Becoming Your Own Advocate

Jamie DePolo: Hello, everyone. I’m Jamie DePolo, senior editor at Breastcancer.org. Our podcast guest today is Kimberly Irvine (formerly Jewett), a two-time breast cancer survivor, passionate advocate, and consultant and CEO of her Chicago firm. Kim was first diagnosed with breast cancer when she was 31 years old. Her second diagnosis came 4 years later at age 35. Her treatments included surgeries, chemotherapy, and radiation, all while being a mother to two young children. Currently, she has no evidence of disease. Kim attributes her survivorship to her faith, strength, hope, and passion. She has recently published a memoir about her breast cancer experience called STRONG(ER+): Becoming My Own Best Advocate and Discovering My Purpose. By sharing her story as a two-time breast cancer survivor, Kim aims to empower others to be advocates in their healthcare decisions.

Kim, welcome to the podcast.

Kim Irvine: Thank you so much for having me. I’m so honored.

Jamie DePolo: Let’s go right back to the beginning. When you were first diagnosed with breast cancer, did you really have any idea what being your own advocate meant?

Kim Irvine: Yeah. You know, in my situation specifically, I did, and the reason was I, unfortunately, had dealt with being the care partner for my mom when she went through brain cancer just a year and a half prior to my diagnosis. When my mom was diagnosed with this, as you can imagine, my father was in shock and disbelief, and because I was the eldest of four, it ultimately kind of fell on my shoulders to be that advocacy support person for my mom. So I learned really quickly how to really advocate for my mother as being her care partner. 

So when my diagnosis came, I was already prepared. And I recognized how extremely valuable that was as I started to navigate my diagnosis, but more importantly, my own initial concerns of finding a mass and could this be cancer. 

Jamie DePolo: You had the experience with your mom, as you said, and you were her advocate. So how did that translate to you being your own? Because you were being an advocate for someone else, did you think that maybe you needed someone to be your advocate or how did you step into that role for yourself?  

Kim Irvine: Sure. I mean, I think I learned really quickly by being an advocate for my mom that I had to be educated on the entire process. And so I often personally, right, realize that for me, I had to advocate for myself. So a great example was when I had felt this lump in my breast, I wasn’t feeling well. I had headaches and fatigue and all of those various different symptoms. And I remember the doctor calling my mom, and I was sitting at her table actually, and I had told her that I had just felt this achiness, and my mom was like, “Have you given yourself a breast exam?” And I remember thinking to myself, breast exam? I’m 31 years old. Why would I need a breast exam? And so I went up to the bathroom and gave myself a breast exam, and I ended up finding this lump under my armpit. 

Well, of course, I came downstairs. I let my mom feel the lump, and she’s like, “You better get that checked out.” And so I went to my OB/GYN and I expressed my concern about finding this lump, and I’ll never forget sitting in her office and her looking at me and saying, “Oh my gosh, this is probably just a fibroadenoma. Women your age get these all the time. It’s really not a big deal.” And I remember pausing for a moment and thinking to myself, she’s probably right. I’m just coming out of my mom’s cancer diagnosis. I’m probably paranoid and overreacting. 

But there was something in my gut telling me that I had to advocate for myself and really know for sure. And so I kind of countered back and said, “Listen, while you may think this is a fibroadenoma, I’d really feel better if you can just order a mammogram or ultrasound or something so that I can know for sure.” And she looked at me and she just snubbed me. She just went, “I have no problem ordering this mammogram, but you’re going to see that it’s just a fibroadenoma.” 

And I remember just sitting there, right, thinking to myself, oh my gosh, did I do something wrong? I felt very belittled. I felt like I shouldn’t even do the mammogram, but at the moment, I knew it was my responsibility to advocate for myself like I had, even though she made me feel like I might have been overreacting. And here I went, in my for mammogram, which turned into an ultrasound, and then at 31, I heard those words, “You have cancer.” So I do think it was important that I learned to advocate for myself through my mother’s diagnosis. 

Jamie DePolo: It sounds like it was absolutely important that you learned how to do that. So having that role with your mother, and then you took it on for yourself, did you see a difference in the way you interacted with your doctor, say, maybe before even you were an advocate for your mom and then it sounds like your diagnosis came very quickly after that. So you were already kind of in that advocate mode. Can you even remember how you dealt with doctors before you were an advocate? 

Kim Irvine: Yeah. I think again, it goes back to that point that I ultimately knew what a care partner role is, and let me just touch on the care partner/caregiver term. 

I think what I’ve noticed in the last decade is we often use the term caregiver, and now we’re starting to evolve that term to care partner. Because that just spans across so many different people in your life that could be playing that role. And so for me specifically, I wanted to identify someone that could be my care partner or that I was going to have this support network of care partners that were going to support me through my journey. And with that, I also identified that I needed to have a healthcare team, right? And at the time, when you’re first diagnosed, you have no idea what a healthcare team even consists of, right? 

And so for me, it was really identifying who are the people that are going to come into play as I start to navigate this process, whether it’s going to be a breast surgeon, a genetic counselor, a plastic surgeon, an oncologist, a pathologist, a mental health professional, a nutritionist, a fertility specialist, radiation oncology, right? I mean the list goes on and on in terms of who that team was going to be, and then came the bigger part to your question, in terms of how did I interact with my doctors? It was recognizing that yes, they are doctors, and I know it can be really intimidating for people to have that interaction, but at the end of the day, we were doing this as a team. I was the CEO of that team, and it was my responsibility to collaborate with my team. Because ultimately, they might have given me treatment recommendations to help guide my process, but it was really ultimately my decision whether I was going to take those recommendations along the way. 

Jamie DePolo: Do you think that taking on this advocate role in your healthcare, did that carry over into other aspects of your life? Did it help you be an advocate in other areas?  

Kim Irvine: Oh, absolutely. You know, I went through cancer twice, and I feel extremely blessed and grateful that I’m still here today. But I also as a result, still had other adversity that I faced. I unfortunately had to make a difficult decision to go through a divorce which then led to me becoming a single parent. Which then also had me start to really evaluate and assess the career path that I wanted to take because I wanted to be a mom to my child, to my children. I wanted to make sure that that role was the most important thing that I was doing because I knew after having cancer twice, how important it was to play that role. And so for me, it was also about making those decisions on divorce and obviously single parenting and career decisions. 

You know, it’s a challenge, because you start to really evolve as a person. You have to adjust to what I call your new normal. But you’re constantly advocating for yourself. You’re looking at yourself as a whole, and you’re starting to really identify what are the ways that I can change as a person and how do I continue to advocate? You know, filing for divorce on my own was scary. Deciding to be a single parent is overwhelming, and continuing to have to advocate for my children. Looking at my career in terms of did I want to go into the corporate world again? Or did I want to seek out being an entrepreneur so that I have some of that better balance to be a mom? And it was all about advocacy, right? It was advocating for myself in what my aspirations were. 

Jamie DePolo: To me, it sounds like ‘advocate’ is also a synonym for strength, because everything that you did, the decisions you made, the things you looked at, you had to be very strong to do all that and have great belief in yourself. And so I kind of want to go back. You said sometimes it’s intimidating to talk to doctors. What if somebody doesn’t have that strength or doesn’t believe in themselves or really isn’t comfortable questioning a doctor, how can they get there? How can they learn how to do that and have that belief and strength? 

Kim Irvine: I’d say probably one of the most important components to anyone that’s facing a healthcare diagnosis or any type of adversity where they need to have advocacy come into play is to really leverage their support network/care partner, right? I mean, most often, when you go in to doctors’ appointments, it is so important that you always have somebody alongside of you, somebody that can not only support you, but to take notes. And I think in that role, you will often find that it is intimidating to talk to doctors, right? And I think by having a care partner alongside of you, that person can kind of step into that role and stand up and advocate for you. 

And I think we see this very often in a metastatic situation, right? Unfortunately, women that are faced with metastatic disease often have care partners leading their care. They are the people that are really championing for them. They’re identifying clinical trials. They’re the ones that are speaking to the doctors about the possibility of getting into a clinical trial, coordinating the travel for the trial, and all of those various things. And so I do encourage and try to say having that care partner alongside of you — and like I said, you can have a myriad of care partners in your support community — but those people are essential to your journey. 

Jamie DePolo: If I’m understanding you right, if someone maybe isn’t comfortable or doesn’t have all the strength they may need to be their own advocate, it’s absolutely fine and probably necessary to have somebody help you do that the way you were with your mom.  

Kim Irvine: Absolutely. You really need. It is a necessary component to your journey to have care partners alongside of you. 

Jamie DePolo: In your book, you talked about part of being your own best advocate was maybe disagreeing with your doctor, getting a second opinion just to be sure, or to investigate other treatment options. How does someone who maybe doesn’t have health insurance, doesn’t have maybe the means to travel to get a second opinion — how can someone do that if they have limited resources or options? 

Kim Irvine: Yes. So I would say that to certain… Again, when we talk about educating yourself, it’s really seeking out the information as it relates to financial resources and support. I know that even Breastcancer.org, you guys have a myriad of those options available, as do other organizations in terms of how to seek support financially, whether that might be with co-pays or travel assistance. The list goes on and on. 

In terms of specifically identifying the second and third opinion, which I highly recommend to everybody, I think it’s important. And if you’re in a situation where insurance is a barrier, leverage those resources and, if necessary, find a way to maybe negotiate a self-pay option. I know for me, specifically, I just went through this similar situation with my 17-year-old daughter who needed to see a psychiatrist, and the psychiatrist that we were able to get in didn’t take her insurance. We were going to have to go out of network. And I had to sit there and assess, is this something that I can take on financially? Can I negotiate a self-pay rate that I can afford? And I was grateful that that was able to happen. 

I often tell people, don’t take that first diagnosis recommendation that’s given. Look at second opinions, absolutely, at a minimum, and if you can, do a third. Most importantly, I realize that the financial component is so burdensome for patients and their families, but there are financial resources available. 

Jamie DePolo: It sounds like, too, as you said with your daughter’s psychiatrist, you never really know what’s possible until you ask. 

Kim Irvine: Absolutely. I mean, it’s… I just also want to throw out this term, right, advocate. You know, the definition to advocate is to support or promote the interest of another. Being your own best advocate is an important practice that helps build confidence, and it gives you some form of control that you absolutely lose when you get a diagnosis, right? You don’t have any control. You don’t know when that final pathology’s going to come back. You have no idea if the cancer is going to recur. All of that comes into play, and it is consistent throughout your diagnosis and through survivorship, and unfortunately, if you’re in a metastatic setting, it always continues. So it really does start with you to continue to evolve as this self-advocate for yourself. 

Jamie DePolo: Part of the reason you wrote your book, as you said, was to help other people be their own advocates, and this is kind of a different way to ask the question. But if somebody is uncomfortable with that or, as I asked before, doesn’t have the strength and maybe they don’t have a lot of other options for people to be on their care team, is there a way for somebody to learn to be their own advocate? Is there some sort of outline they can follow? Maybe there are one or two specific steps they can take to start with? 

Kim Irvine: Yes. And that’s great, and I’m so glad you’re asking this question. I’ve identified 10 steps that patients and care partners can take when you are facing a healthcare diagnosis. And obviously this will continue to evolve, and I’ll hope in the future to be sharing more content, tips, and resources around this topic. So if you have a second to grab pen and paper, I would encourage you to do so, and if not, maybe we can send a follow-up document that outlines these steps.

• My first step is to really educate yourself, right? Because we recognize that when you are armed with education, that knowledge is power.

• The second piece is that you’re going to assemble your healthcare team, right? We talked about that earlier in this podcast, and it’s really identifying who are those healthcare professionals that you want on your team. And that list goes on and on and certainly we can recap who you might want to consider as part of your team, but you are the CEO of that team.

• The third step is to identify your support community and the care partners within that community. Again, stressing that that is so important for you to have. You want people sitting alongside of you, when you’re in those doctor’s appointments or when you’re sitting in the chemotherapy chair, giving you the support that you need and taking notes, most importantly. And maybe there’s questions that you’re not asking or thinking of that maybe your care partner is going to know they can ask for you.

• The fourth step is also what we talked about, is really seeking out second and potentially third opinions.

• The fifth step, know your family history, your genetics. There has been tremendous advancement in the space of genetics over the last decade and how it plays a role in cancer and other chronic illness and rare disease. And it’s time to assess where the genetic component plays in your cancer journey.

• The sixth step is self-care. What are other integrative approaches that you can take alongside the medication route that I say is so important. You talk about acupuncture. You talk about exercise. We talk about nutrition. Using the psychosocial component. What are these approaches that you can identify that are going to help build your strength and courage and resilience to get through a diagnosis?

• The seventh one is to make a list of questions for your healthcare team. I think it’s important to also specifically outline them for each specialty, right, genetics, plastic surgery, fertility, mental health, nutrition, pathology, oncology, breast surgeon. That list goes on and on.

• The eighth one, have your care partner with you and someone in your network at these appointments to take those notes and support you. I can’t stress it enough, and I continue to just always outline that because it’s so important.

• Number nine, organize yourself. You know, there is this great planner. It’s called Cancer 101, and it’s a planner that really helps organize with medical records and bills and a calendar. And it allows you to even have a spot for all of your questions so that you can be as organized as you possibly can, and you can take this to all of your appointments and it can help not only you, but your care partner. It becomes your toolkit that’s with you at all times.

• And then the last and final piece that I know worked so well for me was really holding on to hope, to have the strength and the courage and the faith to know that I can get through it. I mean obviously, in my second diagnosis, being faced with a recurrence and having the fear of, oh my gosh, am I going to be here to raise my children, I recognize wholeheartedly that there are women every single day fighting metastatic disease. And that they have to continue to use that hope and faith and strength and courage to get through their treatment journey. And that never changes, and at times, you lose that, right? And it’s okay to lose it. But these are steps that you’re going to continue to have no matter where you’re at in your journey. And having that support network is so essential.

Jamie DePolo: Kim, thank you so much. That is an amazing list, and I will say we do provide a transcript to go along with the podcast, so if anyone did not have a chance to write that all down, you can simply look at the transcript of the podcast and it will all be there. 

Kim Irvine: Well I’m really grateful, and I would also encourage patients or care partners or the support network that might be listening to this podcast to just continue to educate yourself on ways that you can support your loved one that’s affected by cancer. The role of a care partner is extremely overwhelming, and we often don’t identify or recognize how burdensome that role is. And sometimes it’s more than it is for a patient, right? And I think that there are tools and resources available to continue to support care partners in general. And I’ll continue to provide, like I said, content, resources, and tips on my website, kimberlyirvine.com in the near future as we’re getting ready to launch the book on ways that patients can gain information and support as they go through their journey. 

Jamie DePolo: Kim, thank you so much. I think this will be really helpful to a lot of people. 

Kim Irvine: Well, I could not thank you enough. And I will tell you the other last piece is, Breastcancer.org has been an absolute essential part of my journey personally. And I still use the website today, and I’ve connected with amazing women in similar situations like mine. And I couldn’t be more grateful for the work that Breastcancer.org does for women like me. So thank you for the work that you guys do.