Breast self-exams and battling insurance: Jessica Baladad's survival story

[00:00:00] So I'm going over the right side of my breast, the 12 o'clock position. What goes through your head when you're doing a self-exam? One, two, three, four, five, six, seven, eight, nine, ten, eleven, twelve. I'm good.

[00:00:25] Jessica does these exams regularly. This one though, this one is different. Firstly, she's away from her home in Tennessee. I'm in Mandan, North Dakota visiting my mom and my grandmother because my grandfather had just passed away. It's so cold outside and there's so much snow on the ground. And I thought, I'm going to get in the shower.

[00:00:54] It's going to be warm. It's going to feel good. I need to get this airport smell and grossness off of me. So I got in the shower. I'm thinking to myself, it's time to do your self-exam, Jessica. I'm 33 years old. I had just gone to the doctor for my well woman's exam.

[00:01:15] She did a clinical exam of my breasts. She felt them and said nothing to me about finding a lump. I'm probably okay. And then something's like, no, Jessica, stay in your routine. It's after your period. Do your self-exam. So she does starting with the right side, which feels clear. No lumps or bumps.

[00:01:41] Let's take care of the left side. 12 o'clock. One, two, wait a second. Three. What? What is that? Do I have, wait, let me go to the right side. Do I have one over there? I've felt my ribs so many times doing a self-exam. I thought, oh, maybe that's, no, I don't have one

[00:02:10] on the right side. I have a lump on my left side, but not on my right side. Wait, let me dig further. What is this? Ow, that kind of hurt. Okay. He's up on pressure there. Okay. This is, oh my God.

[00:02:30] This is a lump. Wow. Okay. Am I too young to get breast cancer? Okay, wait, hang on. The doctor didn't say anything about this two days ago. Surely she would have said something. I'm too young to get breast cancer, right? Okay. Jessica, you take care of yourself. You lift

[00:02:54] weights. You run. You eat pretty well. You don't drink. You don't smoke. You don't. Okay. I need to get out of the shower. I need to, I think I need to Google this. Well, I need to finish my shower. Actually, I'm getting lightheaded and I need to sit down. I'm sitting down. The water is

[00:03:16] running over me. Do I have breast cancer? This is Overlooked and I'm Golda Arthur. What you just heard was Jessica Balladad recounting the story of the self-exam where she found a lump in her breast that did turn out to be cancer. At just 33 years old, she went on to have treatment and survived. Jessica used

[00:03:45] that experience to become a breast health advocate and focused on self-exams. She created a social media platform and an app called Feel For Your Life in 2021. Before I talked to Jessica, I didn't think breast self-exam was overlooked. But she makes a convincing case and she talks about why women are still hesitant to do them. Shame around our bodies and fear of what we might find. I also talked to Jessica about

[00:04:13] insurance. We may not think about it this way, but dealing with your health insurance company in the U.S. can also bring its own heavy emotions, especially when you're dealing with a diagnosis or scans and screening and paying for it all. In this episode, Jessica talks about what to know when you're going up against your insurance company. All of that and the rest of Jessica Balladad's story is coming

[00:04:39] up after this quick break. Hey listeners, here's another podcast that we love here at Overlooked. Take a listen and you might love it too. What do you want to do next? I'm Patsy Day, co-host of The Wobbly Middle, a podcast about women navigating the wobbly middle of their careers. We speak with women who've made bold moves like a lawyer turned professional chef and a midwife, now femtech

[00:05:08] innovator. Their stories show us that our midlife is full of possibility. If you're in the middle of your own wobble, let's figure it out together. Subscribe to The Wobbly Middle wherever you get your podcasts. Now back to the show. Hi Jessica, welcome to Overlooked. Thank you so much for talking to me today. Grateful to be here. Thank you so much for having me. I just think you have an incredible story and I don't say that lightly and I don't say that to

[00:05:36] flatter because I think you've gone beyond something that was a personal challenge or personal health struggle and you've gone beyond that and turned that into something that so many other people can benefit from and not everybody does that when they're faced with a personal difficulty. I'm very pleased to be able to talk to you more today about breast cancer and breast ultrasounds and breast

[00:06:02] advocacy if I could call it that. Feel for your life. Tell me a little bit about that name and what's behind that name. I just want to say first you're so kind and you're making it so easy to have this conversation with you. So feel for your life. Feel is a verb. It's an action. It's telling you to do something. It's telling you to literally feel for your life. That's why you do self-exams. I came up with

[00:06:31] that name during my breast cancer diagnosis and I was in the shower watching my hair, the life off of my head literally go down the drain and this shower is where I always did my self-exams and a self-exam is what ultimately led to my life being saved. So the name feel for your life just came to me while I was

[00:06:57] in the shower. I think some of my best ideas come to me in the shower as well so hooray for showers. But you just said something that I want to ask the follow-up question on. You said your life was saved by the self-exam. Will you tell me that story? It goes back to when I was 18 years old and I unintentionally found a lump while bathing and I thought oh my god am I too young to get breast

[00:07:23] cancer? I was raised by my dad so I go to him I'm like dad I have this lump in my breast. He's like call your aunt call your aunt. My aunt was a nurse and she had had breast cancer before. He did not know how to handle this female stuff. And so I called my aunt. We got together and I went to the gynecologist for the first time. Long story short it was eventually diagnosed as a benign tumor and I had to have a lumpectomy my freshman year in college. Had it removed and it was that experience that got me

[00:07:53] into the habit of performing monthly self-exams. Fast forward 15 years later I'm 33 years old. It took me four months to eventually get diagnosed and get a cancer diagnosis to start my treatment. Describe for me your your mental state as you went through those four months. Part of me was carefree because I'm like I'm in my early 30s. I've been married for almost three years. I have my entire life ahead of me. I'm

[00:08:20] entitled to the rest of my life. My friends are getting married. I'm being in their weddings. I'm going to their baby showers. My sister was getting married. I had an aunt with stage four terminal cancer who was getting ready to pass. I didn't want to tell people I had a lump in my breast because I didn't want them to think I was starting drama or trying to draw attention to myself or away from the people who needed care. And my husband had just switched jobs so our insurance was changing. And I just there

[00:08:49] were times in the shower you know I kept doing myself exams and I would feel the lump and I would get nervous. I'm like this cyst or whatever it is not going away. And then one day I'm I'm going through my phone. I open Snapchat and I see a video of a woman I had met at my sister's wedding. She was only a year older than I was and she was shaving her head. So I text my sister and I said why is so

[00:09:14] and so shaving her head? And my sister says oh she's got breast cancer. She's getting ready to start treatment. And I thought oh my god I have to go back to the doctor. What happened next? Tell me about treatment. It was fast from mammogram to treatment two weeks which is kind of unheard of for a lot of people. That is fast yeah. At that time I had just lost my aunt. A lot of my family

[00:09:40] they were in Kentucky to say goodbye to her and honor her life. And I felt really alone. So starting chemotherapy was really emotional and it was scary. And I just I didn't know what to expect. I just knew that I would be transforming physically into a different person. But what I didn't anticipate was how it was going to transform me into a better person and the advocate that I am now.

[00:10:06] I mean that journey from surviving breast cancer to as you say being the advocate that you are now. I don't think we sort of fall into these things. I do think we make a decision to be intentional about the fact that we're going to take our lives in this direction. Was that the case with you? Like am I wrong? Or did you make that decision to do the work that you did many times over? Or did you sort of fall into where you are today?

[00:10:32] You know it's so funny. I never said when I grow up I am going to have breast cancer and create an app and an advocacy platform that's going to hopefully save so many lives and empower people to be their best medical advocates. That was not on my you know when you're in kindergarten saying what do you want to be when you grow up? That is something I never

[00:10:54] would have written down. I think what happened was I saw insurance denials. I saw women having to go through step therapy. I saw women struggle financially. I saw how there was no accountability in our health care system. I saw the reasons why women weren't doing self exams. I noticed the

[00:11:20] relationships that they had with their bodies and their breasts and I know that when I came out and told my friends on a broader scale I have breast cancer everyone freaked out. We were again all in our early 30s and it's like how did you even know to get diagnosed? And I said well I do myself exams every month don't you? And it was crickets. I thought we talk about our breasts and how they look in

[00:11:49] clothes and how they look in photos but I guess we're just not checking ourselves and I often say you know we're instagramming our breasts but we're not mammogramming them. It's okay to do both if you feel good about yourself you know. So when I saw all of these issues I thought I'm going to do something

[00:12:09] with this. You said that along the way part of your motivations came from you know watching women be denied with insurance and struggle with paying for screenings and the knowledge the relationships with our own bodies. So I'd love to talk a little bit more and dig into those. Let's start with the insurance. Was there one moment you remember or one sort of little story or incident that you can tell me about

[00:12:38] that when you watch it unfold or happen you just thought okay somebody's got to do something about this? I wish I could tell you there was one little story but the reality is there were a bunch of stories of people coming to me and saying my insurance company denied my screening and I have a family history. My insurance company said they were going to pay for this and then they backed out and now I

[00:13:02] have this balance what's going on and I started noticing patterns primarily of women under the age of 40. 12,000 women under the age of 40 will be diagnosed with breast cancer every year. We think oh you're 40 now now your risk goes up but you have to look at other things you have to look at lifestyle you have to look at family history it's not like 40 is the magic number. 40 is the number that was decided upon from insurance lobbying when they said okay I guess we'll pay for it at 40. It used to be

[00:13:32] 50. There are a lot of advocates that came forward to have it lowered from 50 to 40 but I think it should be even lower than that for women who have greater risks. Women under the age of 40 they have to put up a fight to get screened and when I created the Feel for Your Life app I thought well if I can create something that gives a woman an easy way to document her self-exams to say month two, three, four, five I didn't have a lump. Month six I found something I can now go to my doctor.

[00:14:02] My doctor can go to my insurance company and say this is why it needs to be covered because my patient keeps up with her self-exams and this is the proof and data that we have. We need to intervene now medically. And this is top of mind for me now because I had my breast ultrasound last week in fact and I like to joke not really that it was both icky and expensive because my insurance company

[00:14:26] did not pay for my ultrasound. So let's start here there's a new FDA regulation that says if you go for a mammogram and you have dense breast tissue your provider has to let you know that you have dense breast tissues. You need to be told that and you need a follow-up screening. And it's curious to me how when you're over 40 the insurance company will pay for your mammogram but they won't pay for the next step that should naturally and medically happen straight after which is your breast ultrasound.

[00:14:56] I can't for the life of me figure out why one is paid for and the other isn't. So I put it out in the newsletter that I write and I had people write in and say oh 300 bucks which is what I paid is nothing. I'm fighting my insurance company for a thousand dollars. And I was like oh my goodness. So this is just the tip of the iceberg basically. Right now different states have their own legislation

[00:15:21] that will require insurance companies to pay for supplemental screenings. That's what they are. If you have dense breast tissue and you go from a mammogram and you're referred for an ultrasound or even an MRI those are called supplemental screenings. And depending on the state that you live in it should be covered. I do have some resources for what states are covered on feelforyourlife.com. Also insurance companies bank on you not knowing your rights. So they'll try to hold you accountable for something

[00:15:49] that you may not even you're supposed to pay out. So there are a few things that you can look at. You can go to the bill itself and you can look at how it's coded. Was this coded as a screening mammogram versus a diagnostic mammogram? That's one thing you want to look at your bill and make sure it was coded correctly. And then if it is then you go to the insurance company and say hey this is a screening

[00:16:12] mammogram and then under this state law you are required to pay for it. And you know they may put up a little bit of a fight for you but there's different routes that you can take there. Every state also has a regulatory agency where you can file complaints against your insurance company to hold them accountable to the coverage that they're supposed to provide for you for supplemental screenings. It's a little bit of work but if you're persistent it can pay off for you. I'm not going

[00:16:39] to say it's easy. I'm not going to say oh you just fill out this form online and hit submit and it's all taken care of. You do have to do the work and understand that it does kind of wear on your emotional equity a little bit. But they bank on that for you to just pay up so that they don't have to. Am I right in thinking that there's a little reluctance to even do a self-exam to do a self-breast exam? Never mind go for a mammogram. What are the things that hold women back from getting themselves

[00:17:06] to any of these screenings including a self-exam? I think it starts with the relationship that we have with our breasts and our bodies. When I was going through cancer and I'm trying to figure out why women didn't know about self-exams I went back and I thought well how do women feel about their bodies? And I did like a very informal survey on Instagram and Facebook and LinkedIn. I said

[00:17:31] what did you learn about your breasts while you were growing up? And the number one answer was nothing. But within that nothing I realized why did they not learn anything and there were three reasons that women's breasts exist. They have a function depending on what age you are and what that function

[00:17:55] is and they should be covered up. They shouldn't be shown. So there's a shame-based narrative around our breasts to begin with. Then while I was going through chemotherapy and telling women about my breast cancer diagnosis they came to me and said how did you know to get diagnosed? And I told them about self-exams and I said you know do you know how to do one? And it was like no I don't. How do you do a

[00:18:23] self-exam? And when I kind of dug into why they didn't know how came down to three reasons. No one had ever taught them. They were ashamed of their bodies and didn't feel comfortable touching themselves or they were uninsured or underinsured. They didn't have a financial means for getting screened and they were afraid of finding a lump that would warrant a screening. So there was a fear factor in there

[00:18:49] as well. Knowing all of this I realized that these are things that I'm going to have to overcome to inform and educate and empower women to do their self-exams and that this is a bigger issue than just telling women hey here's the education material for doing it. There were deeper psychological

[00:19:09] reasons for why it wasn't happening. Shame and fear are huge emotions and I think sometimes so huge that you have to really take a minute and stop and identify that they're present in the first place. Right but when we look at shame it also on the other side of it when we feel this negativity it

[00:19:35] tells us to seek safety to seek love to seek compassion and that we are actually worthy of having grace. And on the fear side you know we think of fear as this big heavy emotion of fight flight freeze but on the other side of fear I think of it as plan prepare and seek help. You know I'm realizing actually that I kind of was taking self-exams and breast health for granted. So this is fascinating

[00:20:03] to me because the things that we assume to be the bedrock of our health insurance system like for example as you were saying when you turn 40 you need to have a mammogram every year. It's like congratulations here's your here's your reward. I didn't realize it was sort of as almost arbitrary as that and it's kind of making me not that I need encouragement to question my health insurance

[00:20:29] company anymore but really to question like the foundations of what is this built on? How do we get here? As you say it can be a discouraging process to be in a battle with your insurance company. What's the one thing that you would say to someone who is in that battle with their insurance companies or any guidance that you have for people? Document everything. From the moment you know on this

[00:20:57] day I'm going to the doctor to have this address this is what they said these are my doctor's notes get copies of that understand what is being coded going to your insurance company and ensure that it's correct. Most of the time what they do it's called a prior authorization which all it does is just delay the care you're supposed to get. Any kind of approval on anything documented don't throw any

[00:21:25] of that away save it and if you have a conversation with them either over chat I love to use the chat feature on an insurance company's website because it's right there they say they're going to send it to you and they do most of the time but it also gives me the opportunity to screen record and take screenshots while I'm having that conversation. I live in a one party recording state for phone calls

[00:21:49] if I have a conversation with them on the phone I record it to make sure that I have it there and I hold them accountable to the care that they say they're going to pay for for me. Many times what they try to do is go back they'll tell you one thing and they'll put something else in writing and they count on you not having the receipts as the kids say these days. They don't count on you having the receipts for what they said previously but when you can show that and you need to escalate

[00:22:18] these issues and you need to file complaints with your state boards then you know it's going to be difficult for them to hold up their end. I will say another thing that I do is when you go through a denial if you're going through the denial process at the same time get access to your claim file it's something that a lot of people don't understand that they can do. If you call your

[00:22:46] insurance company and say this claim has been denied I want access to my claim file they're supposed to tell you the people and the entities that were involved in the decision for your claim to be denied the doctors their specialties you know was this person even qualified to deny a surgery? I know someone in the breast cancer community who reached out to me and said a podiatrist denied

[00:23:10] my medication and I'm like that's insane. So you can challenge the credentials of the specialists quote unquote who have denied your claim as well and many times what you also have to look out for in doing that the customer service representatives have not always been trained to know the language so when you say things like I need access to my claim file they're intentionally not trained in some

[00:23:38] instances to know what you're asking for and so when they plead ignorance with you I mean they're following a script and that script is to get you off of the phone as soon as possible that script is not meant to help you it's meant to save time and money for the insurance company so when you challenge that script that they're following it really kind of makes them nervous and anxious so sometimes they may not have the answer but you have to push for the right people who do.

[00:24:21] What do you think is the most overlooked aspect of what we've been talking about today whether that be self-exams or insurance or kind of that emotional burden that we take on with both of those things and where is that inequality felt most deeply? One of the most overlooked aspects is that we think that age has everything to do with a woman's risk for

[00:24:46] getting breast cancer and we have to look at the bigger picture we have to look at her lifestyle we have to look at her family history we have to evaluate her breast density we have to look past the things that so many women are dismissed upon it's oh you just need to lose weight oh you're stressed cut back on your caffeine consumption it's your hormones those are default answers again to get people in and out

[00:25:12] of a doctor's office within a 15 minute appointment period so many women they contend with medical gas lighting the fear that they're again shame and fear coming up again they're not going to be believed no one's going to take them seriously and they're going to be left with more questions and answers yeah and it just seems to me that if you're a woman you need to take your health more seriously than

[00:25:35] everybody else around you thank you so much for joining me on the podcast and i'm going to link in the show notes to your website and all the fantastic resources you have on there so people can go dig even further into more information about self-exams and advocacy and all things breast health so thanks so much again jessica thank you i love this this was great i really look forward to this episode

[00:26:05] overlooked is here for information and empowerment but not medical advice every person's body is unique so if you have questions it's best to speak to your doctor or health care provider we're building a community around women's health so that no one is overlooked if you'd like to be part of it hit the follow button on this podcast wherever you're listening to this or you can show us some love by

[00:26:31] writing us a review and sharing this episode with someone overlooked is written and created by me golda arthur jessica martinez de jose is the show's producer you can stay up to date with the show by signing up for the newsletter and following us on instagram and linkedin we read every review and email so write to us hello at overlookedpod.com thanks for listening