[00:00:00] Adam Walker: 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.
[00:00:17] Welcome to the Real Pink Komen Health Equity Revolution podcast series. Each month we invite in patients, community organizations, healthcare providers, researchers, policy advocates to discuss strategies and solutions that drive the health equity revolution forward for multiple populations experiencing breast health inequities.
[00:00:36] Today we’re diving into a topic that could change lives, genetic counseling and testing. It’s one of the most powerful tools we have to assess breast cancer risk. But not everyone knows about it or has access to it. Joining me is Fanny Jackson, a patient navigator with Susan G Komen, who helps people calling into the Komen Patient Care Center get the support they need to understand their risk and navigate what’s next.
[00:01:01] She’s here to share her firsthand experiences, break down barriers, and show us why this work is so vital to advancing health equity. Fanny, welcome to the show.
[00:01:12] Fanny Jackson: Thank you so much, Adam, for having me.
[00:01:14] Adam Walker: Listen, I love talking to patient navigators. Like I, I feel like y’all, y’all are just angels out there just helping people through the mud and the muck that is, uh, trying to get the care that they need.
[00:01:27] And so I just, I thank you upfront for what you do because I think what you do makes an enormous difference not just to patients, but to their families. And, and they, they’re supporting communities. So you’re an amazing person already in my book, so thanks for being here. Um, but let’s, alright, let’s start with the basics.
[00:01:44] So, what is genetic counseling and testing and how can it help someone better understand their risk for breast cancer?
[00:01:53] Fanny Jackson: Okay, so I just, let me just disclose that I am not a licensed clinician, neither am I a licensed genetic counselor. But what genetic testing, um, is, is that it gives people the chance to learn if their breast cancer or family history is due to an inherited gene mutation, or individuals with cancer diagnosis.
[00:02:14] Genetic testing can help guide treatment. For individuals without a diagnosis, genetic counseling and testing serves, it can be recommended for individuals without a diagnosis. Genetic counseling and testing may be recommended if they meet certain risk factors or if they share about family history of, of cancers.
[00:02:34] Um, and this is helpful because it can help provide valuable, um, information about the inherited conditions. Mm-hmm. And help guide strategies for like early detection and preventions.
[00:02:45] Adam Walker: Oh, that’s great. Okay. I, I appreciate you kind of walking us through that. So, all right. So, so back to sort of what you do daily.
[00:02:52] Uh, you’re at the, the Komen Patient Care Center. What typically happens when someone calls in to the Patient Care Center with questions about genetic counseling and testing? Like how, what do you tell them? How do you help them?
[00:03:05] Fanny Jackson: So our Patient Care center, uh, has navigators that will help patients by
[00:03:10] identifying information related to genetic testing and counseling will provide education around the same and breast cancer risks. Uh, will provide health education on possible risk reduction methods for those that may have genetic mutations but have not been diagnosed yet. Um, we’ll help identify resources that may alleviate some of the barriers to care.
[00:03:34] And, uh, we’ll help also generate questions, uh, or generate a list of questions to help facilitate a conversation with their care team, um, and identify any self-advocacy opportunities. So we definitely try to empower patients, uh, to be able to have those conversations um, that are important, right? Yeah. And then obviously we’ll help provide emotional support around, uh, the diagnosis of an inherited gene mutation.
[00:04:01] Adam Walker: Hmm, okay. And, and so when you say counseling, like what does that mean exactly? Like is it, is just giving information or like, well, like tell me more about that.
[00:04:10] Fanny Jackson: Oh, most times, to be honest with you, patients, um, lack awareness. Um, so just pretty much we ask the question, you know, it’s, you know, if if they’re specifically calling for a specific need around this, uh, then we will provide the resources and it’s all evidence-based information that we can help equip them with.
[00:04:33] What questions to ask their team, their care team, because again, we’re not licensed clinicians. Uh, but for individuals that are not aware, then obviously we’ll take that opportunity to help educate them. Um, and for those that do have a diagnosis and are worried about the results they receive, and they may not have had the opportunity to ask the questions on how to share that information with my family.
[00:04:56] So we help guide them through those conversations that are very important. This information is important to share with your family.
[00:05:04] Adam Walker: Right. Okay. And, and so, and you know, I know callers are calling in, right? They’re, they, they wanna get help. They probably feel overwhelmed. Maybe they’re not really sure about what genetic testing is, how it’s done.
[00:05:16] Like, they’re like very wary. Right? I, I would imagine, um, how do you build trust? How do you break that down for them?
[00:05:23] Fanny Jackson: Sure. So, so our team is you know, very culturally competent navigators. Mm. And our team helps provide a safe space for patients to express their concerns without judgment. We let them know that they’re not alone.
[00:05:38] Uh, we do active listening. Uh, that means we truly are, you know, are hearing what you’re saying. Mm-hmm. And we educate them. We educate our patients with the important information and genetic testing plays to provide patients with the information that they need, uh, to understand their treatment plan because like I mentioned, um, you know, providers utilize this information to, to create or to tailor a care plan that, uh, will be most effective.
[00:06:12] Um, so, you know, there’s benefit in knowing this information and sharing this information with their families.
[00:06:18] Adam Walker: Yeah, absolutely. So, uh, in your experience. What are some of the most common myths or misconceptions people have about genetic testing?
[00:06:28] Fanny Jackson: Uh, well, there, there are many I’m sure, but I can think of about five.
[00:06:33] Adam Walker: Okay. All right.
[00:06:33] Fanny Jackson: Um, and I’ll share those. Mm-hmm. Um, one of them is that most cancers are, you know, due to an inherited risk, which that’s false. Um, you can be the first one in your family, uh, to have a, um a breast cancer or a cancer diagnosis.
[00:06:53] Adam Walker: Right. Right.
[00:06:54] Fanny Jackson: Um, the second is if you have an inherited cancer risk, you are guaranteed to get cancer.
[00:07:00] Absolutely not. Um, you can have that, you know, we know that, you know, there’s ways, and there’s a reason why this is important. It’s because we take steps to help reduce the chances of that happening. Mm-hmm. But that’s not true. Right. Um, this just simply means that there’s a specific gene that is not working the way it was meant to work, and it just means that you’re born at a higher risk.
[00:07:23] Hmm. Um, and the third one is genetic testing for cancer risks is only for women.
[00:07:31] Adam Walker: Hmm.
[00:07:31] Fanny Jackson: Not the case. We know that even though there are fewer, uh, cases of male, uh, breast cancer, um, it does, it exists. Mm-hmm. And everyone is at risk. Right. Um. And then the other one, four is that the BRCA1 and BRCA2 are the only genes related to breast cancer.
[00:07:52] Adam Walker: Mm-hmm. Right.
[00:07:53] Fanny Jackson: That is not true. Those are just the two most common. Right. Um, and then the last one that I can think of is that, uh, you only need testing if your doctor tells you if you need screening. No. Um, you, that’s why, again, it’s very important to know your family history. Um, you know, they’re, we know they’re busy.
[00:08:14] They have a lot of patients and that’s not an excuse, right? However, uh, we need to be empowered, again, with the information and the knowledge to be able to share this information so that that can raise a red flag, Hey, and then it kind of gives them, you know, the, um, information they need to make that recommendation.
[00:08:32] But still, it is… always know that it’s what we do to take charge and to take control of our care and our health. And it’s important that you advocate for yourself. So don’t just rely on your provider. Um, obviously they’re great and um, they have a great team, but that is not true.
[00:08:51] Adam Walker: Yeah, that’s right. Yeah.
[00:08:52] And, and, and it gives us more information by which we can use to make better health decisions for, for something. Yes, that’s right.
[00:08:59] Fanny Jackson: Informed decisions.
[00:09:00] Adam Walker: Yeah, that’s right. Informed decisions. That’s right. So, so let’s talk a little bit about health equity. Um, how does a lack of access to genetic counseling and testing impact marginalized communities?
[00:09:11] Fanny Jackson: Yeah. So, um, here at Komen, we believe that everyone should have a just opportunity, you know, to be as healthy as possible. Despite one’s culture or demographic background, lack of access to genetic counseling and testing disproportionately impacts marginalized communities. That leads to decreased diagnosis, uh, diagnostic rates, um, poor health outcomes, um, and increased health disparities.
[00:09:40] You know, disparities are highest amongst the African American communities. Hispanic and Latina women are more likely to be diagnosed with a breast cancer later than white women and uninsured women have lower rates of breast cancer screenings compared to those with insurance, with health insurance.
[00:09:58] Some barriers to this lack of access can you know stem from and can stem from financial constraints, geographical limitations, cultural mistrust, language barriers, and culterally competent healthcare providers.
[00:10:14] Adam Walker: So, all right. So, so then similar, I, I kind of along the lines, I think what you just said are, are, you know, is, I guess I have a question about specific populations, right?
[00:10:23] So like, do you see more challenges among specific populations like Black and Latino callers when it comes to accessing or affording genetic testing? And how do you help address those callers and those barriers?
[00:10:37] Fanny Jackson: So yes, we, we do see it mostly amongst the African American community and the, um, and the Hispanic population and, and mainly, um, because of the, uh, socioeconomic, um
[00:10:54] backgrounds and just the accessibility. Mm-hmm. Um, and, and, and lack of awareness. One of the biggest things, um, that in both, um, communities is very prevalent and is very, um that we see a lot. And, um, the way that we help, um, guide this or address these needs and these barriers is by identifying there are resources.
[00:11:19] There are resources that are out there, um, and we help, um, identify them. And, um, we empower patients to, you know, access these resources. But we go a step further. We don’t just provide a resource, we do make sure that there is a connection and there’s a warm transfer in that, uh, referral, um, to make sure that, you know, they do get access to the care that they need and the information that they’re looking for and the services.
[00:11:44] So quality care that they deserve.
[00:11:47] Adam Walker: So how does, like we’re talking about genetic testing and it helps to inform, you know, the individual about their health to make their own health decisions, but how can it also help them understand the risk to family members as well? And, and why is that important for them to understand that?
[00:12:05] Fanny Jackson: So, discussing your, your concerns with your healthcare provider for guidance. It’s not only for yourself, but this is also useful information for your family. Hmm. Uh, this is, um, you know, the, one of the things that I like to share with my patients because, um, sometimes, you know, it’s difficult, you know, one of another reason is because working and taking time off.
[00:12:27] Um, but I tell them like, listen, you know, this not only helps you, but it does help your future generation. Yeah. Um, and to help educate and to, uh, break those that, that, that, um what is the word? I’m trying to, like taboo conversations. You know, sometimes you don’t have those, uh, you don’t talk about your medical history.
[00:12:49] You don’t, you know, this is private. But no, I tell them that we need to, the only way that we can make a difference and change the future for it to be, um, impactful for our children and future generations is to share the information. Knowledge is power and if we provide that information that we
[00:13:08] are able to learn now, it, it can make a big impact and help reduce those, you know, uh, mortalities, um, that we’re seeing in, in, in these communities.
[00:13:20] Adam Walker: Yeah, that’s right. That’s right. That’s great. That’s great. Now, uh, you’ve been, you know, you help a lot of people. You talk to a lot of people. I’m, I’m curious, are there any stories, you know, related to this topic that sort of stand out to you that you can share with us, uh, you know, in your experience?
[00:13:38] Fanny Jackson: Yeah, well, I mean, I really can’t think of any specific story or moment, but I can just speak on the impact of that it does in our team, that we definitely see in our team about the lack of awareness.
[00:13:53] Adam Walker: Yeah.
[00:13:53] Fanny Jackson: Um, and because again, every case and every story is impactful. Um, you know, knowing and learning that, you know, someone may not have or knowledge of, uh, what resources are available.
[00:14:07] Um, and what, uh, questions to ask or that they can even ask questions to providers. Um, you know, it, it could be very, very tasking. So, you know, as navigators we, you know, make sure that we ask the questions… are you familiar with genetic counseling or genetic testing? Mm-hmm. Um, you know, we made sure that we are the source of empowerment to all patients that call.
[00:14:31] Um, and those in treatment. And for those, for those that are in treatment and for those that do not have a, a diagnosis, you know Hmm. We make sure that they, uh, that this is the way that they can have, uh, those important discussions. And again, with, especially with our Black, um, and Hispanic communities.
[00:14:51] Adam Walker: Mm, yeah.
[00:14:52] That’s right. Alright, so, so Fanny, there’s, there’s somebody listening to this show right now and they’re thinking to themselves, this sounds important. But I have no idea where to start. What do you wanna say to that person?
[00:15:07] Fanny Jackson: I want you to know that you’re not alone. There are a lot of people that you know are not sure, but, uh, know that you’re not alone.
[00:15:15] You have a team here at Komen of culturally competent navigators, uh, by your side. Remember that again knowledge is power. If you do have, um, a. You know, a provider, if you have a patient, um, if, if you do have a, um, primary care physician, that you ask those questions that you, uh, let them know what your, you know, your family history is and know that where you live, your ethnicity, your social economic status should not determine the quality of care that you deserve, uh, that you need.
[00:15:49] Ask again, ask questions. I encourage you to learn as much as possible about your family history mm-hmm. And share that important information with your provider. Um, finally, know that you have, uh, again, a reliable source, uh, with Komen at our patient care center, ready to help educate you and empower you and serve as an advocate, um, on your behalf.
[00:16:09] Adam Walker: Alright, so, so last question. And kind of two parts, right? The first is what gives you hope As you’re, as you’re talking to people, as you’re helping them navigate what gives you hope. And second is why, is like, like give, give me the, the two sentence version of why genetic testing and counseling is so important.
[00:16:29] Fanny Jackson: What gives me hope is that we’re having the conversation. You know that there are platforms that are, uh, available to help have these conversations, these discussions that, uh, will make the change, right, can lead us to change.
[00:16:44] Adam Walker: Yeah.
[00:16:45] Fanny Jackson: And genetic testing or genetic counseling and testing is important because it helps you and your care team understand what treatment plan you need and it helps you also for those who do not have
[00:16:59] a breast cancer diagnosis. It helps you to learn what preventative measures are needed to help you move forward in making informed decisions about your health.
[00:17:12] Adam Walker: That’s right. That’s right. Fanny, uh, you have been amazing. You’re doing amazing work. Uh, thank you so much for joining us on the show today.
[00:17:21] Thank you. If you’re listening and you wanna learn more about genetic counseling and testing, or need help accessing these services, visit komen.org/patient care center or call the Komen Patient Care Center at 1 8 7 7 go Komen. Thank you for joining another episode of the Komen Health Equity Revolution podcast series.
[00:17:45] We’ll continue to galvanize the breast cancer community to support multiple populations experiencing breast health inequities to advance and achieve breast health equity for all. To learn more about health equity at Komen, please visit komen.org/health equity. Thanks for tuning in, and we’ll see you next time on Real Pink.
[00:18:10] Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit real pink.Komen.org. And 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 at AJ Walker or on my blog adam j walker.com.