You are Your Own Best Advocate

Adam Walker: [00:00:00] 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.

Grew up with the philosophy that the relationship between a patient and healthcare provider was very straightforward. The patient presented symptoms, the doctor made a diagnosis and recommended treatment, and the patient underwent that. Medicine is changing. And patients are beginning to take a more active role in their healthcare, understanding risks and benefits and choosing treatments that fit best for them as individuals.

This can also mean demanding more tests when you know, something just isn’t quite. It is you that knows your body best as a self advocate. It’s important to understand your disease. Be involved in medical care decisions, ask questions and reach out for support. Today’s guest was diagnosed with breast cancer at an early age, and is here to share the important that standing up and being heard has played in her breast cancer journey.

Sabrina, welcome to the show.

Sabrina Wright-Hobart: [00:01:08] Thank you. I’m happy to be here.

Adam Walker: [00:01:11] Excited to talk to you. You know, we talk on the show a lot about being your own advocate. So I’m really happy that we’re sort of diving into this with you, but you know, let’s start at the beginning. Tell us about your initial breast cancer diagnosis.

And tell us about how your story even started before that when you had it.

Sabrina Wright-Hobart: [00:01:28] Yeah. Yeah. Um, so, uh, 28 years old, I had a newborn, a six month old child. Um, and I was breastfeeding him and, uh, found a lump in my breast. And I went to the doctor and the doctor said, you know, you need a mammogram. Um, and I just remember at that time, the only people I knew that had breast cancer were older women.

Um, for example, my, my aunt Millie and my maternal grandmother had both, um, had breast cancer and I was just mystified. And so I went and I had a mammogram and an ultrasound and they said it was a clogged milk duct. And I thought, oh, good. Um, let me go back to my baby and, you know, um, Just forget about this.

And, and honestly, if I would’ve known what I know now, I would’ve insisted on a biopsy, but I did not know that at the time. So flash forward, I’m 37 years old. Um, I think blood coming out of my nipple. Um, so I kinda knew, well, gee, I need to call to talk to her. Um, and, uh, so I go to the doctor and she said that I had a lump the size eight, a a golf ball.

In my breast and I needed to get a mammogram and I went and got a mammogram right away, get mammogram and they called and they said, you need a diagnostic mammogram, and we’ll see you with. Two weeks. And I went crazy. I’m like, no, you’re not seeing me in two weeks. And I had a mammogram the next day. Um, and long story short that led to a biopsy.

I was, uh, uh, diagnosed with a stage two B breast cancer had a, um, A single mastectomy with no reconstruction, a Sentinel node biopsy, which came back clear, um, that was followed by, um, four rounds of AC chemo and five years of Tamoxifen. Um, so yeah, that was my first experience with breast cancer. And, um, you know, I was about to celebrate my 14th.

Anniversary cancerversary and, uh, I was at the gym and I was doing bicep curls. On a machine. And I noticed that my one upper arm was bigger than my, my right upper arm. And that was the site of my breast cancer. And, um, so, you know, I started feeling around and felt alum and, um, that’s when I ended up going to the doctor and getting my, um, diagnosis of recurrence just two weeks shy of my 14 year cancerversary.

Yeah, so,

Adam Walker: [00:04:17] wow. Wow. That is, that is quite the story. So let’s talk about that, that first diagnosis for just a minute, you mentioned you opted for a single mastectomy without reconstruction. Can you talk a little bit about how that decision was received by your healthcare

Sabrina Wright-Hobart: [00:04:32] team? Yeah, so, um, you know, it was really interesting because it, it almost felt like it was like, what type of reconstruction are you going to get?

That rather than do you want reconstruction? And with me at the time, my children were five and nine and I was a very involved mom and I didn’t want to be down. And, um, for too long and with a single mastectomy, I was down for about two years. Um, where with reconstruction, it would’ve been four to six weeks at least, you know?

Um, could it be a really long process? I mean, reconstruction is not simple, a simple process. I mean, you could do a whole other. Several episodes on reconstruction and long story short, my general surgeon, um, she decided that I was too young to really decide that I don’t didn’t want reconstruction. So she did do my mastectomy, but she left, um, what is called a mammary fold.

Um, so that if I decided to get reconstruction later, I’d have a good results. Um, so basically it’s the bottom of your breast. So she left quite a bit of breast tissue, so I’m not, I was never flat on my left side. Um, Yeah. So it was really nice. Um, this time to go and talk to a plastic surgeon, because I decided to get my left breast removed, um, have a mastectomy to basically match my left mastectomy.

And, um, she did not pressure me at all about reconstruction, so it was nice to see the

Adam Walker: [00:06:15] difference. That’s good. That’s good. And so then you mentioned, um, you know, I just want to, I just want to make sure we’re walking through this whole story. You mentioned you were working. You notice one arm was larger.

It was, and it was, you thought it was related to breast cancer. And so that was kind of your trigger. Like you knew your body and that was your trigger to know this isn’t quite right. Let me go get this checked out. And that was right near the beginning of COVID as well, right? Correct.

Sabrina Wright-Hobart: [00:06:38] Yes. As a matter of fact, on the day of my appointment, um, to go get the lump checked out, I got a phone call in the morning, um, and I saw it was from the doctors.

So I didn’t answer it. And let it go to voicemail and her voicemail was oh, because of COVID. Um, can we change your appointment to a phone appoint? And I didn’t bother to call her back. I showed up because I’m like, how can you check for a lump over the phone? I mean, that doesn’t make any sense to me. So, yeah.

Um, and then I go to the appointment. So this is a really big point that I want to make, um, while we’re here because you know, everybody knows their own body better than anybody. Um, you don’t have to be a medical expert. And also, I want to say, you know, doctors are human too, right? And so I’m getting this exam and she was like, I can’t feel anything.

And, um, so I took her hand and I put it on, you know, where I felt the lump. And as soon as I did that, she said, you need to get an ultrasound in a biopsy.

Adam Walker: [00:07:48] Wow. It’s really great that, that you were, I mean, willing to do that because I think a lot of people in that situation would be like, oh, great sign. A sigh of relief.

I’m good. The doctor doesn’t feel anything. I’m just crazy. I’m going to walk away and you’re no, no, no. Let me show you, uh, that’s. That’s really amazing. So, so let’s, let’s dive into that just a bit more. You were your own advocate several times. I mean, ignoring the doctor’s call to make it a telehealth appointment, showing them where the Lopez you’ve been, your own advocate, several stops along the way.

Why is that so important?

Sabrina Wright-Hobart: [00:08:21] I think it’s so important because, you know, first of all, like I said, you’re the only person that knows your own body, but also, you know, doctors are overwhelmed. You’re not their only patient. Right. So when I found my lump in my, in my armpit, like nobody else really worried about that except for me.

Right. You know what I mean? It’s easy just to blow that up. So if you don’t stand up for yourself, nobody else is going to stand up for you. Right. Um, and I’ve heard too many cases because, you know, going back to when I was first diagnosed or even prior to being diagnosed, it was like you’re too young.

Even at 37. The doctor said to me, when he was doing the, um, initial biopsy where the needle biopsy on my original cancer, he said, you’re so young. I’m sure this is assist in. As soon as this needle goes in it’ll dissipate. He actually said that to me and you can watch the ultrasound guided biopsy. And so I was watching and as soon as it did it, nothing dissipated, it’s like a little piece off and he got really quiet.

And I knew at that moment I had breast cancer. I mean, I didn’t get the call for a few days, but I hope that that was the last time he said to anyone you’re too young. And I was 37. Um, you know, after that, I became really involved in that young, um, cancer support community. And I’ve met so many women that have been told you you’re too young.

My friend Nicole died at 29, 2 weeks shy of her 30th birthday. She was finally diagnosed at 26. She was having issues since she was 20. By the time she was diagnosed, she was, you know, she was actually early stage, but she ended up getting stage four within a year. Yeah. If you, if you want to live, you kind of, you got to speak up for yourself.

Adam Walker: [00:10:20] Yeah, that’s right. That’s right. And, and that’s, that’s the point that we make a lot of times on this show, you, you have to be your own advocate. So, so talk to us about where you’re at now. What’s your current health status? How often do you have to be scanned? And do you feel like you have to be more in tune with your body than, than ever.

Sabrina Wright-Hobart: [00:10:37] Yeah. Do you feel like I’m more in tune with my body than ever before? So, you know, I went through a lot this last year. Um, I, um, got my official diagnosis, um, March 26th, 2020 of a recruiter. And that was the same day that the state of Colorado shut down. Um, so most of everything I went through, I had to do alone.

Um, nobody was able to come to any appointments with me or, you know, that kind of stuff. And, uh, so I started chemo, um, April 9th of last year, and basically did, uh, chemo, um, through the end of July. And I’ve ended up in the hospital twice. Um, had two blood transfusions, um, Just really, really, uh, tough, but grateful that these drugs were available.

Um, you know, then I had surgery, um,  lymph node dissection to get rid of all of the lymph nodes and the cancer that was in my armpit. Um, and then, uh, followed by radiation, uh, came back in March and when I’m done with everything, I got a scan, it came back that I was stage four. Um, And the good news is that I’m stage four, no evidence of active disease.

Um, so I feel really, really fortunate about that. My doctor and I both look at it as a, um, diagnosis of, uh, kind of like a chronic condition. I told my doctor and she agreed that, um, you know, I’m going to live another 20 years. And I’m going to die from something other than breast cancer. Um, so, and she agreed with me, although I don’t think that she would dare disagree with me.

Adam Walker: [00:12:21] I love that. I love that. And I love, I love the, the attitude and the approach that you have toward that. So, so I wanna, I wanna, I wanna look at it. The whole spectrum, you know, you, you had an early diagnosis, you said there was 14 years between that and your second diagnosis. What improvements have you seen throughout your journey as it relates to patient navigation and the overall acceptance of making your own decisions?

Sabrina Wright-Hobart: [00:12:44] Yeah, absolutely. What I’d say the first time I was diagnosed, um, you know, I, uh, uh, through my insurance company, the way they had it set up was that the person that navigates your care is the, um, Uh, the breasts of the general surgeon that does your surgery. So I felt that was really odd, even, you know, that, and I was like, this is weird.

And the way they had it set up too, was that. You see the surgeon, you get surgery, then you go see an oncologist, which I also found very bizarre. Cause I was like, I have cancer. Why am I seeing a surgeon first? Especially since there is the option. Of course at that time, it wasn’t very common. Of course there’s the option of doing chemo prior to surgery, depending on the case, you know, it just, uh, it depends on the cancer.

There’s so many things that, um, you know, cause breast cancer, isn’t just one type of cancer, right? I mean, there’s so many, um, variants. So once again, I advocated for myself back then and I got an appointment with an oncologist prior to, um, getting surgery and all of that. But this time was a lot nicer because they actually have nurse navigators.

Um, that are assigned to every breast cancer patient. So that’s the person that’s doing your navigation and making surge sure. Your surgery set up your, uh, oncology appointment, all that kind of stuff, your radiology, all that kind of stuff. So that was really nice. However, I got to flash forward to being staged for, um, there’s no navigation after your initial diagnosis.

So. When I got my diagnosis of stage four, they’re like in a panic and there, which I didn’t understand because I know evidence of active disease, obviously my endocrine therapies working right. That I started in October. Obviously that’s doing the trick, but they’re like, oh, get your blood work done. You got to start a bridge.

You got to start our brands. So I do. And then I go, wait a minute. I’ve got surgery coming up. Does my surgeon. Now I’m taking ivory. So I emailed my surgeon and she’s like, oh my God, no, I can’t do surgery on you. If you’re doing chemo. Cause Ibrands is an oral chemo. She said, I don’t want to do surgery on you until you’re at least four weeks out from finishing chemo.

So I respond back to her. I said, well, I’m going to be taking this for the rest of my life. Or until it stops working or I can’t tolerate it anymore. So, uh, yeah. Uh, so you know that I get my oncologist involved and she’s like, oh my God, stop taking it right away. So if I wasn’t paying attention, my surgery would have been canceled.

And what’s interesting and unfortunate about my surgery. I’m really, really happy with the results of my surgery. Um, however, from the tissue, they found a new primary breast cancer. Um, in my right breast, which I was getting regular mammograms son, I had just had a mammy, a clear mammogram in January of this year.

It turns out it was a low Vilar breast cancer, which I did not know this, but it tends to be hard to detect I both mammograms and pet scans. So it didn’t show up on all the scans I’ve been having, like, yeah. Um, lovely. It was. Small, there was no spread to the lymph nodes, you know, so I did five more rounds of radiation on my right side.

Um, but we would have never discovered this. If I hadn’t opted to have this surgery, I always say I’m the luckiest and lucky person. Right.

Adam Walker: [00:16:26] Well, you know, it, it strikes me that you’re a very tenacious person, uh, and, and that you are willing to push. When pushing is what’s needed. And so it’s, I’m just so impressed with that.

So I just, you know, last question. What do you want to tell our listeners? What final kind of empowerment or encouragement do you want to share with?

Sabrina Wright-Hobart: [00:16:47] Yeah, well, before I get into that, I do want to, I don’t want to skip over one thing. Okay. You know the difference between 14 years in diagnosis? Not only did I see a great improvement in navigation, um, and care, but also the access to drugs.

There are drugs that I took this last year, and then I’m taking out the eyebrows. That were not available 14 years ago, the amount of innovation and access to treatment has just grown exponentially. And so I want to say how grateful I am. Not only to all of the researchers out there and you know, all the research they’re doing and the people that are bringing that to the patients, the doctors.

People are running the clinical trials. Um, and most importantly, the patients that are participating in the clinical trials, they are my heroes. Um, you know, I really. You know, we wouldn’t be here without them. And, um, I just feel so, so grateful for the innovation and I just feel really positive about the future in helpful that, um, we will find a way to stop cancer from moving from the original tissue and becoming stage four, because we all know early stage cancer is not a death sentence.

It’s when it spreads from. That you know, to distance sites. So, and now that’s not a death sentence either, and that’s just beautiful.

Adam Walker: [00:18:32] That is beautiful. That is beautiful. I love that. I love that. So, um, I th thank you so much for sharing that. Um, so do you have any, any final thoughts or any final encouragements you,

Sabrina Wright-Hobart: [00:18:42] yeah.

You know, I would just say you have to be your own advocate, you know, your body the best. Yes, I, I love and respect my daughter’s eye doctors. I think I have a wonderful team, um, and I love them for their expertise, but I am the expert in my own body. And you are the expert in your own body. And if there’s something wrong, he.

Talking, keep asking questions, keep demanding tests. This I’m sorry. I know it sounds so cheesy, but this week, uh, the squeaky wheel gets the oil, right? I mean, you know, that’s honestly been my, my experience. As a matter of fact, I have to tell you this because it’s just so timely. Um, so there’s a test called, um, Cigna Tara, which I wish I would have known about in between, because what it is is a CTD and DNA blood test.

That they do on your own, um, cancer. Right? So if I would have had this, um, uh, access to this test in the interim, um, they could have found my recurrence much sooner and I, more than likely wouldn’t have had stage four. Right. Um, now I’m getting the test now that I am stage four, just so that we can monitor.

So, what it’ll do is if my cancer starts coming back, the CTD on hand will show up in that. And then we can, I can talk to my doctor and go, okay, we need to change it, the treatment, whatever we need to do it makes me a more, once again, more empowered because I’m more information. Information is knowledge, right?

Adam Walker: [00:20:17] That’s great. And that’s, I mean, again, just, you gotta be your own advocate. You always gotta continue to be your own advocate, Sabrina. This has been great. Like I said, love your energy. Love your tenacity. Thank you so much for joining me on.

Sabrina Wright-Hobart: [00:20:32] Yeah, I appreciate the opportunity. Thank you so much for what you do.

Adam Walker: [00:20:42] Thanks for listening to real pink, a weekly podcast by Susan G Komen for more episodes, visit real for more on breast cancer. Visit Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter at AIG Walker or on my blog. Adam J