, I’m below the age of 40. So I’d never had imaging done before. So I went by myself, went and had the mammogram done. They were like, Oh, okay. We need to also do an ultrasound. They did an ultrasound. A second person came in, everybody was quiet, but I started to panic internally and the doctor, as opposed to just saying, okay, well we see something suspicious. Come on back for your biopsy. She just said it flat out, you look like you have cancer. I wanted to punch her. I had nobody with me. Like, it just hit me like a ton of bricks. But I went to do my appointment for my biopsy, had to wait two weeks to do that. And then they called me, let me know what was going on. And it started from there.
Hmm. So, so Janet, I think you’ve just covered actually, my next question, which is after the diagnosis, what were your next steps? So some Bridget, let me ask you, after your diagnosis, what were your next steps?
Well, like she said, she was alone and my husband was actually deployed overseas and my number one thing was to get him home. But the next step was, I just, I wanted it taken care of now, right now, as my bio mentioned, I had just found out two months prior that my BRACA, which puts you at very high risk for having breast cancer, my mom had had ovarian cancer. So with a positive BRACA, which led me to have in a BRACA tested, and I had just learned that mine was negative. So I took a sigh of relief that put me back at the risk of the general population. Then, you know, finding the lump was just like a huge slap in the face. Because at that time I was thinking, okay, I’m not really at that much risk anymore. You know, just the risk of the general population.
So then, you know, finding a lump, my husband was deploy. He did get to come home. Thankfully he was home within like 24 hours. I wanted to know what was going on. I’ll let him know the plan. I was ready to attack this thing. And that’s where my main, I guess, frustration came was everything is just a process. Now you have to wait on everything, how to wait two weeks for the biopsy. I had to wait two weeks to get into a doctor the whole time. You know, I’m thinking, Oh my gosh, this is just growing and it’s getting bigger. You know, I need this out now
And so I just wanted everything done quickly, quickly, quickly.
And so thinking back to your journey were there some specific people or things that helps you sort of overcome that initial shock and spring into action to become engaged and informed patients? I think Bridget, you mentioned you brought her husband home. Janet. Was there anybody for you that, that sort of played that role?
Definitely. My husband, you know, he’s been, had my back, been by my side, had my front side and middle through all of it. I’ve really good friend group. Actually one of my good friends is not specifically for breast cancer, but she’s a cancer social worker. She was the person that I reached out to that I was like, Hey, insurance got me in this group. I want to make sure and get a second opinion. Can you look that up? She within, I don’t know, 24 hours, she had an appointment for me with another doctor and another surgeon. So they were all really, really helpful for that
For sure. Yeah. That’s great. That’s great. And I know that you both made some serious and personal decisions during your breast cancer journey. How did you prepare yourselves to have those conversations with your doctor? Janet, let’s start with you on that one.
It was very, and I guess this is gonna kind of be perfect with the current, you know, racial inequality climate. And my mom was a nurse and she worked in the medical field for 30 years. I had concerns about getting good care and making sure that I was taken care of as a black woman in America. I mean, you’ve seen studies I’m sure in the news and then just history kind of showed that that’s not always available to people with my same skin color. So I was upfront guns blazing with my doctor upfront. She’s been phenomenal. So I was very thankful, but I was upfront with her and said, you know, like I know I’m about to have a team of people responsible for me and making sure that I’m safe and okay. And I’m trusting that you’re going to do that for me because that’s not what will always afford it in, in medical care.
You know, if I come in and say something hurts, I don’t want you to say, Oh, well, that’s not what’s going on. Like, I want you to make sure that you’re listening to what’s going and I’m not a huge complaint or so she, and she’s found that out quickly, but I just wanted to make sure that I was covered. So I was very upfront with her and honest in the beginning and she’s done a phenomenal job she’s, you know, helped get a really, really great team of doctors to help with every single thing. I’ve had answered questions, random emails that I was in the middle of the night. So I was freaking out about nothing, just being upfront and honest on that very first appointment was what was helpful for me.
That’s great. And Bridget, how about you? How did you prepare for that conversation? I mean, you’re already in the medical field, right. Did you do anything else to prepare for that?
No, not really. Cause I mean, just as I want my patients to trust me, I wanted, I chose, you know, a doctor that I wanted to put my full trust in. And honestly, I stayed totally off of the internet. Tell off Google, I refuse to go on there because you read so much and it can just instill so much fear in you and everybody’s situation is different. So reading so much out there on the internet before my husband left to come back, he wanted to know all the details and I knew he was going to immediately go research. Well, I didn’t want him, I didn’t want all this stuff. That’s out there floating around the internet to scare him. So I wouldn’t even tell him. So I absolutely refused to get you know, dr. Google, web MD, all those things, because I wanted to choose a medical team that I trusted enough to tell me exactly what I needed to do. I mean, that’s the reason why they go to school for so long and study and do all the things that they have to do. I wanted to put it in just in their hands.
Okay. And so thinking back before your diagnosis, did you know, or did you realize that breast cancer treatments were so unique and so personal? So, so Bridget, let’s start back with you on that one.
Not really. And I mean, like you said, you know, being in the medical field I absolutely had no clue how many treatment options there are. Every single woman’s experience and situation is different. I have met and talked with so many ladies and, you know, gotta down through their journey and there is not one person that I have met that has had the same treatment, the same, anything really, everybody’s just, it’s just so different. And yes, let’s say you have her too, just like Jane and the foundation, not the pretty much the There’s so many details that aren’t. So, you know,
It’s just amazing how many different treatment options there are.
Yeah. And Janet, how about you? Did you realize it was such a unique experience?
It’s one of those things where you don’t really know until, you know, friends and things like that that are experiencing this through me, or like, well, and you’re doing what and for how long and what’s going on. So it’s just, cancer is such a vast beast and the way media portrays it and all of these things, people already have preconceived notions about, you know, what it’s getting, what’s going down when it happens. And that, you know, it’s not an immediate death sentence and you know, all the things that the media and movies and stuff like that, that you see. So yeah, it was, you don’t know until, you know, so, and it was good.
Well, and also it hasn’t been brought up that I’ve actually been through it twice. The first time I had a complete pathological response, meaning that at the time of my surgery, my surgical pathology had no cancer cells detected. So radiation really wasn’t recommended in my situation, but I had radiation the first time. Then I probably wouldn’t have found my little baby-sized spot the second time, even though I’d had a double mastectomy I did have a double mastectomy the first time again, I woke up, had an itch. So I had to go back through it again. The second time around my treatment was totally different than,
Wow. So you, I mean, it was a unique treatment two different times now. That’s amazing. So I love this next question. What have you learned along the way that you wish you knew
When you were first diagnosed? That’s always such a hard question because you learn so much that definitely patience is a virtue. None of this healing, none of it is linear. It’s not going to be, you know, like initially when I had my first appointment, my doctor’s like, you’re young, you’re healthy, you know, it won’t be difficult, but you’ll get through this. And I was like, okay. And I like held onto that. And then when I started struggling with my chemo and then had to drop a drug for my fifth chemo and then my six GMO, and then they thought I had a port clock and then they thought I had a tumor on my heart and then I had to get an MRI and none of those things ever panned out. So I’m okay. But you don’t expect any of those twists and turns at all. You just expect to go in and get your chemo and not feel good and then you’re better. And then you keep it pushing and that’s not what it is at all. So I guess I learned that, you know, once you start there, there is an end to an extent, but not really.
That’s, that’s very good to know. Average. How about you?
Well, I think I’ve learned that I’m stronger than I thought I was. And that joy is a choice. I’ve always been just a really happy person, but when this hit me in the face, you know, I was three little kids and all I could think was the worst. And I really could have sat in a corner and cried all day long, but you know what, that was not going to do me any good. So what I realized was that I had to choose joy and I had to choose being happy and it was all about my choice.
Hmm. That’s a lot. I love that. So last question. Why is it so important for women to be active decision-makers in determining their treatment plan and how would you empower other women who are newly diagnosed to do that?
I just kind of want to flip this into being an advocate for yourself though, because I had just had a clinical breast exam by my God, my OBGYN, two months prior to me finding my own luck. So I’ve actually found my lump both times. And the second time, you know, they didn’t think it was anything, but I’m like, no, this ha I had to have an ultrasound on this. And then, you know, it came back being breast cancer the second time. So I really want to flip it into being an advocate for your own self and doing your own self-breast exams and knowing your body and knowing when something is wrong and different. Then when you know, that’s why we have medical professionals is, is to tell us what kind of treatment that we need. And I think that we need to put our trust in that.
And, and Janet, what are your thoughts on that?
Same thing? I’ll just piggyback on that you have got to, if you haven’t already been in tune with your body, get into the real quick. So that way you are communicating exactly what your side effects are, how you’re feeling, all of those things to your doctor. So that way they can, you know, continue to guide you in the direction that you need, that you need to go and don’t be afraid, it’s your body and it’s your life. And if you feel like, you know, you’re being dismissed or your doctor’s not paying attention to something that you think is a big deal, like stand firm in it and say, Hey, I really need to have a conversation with you about X, Y, and Z. What plans can we have? Like, what can we do about this?
I think that’s some really, really great advice. Bridget, Janet, this, wasn’t a really amazing conversation. I really appreciate both of you taking the time to come on the show and share your stories and just share some words of encouragement.
Well, so I’m going to throw in a little thing about cold capping. The first time I lost my hair, the second time I did the cold caps to, to keep it. And that was amazing. So I would encourage any woman out there. That’s about to go through chemo, to look into it.
That’s good to know. Okay. Thanks for sharing that. Alright, Jana, do you have any final thoughts you’d like to share as well?
Anybody is in the beginning of their journey, I call it a situation. A journey sounds like it’s like, you’re getting to a great situation, but it’s like, this is rough. This was a rough go with the situation beginning of your situation, journal, write everything down and be loving as best as you can to yourself. You’re going to go through a lot. You’re going to have some dark times, but just know that this is just a part of your story. It’s not your whole story.
Oh, I love that. I love that. That’s really good. Well, again, Janet, Bridgette, thank you so much for your time and thank you for sharing your stories with us. Thank you.
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