[00:00:00] Adam Walker: This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses. Learn more at Amgen.com.
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.
When something feels off, it’s important to pay attention to it. Sometimes that might mean having to stand up to your healthcare team when your needs are not being met, which is not always easy. Asking questions or pushing can be difficult when you’re feeling overwhelmed, scared, or want to be seen as a good patient.
However, you know your body best and self advocating really boils down to listening to your body and speaking up for it. Today’s guest was having warning signs that something was wrong, but dismissed them at first because she could not feel a lump. She knew her body and despite doctors telling her that it was no big deal, she pushed for further testing, which ultimately led to her diagnosis. Here today to tell her story and why it is so important to advocate for yourself until you get the answers you need is Laurie Potz.
Laurie, welcome to the show.
[00:01:22] Laurie Potz: Thank you. It’s my pleasure to be here today.
[00:01:24] Adam Walker: Well I understand your breast cancer story actually started well before you were diagnosed. And I think it’s really important that we talk about that. So can you tell us about when you started noticing something was wrong and when, and then walk us through what led to your diagnosis from that point forward?
[00:01:41] Laurie Potz: Absolutely happy to. I started having symptoms in the summer of 2017. I was experiencing some bloody discharge from my left breast. And when I first noticed it, I didn’t realize it was coming from me. I wear a lot of deep V t-shirts and I drink diet Coke, like a mad woman. I have little addiction and I thought I was spilling Diet Coke. I thought that’s what it was. Cause it was kind of a brown stain and it wasn’t there all the time. And I started noticing a pattern that I was seeing it on my light colored bras. So I went to my OBGYN to have an exam and have her take a look. And at that point she took a sample.
The discharge that was coming out of my breast. And then she referred me to a breast surgeon and the breast surgeon did an exam, ordered a mammogram and an ultrasound. And at that point I was diagnosed with an intraductal papilloma, which are like little cysts that develop within the, of the breast.
So at that point they recommended surgery so I had that removed. Only to have the discharge return. So I kept seeing my breast surgeon every six months, and every six months I was getting another mammogram and ultrasound, along with an MRI thrown in here or there whenever. , I’m not exactly sure what the timing was on that, but we had the MRIs too.
So that went on from. 2017 until 2019. In 2019, in January, I went in for my mammogram and ultrasound. And at that point, the mammogram came back BI-RADS 3 or abnormal. And my breast surgeon reviewed the results, said it’s not nothing to worry about. We’ll just reassess you in six months. And let me tell you, knowing something was there and not knowing what it was, that was the longest six months of my life.
It was hard not knowing what was going on there. So July came around again and again, another mammogram and another ultrasound. And again, the mammogram came back by red three, something’s abnormal. Again, my breast surgeon said not to worry about it. We’ll just reassess you in six months. And at that point I was think.
I can’t do this in other six months. I can’t, I’m like, I need to have it biopsied. And I spoke with my friend who is now a two time breast cancer survivor told her what was going on. And she’s been in the loop the entire time, but told her what was going on. And she’s like, Uhuh, she’s like, you need a biopsy.
So I reached out to my breast surgeon said, I want it biopsied. And she just blew it off. It was totally off the cuff. She’s like, you don’t need a biopsy. She’s like, there’s nothing there. And I was like, no, I want the biopsy. She’s like, We’ll do the biopsy, but I’m telling you it’s nothing. You’ll be fine.
So I had the biopsy done on a Tuesday and then Thursday afternoon, she was calling me on the phone saying yeah, you’ve got breast cancer and I need to see you immediately the next morning.
[00:04:45] Adam Walker: Wow. So, I mean, how, like, walk me through that. Like, how did that feel? I mean, you get the diagnosis, this is the diagnosis that you kind of, I think probably had a hunch.
You were gonna get. But it’s also just terrifying. So like how did that feel for you?
[00:05:01] Laurie Potz: At first, all the flooded emotions just came through, you know, there was a lot of tears. There was like, oh my God, I can’t believe this is actually happening to me. But then once I met with the surgeon, the following day, my husband went with me.
I, and we kind of went over the treatment plan. At that point. I kind of had some comfort with. Because, okay. Now we know what we’re dealing with. It’s no longer that scary monster in the closet. It’s like it’s got a face it’s cancer. Let’s deal with it and move on.
[00:05:31] Adam Walker: Yeah. Yeah. I mean I can imagine that would be your case. I mean, would be your attitude. So then, so what did treatment look like? What was next?
[00:05:39] Laurie Potz: Next was well I chose to have a double mastectomy because The discharge continued and it actually started on the right side too. So I decided to have a double mastectomy. I wasn’t gonna mess around with this.
So I did the surgeon though, did wanna wait on the double mastectomy because the cancer was very aggressive and growing very quickly. So the, they decided we were gonna just do one mastectomy, get started on chemo, get started on my immunotherapy treatments. And then once I was done with the chemotherapy, we would go back and do the right side.
And that’s what we did. Treatment was difficult right before my mastectomy, they wanted to do the mastectomy in September of 2019 And I actually came down with this, a case of Shing. And we had to postpone my surgery into October. I think it was just the stress of everything. My body just was like, whoa, there’s too much going on here.
Right. So I had the mastectomy in October and started my chemotherapy. I had to wait for that to heal and then started chemotherapy in December. Of 2019 and I had a chemo port placed my body did not appreciate the chemo port and rejected the chemo port. So I had to have that removed. So then I ended up having to have an IV placed every week when I went in for my chemotherapy. Oh, and of course this all happening as the world is shutting down with COVID.
[00:07:05] Adam Walker: Wow. That’s such a difficult journey. So, so then I’m curious. I. You went through this whole thing, you had this hunch, you got the diagnosis, you went through the treatment. Was there anything sort of unexpected or surprising that sort of came out of this whole thing for you?
[00:07:24] Laurie Potz: Not that I can really think of off the top of my head. It was difficult going through chemo and going through these treatments and surgeries. During COVID a lot of my treatment got postponed. A lot of my surgeries were postponed because I couldn’t get into the hospitals because of everything going on with COVID.
And then when I did get in the hospital for my reconstruction surgery, I was in the ICU for a week and my husband could come see me. Oh. So I was there by myself and I with COVID I couldn’t have any visitors. So that was really difficult.
[00:08:00] Adam Walker: Yeah I can only imagine how difficult that must have been. So. I love that a huge part of your story is speaking up and advocating for yourself when you know, something is wrong. Specifically related even to, to when you’ve been dismissed. And so I’m just curious from your perspective, like what are some tangible ways that women can advocate for themselves when they aren’t getting the answers that they need?
[00:08:26] Laurie Potz: Right. Well, and they need to be paying attention to their own bodies and know their own bodies because you know, when something’s wrong and if the doctor isn’t listening to you, sometimes you need to find another doctor and tell your story again. And sometimes you need to do that again, find another doctor, you know, keep looking until you find somebody who will listen and work with you and do the exam, do the exams and do the tests until answers you need.
[00:08:55] Adam Walker: One part of your story that struck me was that you, you knew you needed a biopsy, you know, you could just, you know, however you wanna describe, you could feel that you needed a biopsy and you asked your doctor for a biopsy and your doctor was like, oh, you don’t need a biopsy. And, that’s the hurdle that I think is so hard for people to overcome is being able to take the initiative in that moment to push back and say, no.
I do need this biopsy and we’re going to do this biopsy now. Like, I mean any advice on that? Like how do you get that strength to give that extra push?
[00:09:28] Laurie Potz: Right. Right. I just kinda listened to that inner voice inside me. And I was like, no, I’m not taking no for an answer on this one. Just because between January and July, we’re so stressful because it’s like, I knew something was wrong.
I knew we were close to figuring it. And I wasn’t going through another six months waiting and wondering what that monster was in the closet. It’s like, no, we need to get in there. We need to figure it out. And once we figure it out, then we can move on.
[00:09:59] Adam Walker: Yeah, that’s great. That’s great. I mean, you just gotta know, like it, it is, it’s your right.
It’s your responsibility to yourself. To push, even if it doesn’t feel comfortable. So, so talk to us a little bit about being an ambassador for Komen. I understand that you have that role. What is that role and why are you so passionate about it?
[00:10:18] Laurie Potz: Oh, I love it. I love it. I’ve been doing it since January.
And it’s just amazing. I’m sure my representatives and my senators are getting sick of me because I am emailing them almost every single day. I love it day trying to get the laws changed. Anytime Komen sends me something it’s like I’m emailing them and letting them know. We have meetings set up the Capitol hill meetings this year, and I got to tell my story.
Over and over that day, just kinda letting them know the importance and the things that need to be changed with the laws and the insurance coverage and patient rights. And it’s a very powerful feeling. It makes you feel empowered by being able to share your story and say, we need to change this. This isn’t the way it should be.
[00:11:07] Adam Walker: I love that. And I love that. You’re that you’re so excited about. I mean, so not only do you advocate for yourself, but you you advocate for others as a, the best. That’s fantastic. So I’m curious then how has the breast cancer experience, how has your breast cancer experience changed your outlook on life? What are some ways that things have changed for you and your perspective has changed?
[00:11:28] Laurie Potz: Oh, I’ve had a lot of change. I had my last surgery in July of last year, so it’s been just a year now since I’ve been completed, fully completed with my treatment. And I went back to school in November and I am now a certified professional life coach. And my passion is working with others affected by breast cancer.
[00:11:50] Adam Walker: I love that.
[00:11:51] Laurie Potz: Thank you.
[00:11:52] Adam Walker: That’s so great. Oh my God. Tell me more, talk more about that.
[00:11:55] Laurie Potz: Yeah. Yeah. So my my company is Breathe Life Coaching. I didn’t mention this earlier. I have breath tattooed on my right wrist. It was a word that I told myself when I was in the MRI machines.
When you’re in an MRI for breast MRI, they lay you down like Superman. So I was constantly staring at that wrist going breathe. You can do it. So I had that tattooed on my wrist. And then once I was diagnosed, I got the pink ribbon added to that arm quick before they told me I couldn’t do anything with that arm.
So that’s where breathe comes from and breast cancer patients, at least I felt this way feel they get lost in the diagnosis. Everybody’s talking about the disease. Everybody’s talking about the treatment and I’m over here raising my hand going. Hello. I’m still here. A lot of times it feels like they’re talking about you.
Like you’re not in the room when you’re sitting right there.
[00:12:52] Adam Walker: Yeah. Yeah. Wow. Yeah.
[00:12:54] Laurie Potz: So I wanna help others kinda express those emotions, get those emotions out. I wanna hear those stories and help empower people going through breast cancer and let them know that you will get through it. There is light on the other side and you can do it.
[00:13:08] Adam Walker: That’s fantastic. That’s so good. That’s so good. Well, Laurie, last question for you. Do you have any final advice that you’d like to give our listeners today?
[00:13:17] Laurie Potz: Yes. My advice goes back again to know your own body. You need to do your breast exams. If something doesn’t seem right, doesn’t look right. You need to get that checked out breast.
Cancer’s not always alone. Even once I knew there was something there and my doctor showed me where it was. I couldn’t feel it. I knew there was a tumor there, but I couldn’t feel it. So the discharge was the only thing that kind of got me going on this whole journey. But it’s not only lumps, you know, there’s discharge.
There can be changes to the color of skin. There can be dimpling. There’s so many other symptoms and if something doesn’t look right, if something doesn’t feel right, please get that checked out.
[00:13:57] Adam Walker: That’s right. That’s fantastic advice. Laurie, you know, thank you for just sharing your story with us. Thank you for just being vulnerable and real and thank you for advocating for yourself and advocating for others.
We really appreciate the impact that you’re making in this community. And thanks for joining us on the show.
[00:14:14] Laurie Potz: Oh, you’re welcome. My pleasure to be here, Adam. Thank you.
[00:14:17] Adam Walker: This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses, learn more at Amgen.com.
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.