Join Brem Foundation's CEO, Clare Dougherty, as she engages in a Q&A-style conversation with Carine Mathurin regarding her personal journey with breast cancer and the significance of education and early detection.
Carine Mathurin is the Director of Community Engagement and Global Impact Giving at a large corporation, and Brem Foundation is thrilled to have her here today for our Voices of Early Detection blog series.
Q&A with Carine Mathurin
Clare Dougherty: Hi Carine, it's great to see you. Thank you so much for joining us.
Carine Mathurin: I'm happy to be here.
Clare Dougherty: Great, so we've talked a bit about your experience and journey through breast cancer. You have a deep personal connection to the fight against breast cancer, and we appreciate you sharing your important perspective. Let's start with why this issue is so important to you. Can you share your story and how cancer has deeply affected your family?
Carine Mathurin: Thank you; that's a pretty loaded question because we have quite a bit of breast cancer in my family. Interestingly, I started a new job in August 2021 and by January 2022, five months in, I was diagnosed with breast cancer. I was completely shocked about the diagnosis, but all the more because I had just started a new job. I was worried about what it would mean for me in terms of employment and my employer’s expectations. I watched the women in my family navigate breast cancer and their jobs. It was very difficult.
I am the 5th of six women in my family diagnosed, the 6th person was diagnosed two days after me. The interesting thing is the six of us had different cancers and were diagnosed at different stages too. Two were diagnosed at stage 0, two at stage 1, and two at stage 3. We all had different journeys. This cohort includes my mother, who was diagnosed at the height of COVID in 2020 in New York City, where COVID was ravishing the city. She was 77 at that time and diagnosed with Triple-Negative Breast Cancer, which you typically don't see with anyone that advanced in age. It's typically someone quite younger.
Clare Dougherty: To be clear, are these your cousins or sisters?
Carine Mathurin: So, there's my mother, her oldest sister, her daughter, my mother's other sister was not diagnosed, but her daughter was; she was one of the two diagnosed at stage 3, and then my mother's cousin was not diagnosed, but her daughter was; that's the one who was diagnosed two days after me.
Clare Dougherty: In our discussions, you talked about the issue of consistency of care and the sort of information, or even just the directives, that each of you received through your detection, your diagnosis, your treatment, and your care. Clearly, you were getting different guidance, which opened up a conversation around patient-centered care and standards. It is not as standardized as you would like to see. Can you talk more about this experience and how it impacted you and your family members? Also, what would you like to see change?
Carine Mathurin: Let me first remind you we all had different cancers, so the treatment protocols could not be the same. I understand that; however, what was inconsistent was how we were each managed through the experience.
Like many women, when most of my family members were diagnosed, they were told, this is what you have, then they were presented with a treatment plan and were then told, this is what you're going to do. As opposed to what I experienced largely because I am a very comfortable self-advocate, which was - this is what happened; this is what it means; these are your options; what do you think? How could we best help you actualize your health outcomes and goals? Which was not what happened for many of the women in my family.
We're all professional women, and two of the cohort are clinicians, so the conversation with my cousin, who was a physician, was very different. Her treatment was right away because she was a staff member at the hospital. Her process was seamless and without lag. But the rest of us experienced long delays from one step to the other. That in and of itself is unacceptable. Because of her proximity to care, other clinicians, and others in her medical community, she could access care immediately, but even so, she wasn't explained everything in detail. She was assumed to have known so many things that she actually didn't know because she was now the patient, not the caregiver. There were gaps even in what was communicated to her. She found herself having to do her own research to seek resources and support.
I am troubled by how much is not shared with women, and I think more needs to be done in the space of education and prioritizing what the patient wants. I'm not saying we bypass dire immediate critical needs, but too many times, the patient is not asked, what do you want to do? Best case scenario, the patient is presented with a couple of options, and then we just jump into protocol. There isn't room for discussion or variation, which is unacceptable.
Clare Dougherty: A few things that you've said really resonate. First of all, the idea that you were a comfortable self-advocate, and I think something that is core to what we try to do here at the Brem Foundation is to provide education so that women can self-advocate; because I've not gone on this journey, my mother did, and as you're saying it's the most overwhelming time of your life. There's so much to know and to understand. So, in terms of education, not to put you on the spot, what would be better for patients to know and perhaps how best to educate patients as they go through this journey?
Carine Mathurin: I think patients need to understand really simply, what does this diagnosis mean and what are my options? What is the data saying about my clinical outcomes if I go one way or another? I think women are comfortable making decisions if they understand the totality of what a decision could mean. You cannot make a well-informed decision if you're not given the full body of information. I think that's wrong, especially at the height of extreme anxiety because, let's face it – in this world, you hear cancer, you think death. You don't think there are levels to your cancer; there are options that could be considered, and with those options, there are different potential outcomes. It takes time; perhaps the healthcare system is overwhelmed, and time is not abundantly available. But that said, it's still inexcusable to me that a woman would not be given the full breadth of understanding of her diagnosis and what all her options may mean today and subsequently. Then, allow some time for her to process, ask some questions, and make a decision. But to have this disempowered stance where the clinician or the practitioner is the one with all the answers as opposed to a woman understanding, wait a minute, I'm the focal point, I get to say what I want, but I need to know what my options are so that I can make that decision.
Clare Dougherty: I think you're making a fantastic case for this whole idea of patient-centered care. As you're saying, I think the healthcare system, unfortunately, in many ways, is not necessarily built that way, but we need to be moving in that direction to ensure that women have an optimal experience during a time of life that is really challenging - not just physically but emotionally draining for them and their family as well. I was wondering, Carine, if you would be comfortable just sharing a little bit with us about your journey about what stage your cancer was and your treatment journey because I think just as people learn more about what other people went through, people who are generous enough to share stories like yours really can help empower other women during their breast cancer experience.
Carine Mathurin: I was pretty fortunate I was diagnosed at stage one. It's still scary; although I'm on this side of things, it still brings some heaviness to me when I recount it, and I'm extremely humbled by where I am today because I know everyone doesn't end up here.
Because my mom had been diagnosed in 2020, I was on heightened alert, and I already had family members who had been diagnosed. So, I went for a mammogram in August 2020, and I had a history of benign cysts. So, since then, I was supposed to have a diagnostic mammogram, which is the mammogram along with the ultrasound. But in this particular experience, I was rushed. My mammogram was rushed, and I didn't have the ultrasound offered. So when I asked the technician, well, what about the ultrasound? She said, your doctor wrote to do it if indicated. Meaning if anything seems suspicious, then do it. But I said that's the whole point of having the ultrasound, especially post a benign episode, because the mammography doesn't pick up everything. So, you want the ultrasound to be standard all the time, not only if indicated. But it was COVID, 2020, so it was like a gift to get in for a mammogram. So I was shooed away, and I am not using that word to be comical. I was shooed away like, ok, you’ve got to get out of here now; you should be glad you're getting this. It didn't sit well with me.
So, in early 2021, I started seeing a new primary care doctor. I shared with her my experience the summer before and my mother's experience with Triple-Negative Breast Cancer. At that time, my mother was actively going through treatment. I told her I felt rushed and I didn't like that experience. Honestly, I'm not sure. Being a woman of color, you never know if it is just the way things are at this practice right now or if you are being treated this way because you are a woman of color. My physician happened to be a woman of color, and she said sometimes, you're not wrong to ask the question. How about I send you someplace else? Let's repeat this mammogram. It's a screening, and your insurance is going to cover it.
However, when I arrived for my mammogram, I was denied the mammogram because they had not seen me before, and they wanted the films from my previous place to do a real comparative study, but the previous place had not sent it as requested. So I had to reschedule. But, when I returned to the rescheduled effort, my previous films still had not been submitted. However, the new place said they wouldn't send me away again. They agreed to provide the mammogram but were very aggressive with imaging because they did not have a baseline to compare my report to.
Mammograms are not fun, and I mean, I was pulled and tugged everywhere, but the technician left, and the doctor came there. So I knew something was amiss at that point, and she said, well, I'm glad we didn't send you away. I asked, why is that? She said you have a suspicious mass. I said, what do you mean a suspicious mass?
The fact that she used the word mass as opposed to lump just put me in a different space. Like, oh my God, something is going on. She asked me to please go to where I'd first had my mammogram and get my films because she wanted to do a comparative study, but she was also telling me to schedule a biopsy before I left to get the film. I did everything that I was asked to do, which in and of itself is also, I think, unkind. The weight fell on me.
You've just told me I have a suspicious mass, but then I have to go and track down these films, and I'm thinking, what does this mass mean? Could there have been a more seamless way for institution to institution to engage as opposed to putting me, the anxious patient with a suspicious mass, through this arduous task of leaving and having to go track this material down?
All was done. The biopsy was scheduled and happened, and while on the table having the biopsy, I was told, ‘well, you have cancer.’ I remember saying, you're not even going to wait for the lab results to come back. She was quite lovely; all my caregivers have been lovely, and I think it made a difference. She said, listen, your margins are irregular. When you see more irregular margins in this way, it's clearly indicative of cancer; your lymph nodes look good, though.
So I said what does that mean? Does that mean it's early? She said, well, listen, I would have liked to find this much smaller, like at .5 centimeters, you are at 1.2 centimeters, but I've also found women at 7 centimeters, so she provided context, which was very helpful. She said, let's wait for the lab results to come back for more details, but you need to find a breast surgeon. And truly, I was at a loss. I don't know who to call! I don't know what to do; I don't know who's good at what. What am I going to do, some Google review checks? Like how do you do this? So that felt wrong to me.
There's so much weight put on the patient to make these critical decisions, but there's no universal system to help facilitate that for a patient. So, I did what I was supposed to do and found a surgeon with the help of my primary care doctor, and the rest is history.
Clare Dougherty: Well, thank you for sharing that. It is very interesting to hear how it was discovered. In particular, hearing your story as it played out during COVID, who knows if that first mammogram situation would have gone the same if it was in COVID, but the whole idea that you were rushed and you added the referral for the ultrasound and weren't given it and had to track down your films…there's a lot in that story. As you said, things could have gone much more smoothly, and the patient’s needs probably could have been prioritized in a better way. Because we're on this particular topic, I wanted to talk about patient navigation. I know that's something that you feel strongly about and its importance. I wanted to ask you about your experience or your family member’s experience with patient navigation. I know at the Brem Foundation, as we work to help women and underserved communities with our programs, we rely very heavily on patient navigators because they often are so in tune with what patients are going through in ways that we know we're not. So, I just wanted to get your thoughts and perspective on that.
Carine Mathurin: I am a huge proponent of patient navigation. I think it's absolutely critical and a very valuable resource to have. My mother had a nurse navigator, which, at times made a difference. Although, you have to remember it was the time of COVID, and I think health systems were overwhelmed. While she was at a wonderful place receiving excellent care, my sister and I jumped in to be the navigator because her navigator was sometimes difficult to find and slow to respond. I don't think it's indicative of the type of professional she was; I just think that the time was such that everyone was overwhelmed. So, my mom was lucky enough to have two daughters who are very comfortable asking questions, moving things along, and advocating for her.
I recall my mom had to have her port inserted for chemotherapy, and they wanted to do localized anesthesia. My mom was 77; why put her through that? Give her some twilight or something to put her to sleep. The nurses said, oh, we don't do that here. My sister and I successfully advocated, and she was able to have sedation. It was comfortable; she came out of it just fine, but what happens to the woman who doesn't have two daughters to push? That's not right. This shouldn't be a treat or an added gift. Everyone should have access to this and be given that option. Who wants to be up to have surgery? Nobody wants that. To me, that is just cruel. And my cousins didn't have that option either, and that's just so wrong.
Fortunately, I didn't have chemo. I was able to have a lumpectomy and subsequent radiation, but the unevenness makes it so unacceptable. We need a more level playing ground. With more navigators available, these types of discussions and options become all the more ready for all patients. I had a really hard time connecting one system to the next. I had to find a surgeon, but then, guess what, you have to wait for your biopsy results to come back, and then the typing to come back, and I can't get in to see the surgeon until I have this information… but then my cancer is just advancing (or so I thought). There was no one there to educate me, to tell me it's okay, you have time. There's no one connecting the dots at the same time.
I also had to plan for surgery. What was that going to mean? And then I had to do the genetic testing, but how do I find that person? Well, this person is recommended, but this person has a two-month wait list. Well, I can't wait for that… and then okay, you need to also find your oncologist. How do I do that? I haven't even had surgery yet. There was no one to connect the dots for me. I had to do it myself while also planning for surgery and having to go out on short-term disability. Well, guess what? The disability folks wanted information too, and it was confusing. It was daunting, and there was no one to help me. There was no one there to help say this is what's probably going to happen; this is what you'll need; we have a package here to help facilitate this for you because none of this is clear. That's the thing. It's been going on for years; we know the next steps.
It's time now that we have the people in place to help support a woman through the process. Provide support without the patient having to go back to square one with each new engagement. As empowered as I am, there were moments in this process where I wanted to say forget it, I'm not doing this. I didn't, but I wanted to. So, now I understand when women have, in quotes, ‘fallen out of care.’ Did they really fall out of care, or was the system so daunting and complex that it made it difficult for them to access care? That burns me; I get so angry. And what do we do? We stereotype certain groups of women because they've decided that, you know what, it's too difficult. I've got other things that I've got to manage and can't do all of this. No, we say they're hard to reach or they don't want to follow through. Stop it. The system is broken, and we need to fix it.
Clare Dougherty: What you're saying is so on point. I was with some people yesterday up in Rockville who are working hard through their system to try and reach women with services. But they did talk about a growing body of women who say, I can't deal, and I can't do this. You provide such an important window into that because, as you're saying, people could say, I don't understand that. Why would they not do it? Well, suppose you've come up against hurdle after hurdle, and you already have complexity in your life with your family or your income or who knows what…all women have different challenges going on in their lives. In that case, you can see why it would be an overwhelming process for many women. It sounds like you did not have a patient navigator.
Carine Mathurin: I did not. I was my navigator.
Clare Dougherty: It's a reminder that women… I mean, you are a successful woman with a lot of resources at your disposal, and if you felt that way, Carine, I just can’t imagine what the average woman feels, and that's part of what the Brem Foundation is trying to do. We're trying to find the women that are slipping through those cracks. As I said, we don't locate them; we work closely with partners with deep roots in the community so that they can help us find the women, and then we plug in with resources to help remove some of those barriers, whether they're financial or whether they're systemic to get them to their screening appointments or their diagnostic appointments so that they have a fighting chance to catch their cancers as early as possible. It is fascinating to hear this perspective and your voice is so important to raise this.
I also really like your point about how there is no package that says, this is what you should do, and there is no one to walk you through those packages to say, well, for your situation and where you are, the state of cancer or the type of cancer, this is what we recommend. I think these are really important points, and as you know, we engage with different bodies, the US Preventive Task Force, and others. This is really important feedback that we can take to them to let them know that these are the things that, as an organization, need to be prioritized.
You mentioned genetics, and I wanted to talk a little bit about genetic testing. What did you and your family choose to do, and what takeaways do you have around genetics and genetic testing relative to your and your family's cancer journeys?
Carine Mathurin: It's interesting that we're talking a lot about BRCA as it relates to breast cancer. One of the women in the cohort of six in my family did not have any testing and genetics panel because she was diagnosed about 20 years ago. At that time, it wasn’t standard practice to do so. So we don't know what she had, but she's 88 today, so I'm inclined to think she didn't have a panel done and is likely not positive for BRCA one or two. However, her daughter has since been diagnosed, and she was one of the ones diagnosed with stage 3, but her full genetics panel was also negative.
All of the women in my family, my cousins, my mother, and myself, were all resulted with negative genetic panels, but the question is, is there something? Because I believe there is something, I don't think science has yet caught up. There's something about having six women, with the same bloodline; we call it the three sisters because it's the offspring of one of these three sisters; all of us have had breast cancer, either their daughters or granddaughters. That's sad though - How much research is being done in communities of women of color; I don't think it's happening to the degree that it needs to. There is still much to learn.
Even after sharing with the genetics counselor my robust family history, I would have thought that maybe there's some sort of follow-up they might want to have with my family. I'm telling you we're all alive, you know we're all here, we're all eager to learn more, but there was no, well, maybe we should talk to you all a little bit more. So, I don't know how widespread that is if I just use my family as a proxy for what is going on in the larger world. We're missing opportunities to learn more and better diagnose and treat. So, I'm concerned about this type of dynamic. I mean, we know what we hear, and there is some effort happening on the treatment side, like trying to diversify clinical trials and such. There is a pointed effort in bringing people of color into that space. But I think we need to go a step back and go back to some of the genetics to look at what might be needed to sort of interrupt some of these cycles. We can diagnose cancer a lot earlier or prevent it altogether if we understand some of the genetic mutations that are happening or your proclivity to them. So it's really concerning for me.
Clare Dougherty: I will say, Carine, when I met you, and you told me your story about the three sisters and all of you coming together to support each other and that none of you tested positive for the gene, it seems obvious there's likely something genetic going on here. I'm not a doctor; that's my lay opinion. So, I think 100% your story and your family story get to the heart of what we are doing to try and understand that better.
You and I both know that in the US, black women are dying at 40% higher rates than white women from breast cancer, and it's really unacceptable. I think we at Brem Foundation are working very hard to raise awareness and address this. In fact, the United States Preventive Task Force came out with draft guidelines this summer, and we were pretty unhappy with them. Part of it is because we feel strongly that while they recommend that women start screening at 40, they don't call for annual screenings; they call for biennials, which we think is problematic. But beyond that, we are very concerned that they don't call for risk assessment for black women starting at age 25. The American College of Radiology just came out saying high-risk groups, such as black women and Ashkenazi Jewish women should start risk assessments at 25. We're not saying you should start screening at 25, but why not have a risk assessment, which could then help you and your provider decide if you are high risk at 25 and help determine when you should start getting an annual screening? So I hear you, and we will continue using our voices in advocacy.
I know there are many organizations out there, as you're saying, pushing on the clinical trials and widening black women's participation, which I think is crucial. Brem will keep pushing forward on how we get black women screened earlier because we know it will save lives. It's a no-brainer, so why are the guidelines so inconsistent and confusing on these issues? It's just a really important thread for us all to continue to follow, and for you, it's beyond a policy issue; it's personal, and it's your family. We really appreciate you using your voice on it.
Are there any other things you would like to share about your journey or experience with us before we close our conversation?
Carine Mathurin: I just wanted to share that I really appreciated receiving care from so many female practitioners. There was an extra level of sensitivity there. One did disclose that she had her own breast cancer journey. The others may have seen the potential for it to be them one day, so, to the degree possible, I'd love to see more female radiologists and more females in this oncology space because it made a difference for me. There were sensitivities that I don't mean or want to stereotype… but a man doesn't have these mammary glands as ours present, and I really appreciated that. I don't take that for granted.
Clare Dougherty: We're lucky at Brem Foundation, named for Dr. Rachel Brem, the leading breast imager at GW, and she partners with Dr. Christy Teal, the leading surgeon. I think that is part of why they have such a thriving practice. They show empathy and they're understanding. Rachel is a survivor, and Christy Teal has had many people close to her who are survivors. Not just to talk about them, but they're top of mind for me because what you're saying is so true and meaningful. Like you're saying, it's not to paint a broad brush, it's not to say that all men aren't good at this, but the idea that more women should go into radiology and should be helping to guide the processes, protocols, and the ways we can be putting patients first in this incredibly challenging journey. We need to look at these things in the breast cancer and policy field. As we head into RSNA - the radiology meetings, these are really important things that we should have front of the line in the discussions.
Anything else you’d like to share?
Carine Mathurin: I just want to thank you for letting me share my story and my family's story. Many of the women in my family, including myself, are poster children for early detection; as I told you, two were stage 0, and another two, stage one, and our outcomes were quite favorable. So it's wonderful that you and your organization are doing what you do.
Thank you to Drs. Brem and Teal, and I really appreciate you taking the time to talk with me and hear what the experience was like for me personally. I hope this could be helpful to someone.
Clare Dougherty: If we have additional questions, which we might, I'll follow up with you, but for now, I'll say thank you.
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