Understanding Your Risk Through Genetic Counseling and Testing

[00:00:00] Adam Walker: In honor of National Breast Cancer Awareness Month, if you’d like to join the fight against breast cancer, please go to www.Komen.org to donate today.

We need to talk about Black breast health. Black women are about 40% more likely to die of breast cancer than white women, diagnosed at younger ages and later stages, and with more aggressive breast cancers, leading to poorer outcomes. This monthly podcast series Stand for H.E.R. – Uniting to Create a Health Equity Revolution, opens a national dialogue that engages community members and organizations, healthcare providers, research scientists, and opinion and policy leaders to discuss recommendations and actionable strategies to advance breast health equity in the black community.

This episode of The Real Pink Podcast was brought to you by AstraZeneca. AstraZeneca is leading a revolution in oncology with the ambition to provide cures for cancer in every form.

Following the science to understand cancer in all its complexities, to discover, develop, and deliver life-changing medicines to patients. Learn more at astrazeneca-us.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.

Everyone is at risk of breast cancer, but some are at higher risk than others. Understanding your risk starts with learning about your own risk factors and starting a conversation with your doctor.

Gathering your family health history to know your risk of developing health problems can help you determine whether you pursue genetic counseling and testing. We’re going to discuss these topics in depth today with Natasha Mmeje, Komen’s Director of Community Education and Outreach.

Natasha, welcome to the show.

[00:02:03] Natasha Mmeje: Thank you.

Thanks for having me, Adam. I’m excited to be here.

[00:02:07] Adam Walker: Well, this is a really important topic and I’m glad to learn a little bit more about this, cause we haven’t talked about it a ton on the show. So, let’s dig in here. Let’s start with, family health history. Why is it so important to know your family health history when it comes to breast cancer risk, especially for the black community?

[00:02:29] Natasha Mmeje: Absolutely. So our families can be such an important part of our lives, and when we talk about breast cancer, the most common risk factors for breast cancer are one, being born female, and two, getting older. Those are two things that we really can’t change. For some people though, there’s some other risk factors such as a history of certain cancers that might run in their families, whether or not they know about it.

And I think that that’s the key part. Knowing your family health history can empower you to begin to take charge of your breast health in a different way, and not having a full understanding of that, of that family health history is sort of like putting together a puzzle without having all of the pieces.

All too often we don’t talk about this in our families and we know that having these kinds of conversations can end up saving someone’s life.

[00:03:23] Adam Walker: Yeah. I mean that, that’s totally right. And so having these conversations is not, always easy. And I know that’s a struggle for a lot of our listeners. So what are some tips and advice you might have for listeners to start these conversations with their families?

[00:03:38] Natasha Mmeje: Yeah, you’re right. These kinds of conversations are not easy. And I’ll say it’s especially not easy within the black community, where these kinds of conversations are often taboo or considered private matters. So we should not talk about them. I will say there’s no special way to have these conversations.

Sometimes you just kind of have to dive in. But I would also say, knowing your family dynamic is really important. So, being considerate of the types of dynamics that happen or exist in your family is really gonna be key. So, these conversations are really meant to help, and I think that’s a good place to start from.

So if the dynamic in your family is, “we don’t talk about this”. You might wanna start with a close relative, that you trust or somebody who can kind of

unlock a little bit of that family health history first. So they should know what, why, you’re trying to do this and why it’s important to you.

I’ll say for me, that was my mom. My mom is a seven year breast cancer survivor, and we didn’t have a lot of the information about our family health history either. We didn’t know if she was the first one diagnosed. So I asked her, Okay, from the generation that’s before you, which of those family members might hold the key to this kind of information?

For other families though, who talk about everything, you might find a good time when everybody’s together like a family reunion, or during the holidays to bring it up. And that might be a really interesting way to collect lots of information.

[00:05:13] Adam Walker: You know, I like what you said there, just kind of being aware of your own family dynamics.

I think a lot of times, we sort of try to phrase these conversations from our perspective, and from our own awareness and maybe it’s better that we look at it from the other perspective and really understand those family dynamics and how we might be perceived as we, have these conversations.

So, are there tools and resources that you can recommend to help listeners map out their family health history?

[00:05:41] Natasha Mmeje: Absolutely. Actually, there’s a great family health history tool that can be used to gather this kind of information. It’s great because you can add the health history information and save it as you continue to have more conversations with your family members.

And it also maps out the health history for both sides of the family. So it’s really important, I’ll say here, to include men, in all of these conversations to continue to include men. This is not just a women’s issue. But that family health history tool that I mentioned can be found on the Komen.org website.

[00:06:17] Adam Walker: Right. So Komen.org and we just do a search for family health history tool. Is that it?

[00:06:22] Natasha Mmeje: Yes.

[00:06:23] Adam Walker: Okay. Fantastic. I love that. I did not know that, that tool existed, but that seems incredibly important and I’m so thankful that it does.

So, if a conversation does raise a concern about risk of breast cancer in the family, such as an aunt passing away from breast cancer, what are the next steps that a listeners can take to learn more about their own risk?

[00:06:46] Natasha Mmeje: Sure. So chances are these conversations will lead to learning things you didn’t know about your family health history. If you learn that a family member passed from breast cancer or some other type of cancer. You could talk with your healthcare provider about what you’ve learned in that conversation.

If you find that you might be at a higher risk, your healthcare provider or your doctor can recommend maybe that you consider genetic counseling and genetic testing.

[00:07:16] Adam Walker: Okay. And so what is that? So can you explain more about what genetic counseling and testing is? Like and, what is that process like when someone decides they wanna pursue it?

[00:07:29] Natasha Mmeje: Sure. So I know it, seems pretty daunting, but genetic counseling is a discussion with an expert in genetics. The discussion really can help you determine whether genetic testing is right for you, because it’s not right for everyone, and that’s important to know. A genetic counselor can also discuss the risks and the benefits of genetic testing, and then talk about the results of that test at the end of all of that, and provide you with more information on ways to help you reduce your risk.

Especially if you have an inherited gene mutation, that’s found during genetic testing. So I’ll, unpack a little bit about that because, this is pretty technical. So genetic testing looks for the most common changes. So the changes are also called mutations, in your genes, that might be linked to breast cancer.

And they collect this through either blood or a saliva sample. That genetic testing gives people the chance to kind of learn, if they’re breast cancer, or their family history of breast cancer is due to that inherited gene. Meaning from your family, right? And what the changes are in the genes in your dna.

So the inherited gene mutations, they’re passed down from your parents. So, mother and father down to their child. But what we know, and what’s important to know here is that only about 5 to 10% of breast cancer cases are thought to be hereditary. But for the people who have a hereditary cancer, it’s important for them to know that information, because they can do something about it.

It’s best to have this type of genetic testing done in a clinically approved lab, that’s certified by a body called the Clinical Laboratory Improvement Amendments. It’s called CLEA for short, and you can get this testing from your doctor or from your genetic counselor.

[00:09:29] Adam Walker: Oh, okay, fantastic. I did not know that, but now I know to look out for that, so I appreciate that.

So what are some other questions someone could ask their doctor when exploring whether or not to have genetic counseling and testing?

[00:09:42] Natasha Mmeje: Sure. So some of the questions to ask are just, would I benefit from a conversation with a genetic counselor in the first place, based on my risk. And then what kind of things could I learn from genetic testing, if I do that?

What do I need to know before I get the testing? What does my family need to know? Because we know that this is not just a conversation about, you individually. It is also about your family. How much does it cost? Is it covered by my insurance? And then so what happens after the genetic testing? You know, and what happens if I find that I have a genetic mutation?

Does that mean I’m going to get breast cancer? These and lots of other questions, we actually have a tool on Komen.org called, Questions to Ask Your Doctor. It can really set the stage ahead of time. So you can plan out what you wanna say, how you wanna say it, and then you can also write down the answers to those questions.

[00:10:43] Adam Walker: I would imagine that going prepared with some questions written down is probably pretty important, because I feel like once you get into a doctor’s office in that environment, you might tend to go a little bit blank, right? And so being prepared, preparing for the meeting sounds really critical. Is that, is that right?

[00:11:00] Natasha Mmeje: Absolutely. I think it really is, because there, it can be overwhelming to hear a lot of responses and a lot of information, especially about something like genetic testing, that may be harder to understand. So going in ahead of time with questions is really great.

[00:11:18] Adam Walker: Okay. Now, there are barriers that restrict access to genetic counseling and testing services in Black communities.

What are these barriers and what is Komen doing to address them?

[00:11:31] Natasha Mmeje: Yes, you’re right. There are definitely barriers here. So one of them is, one of the barriers to genetic testing is the lack of knowledge and communication about genetic testing just overall, in the black community.

Black people in the US don’t participate in genetic testing in the same, at the same rates as white Americans do. And that lack of communication that I mentioned, it’s due to two different pieces. One, providers may not be discussing this, discussing genetic counseling or genetic testing with the black community.

And then also black people may not know to even ask about this, with their medical providers. And we also have to talk about the fear that exists, in the black community with regard to the healthcare system in general. There is a recorded history of unethical practices within the healthcare system and this might lead to people, being fearful of, the misuse of their genetic information. And it may cause them to feel fear and not want to go through with genetic testing in the first place. So then you ask what Komen’s doing about it. So through Komen’s initiatives Stand for H.E.R., we are increasing access to genetic counseling and testing for black families.

By partnering with organizations to make the genetic counseling and testing available to people who might be at higher risk. We’re also working to get tailored educational information to the black community so that they can feel empowered to ask the questions that we talked about earlier, of their medical providers.

[00:13:11] Adam Walker: That’s fantastic. I love that work. It’s so important. So let’s say that genetic counseling and testing showed that someone has a mutation of the BRCA1 or BRCA2 gene. What are the next steps that they could take in terms of managing their risk?

[00:13:27] Natasha Mmeje: Sure. So B R C A one and B R C A two gene mutations are the most well known gene mutations.

And people who have these mutations are at increased risk for certain types of cancers, including breast cancer. So not only breast cancer. There are special screening guidelines for people who are at higher risk. So it’s important that you really talk with your doctor to learn more about what your options are.

You can also talk with your doctor about risk lowering options. There are things such as risk lowering drugs or prophylactic mastectomy, which is the removal of both of your breasts to prevent breast cancer. And that’s really important. So the prophylactic piece of that is important. You may also want to get a second opinion.

And I think that, that’s valid and warranted because some of these risk lowering options can be a little invasive or very invasive. It’s important to know that you, are in the driver’s seat, and you should feel empowered to ask any questions you need in order to feel informed, to make the best decision for you and for your own health.

[00:14:36] Adam Walker: That’s right. That’s right. You are in the driver’s seat for your help. So where can our listeners go to learn more about genetic counseling and testing?

[00:14:46] Natasha Mmeje: Sure. So, for more information on genetic counseling and testing, you can go to Komen.org/blackgct to learn more about specifically genetic counseling and testing in the black community.

And you can go to Komen.org for additional information.

[00:15:04] Adam Walker: That’s fantastic. Well, Natasha, I appreciate the work that you’re doing. Thank you for joining us on the show to break this down for us and just thank you for being here today.

[00:15:13] Natasha Mmeje: Thank you for having me.

[00:15:16] Adam Walker: Join us as we Stand for H.E.R. to drive a Health Equity Revolution where we’ll create a world without inequities where Black people can have the same chances of surviving breast cancer as anyone else. To learn more about Stand for H.E.R. and advancing breast help equity at Susan G. Komen, please visit https://komen.org/StandForHER.

In honor of National Breast Cancer Awareness Month. If you’d like to join the fight against breast cancer, please go to www.Komen.org to donate today.

This episode of The Real Pink Podcast was brought to you by AstraZeneca. AstraZeneca is leading a revolution in oncology with the ambition to provide cures for cancer in every form, following the science to understand cancer in all its complexities, to discover, develop, and deliver life-changing medicines to patients.

Learn more at AstraZeneca-US.com.

Thanks for listening to Real Pink, a weekly podcast by Susan G. Komen. For more episodes, visit realpink.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 @AJWalker or on my blog adamjwalker.com.