Cancer Care Connections
Cancer Care Connections
The Important Role Genetic Counselors Play in Genetic Testing
On this week’s episode of Cancer Care Connections, Cheryl Tan discusses with Tifany Lewis, the important role genetic counselors play in the genetic testing process. They also discuss how genetic testing in the oncology setting provides personalized testing based on medical and family history vs the one-size-fits-all approach you get with the direct-to-consumer tests ordered online.
Tifany Lewis, CGC is a genetic counselor with over 17 years of experience in cancer genetics. Tifany obtained a Bachelor of Science degree in Biology from Virginia Polytechnic Institute, Blacksburg, Virginia before completing her Master's Degree in Human Genetics at Sarah Lawrence College, Bronxville, New York. She is board-certified by the American Board of Genetic Counseling.
Tifany currently leads the Genetic Counseling/Hereditary Cancer program at Virginia Oncology Associates. She is an expert in cancer genetics and genetic testing for hereditary cancer syndromes. The work she performs is instrumental in navigating patients through treatment by providing knowledge and understanding of patients’ complex family histories and their risk for cancer.
Topics
What is genetic testing? [3:25]
The role of a genetic counselor in an oncology setting [5:19]
Who is eligible for genetic testing? [6:55]
Where do genetic counselors fit into the genetic testing process? [7:44]
Is genetic counseling offered everywhere you get genetic testing? [8:59]
Genetic testing process [10:05]
Is cancer a genetic disease? [11:02]
Sporadic cancer vs. hereditary cancer [11:40]
What are some red flags for hereditary cancer? [13:16]
Benefits of the information you get from genetic testing [16:01]
Downsides of having testing done [16:51]
Difference between genetic testing in an oncology setting vs. direct-to-consumer testing [17:49]
Where can you find more information about genetic counseling? [21:09]
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Visit Virginia Oncology Associates @ VirginiaCancer.com
Resources mentioned in this podcast
(National Society of Genetic Counselors) www.nsgc.com
(Genetic Program at Virginia Oncology Associates) www.virginiacancer.com/genetic-testing/
Thank you for listening! If you're interested in hearing more from Virginia Oncology Associates, make sure to subscribe to Cancer Care Connections on Apple Podcasts, Spotify, or anywhere podcasts are available, or listen online at cancercareconnections.buzzsprout.com.
Cancer Care Connections is the official podcast of Virginia Oncology Associates. For more information, visit us at VirginiaCancer.com. or find us on Facebook or Instagram at Virginia Oncology Associates.
Episode 4: The Important Role Genetic Counselors Play in Genetic Testing with Tifany Lewis
Intro: (music overlay)
Welcome to Cancer Care Connections. On this episode, Cheryl Tan spoke with Tifany Lewis, the Manager of Genetic Counseling for Virginia Oncology Associates. Cheryl and Tifany dove into the important role genetic counselors play in the genetic testing process. Tifany also discusses how genetic testing in the oncology setting provides personalized testing based on medical and family history vs the one-size-fits-all approach you get with the direct-to-consumer tests ordered online.
00;00;37;09 - 00;01;13;24
Cheryl
Our conversation today is with Tifany Lewis. Tifany currently leads the Genetic Counseling hereditary cancer program at Virginia Oncology Associates. She's an expert in cancer genetics and genetic testing for hereditary cancer syndromes. The work she performs is instrumental in navigating patients through treatment by providing knowledge and understanding of patients' complex family histories and their risk for cancer. Tifany is passionate about patient care, health equity, and accessible genetic counseling and testing.
Tifany, welcome. It's so good to talk with you today.
00;01;13;26 - 00;01;15;25
Tifany
Thank you. I'm very happy to be here today.
00;01;15;26 - 00;01;22;10
Cheryl
I know this is something you are so passionate about.
Tifany
I am.
Cheryl
Can you start by telling us how you got into this field?
00;01;22;15 - 00;02;03;08
Tifany
Sure. So I attended Virginia Tech as an undergraduate student, and I was a biology major. It was there that I learned about genetic counseling as a career choice. It seemed like the perfect combination of medicine, but I also have an opportunity to work very close and personally with patients and their families. So from there, I went to Sarah Lawrence College up in Bronxville, New York.
As genetic counselors, we're trained to work in multiple specialties. But I really found my niche in cancer. Right? And so I started working with VOA in 2006, felt like this was home, and really enjoyed the work that I'm able to do here and have been doing it ever since.
00;02;03;11 - 00;02;27;20
Cheryl
When I hear you talk about this, I just see the word impact and your focus on cancer specifically in regards to genetic testing. You've been able to see so much impact, especially over the time you've been here. It's evolved. Genetic testing has evolved over the years.
Tifany
Yes.
Cheryl
What kind of impact do you feel you've had? And I know the answer, by the way, already to that. I know how you've grown the program here at Virginia Oncology Associates.
00;02;31;28 - 00;03;12;20
Tifany
I feel like we've been able to make a tremendous impact in our community. You know, prior to my arrival, there was not a full-time cancer genetic counselor in the area. So genetic testing was available, but underutilized. And so having a genetic counselor able to build the program really helped increase accessibility and uptake in testing. So we've been able to meet patients, review with them their family history, discuss genetic testing, support them through the genetic testing process, but then also turn around and help them discuss this information with their family so that in some situations, genetic testing has really proven to be lifesaving for our patients and members of the community.
00;03;12;22 - 00;03;25;01
Cheryl
Let's talk very basic definitions. What is genetic testing? And how do genetic counselors help with the knowledge that people get from this testing; from the results?
00;03;25;04 - 00;05;12;09
Tifany
So I'll start with just background information about genetics and biology. So remember, we have about 20,000 different genes. Right? And those genes are responsible for a number of things. Hair and eye color people are most familiar with. But we have genes that help determine if disease will develop. So when there's a mutation in a gene, oftentimes that disease will present in the individual.
In some situations, that individual may carry what is called a mutation in the gene. So they are not symptomatic but can pass those gene mutations on to their children. So an example of that would be cystic fibrosis or sickle cell anemia. So genetic testing is the process by which we are either drawing a blood sample or saliva sample, and we are looking for specific mutations in a gene to help us better understand the basis of an individual's disease, help with management, treatment, and then testing other individuals. So Genetic counselors serve as part of the healthcare team. We are here to help patients navigate that entire process. So we help patients determine, one, is genetic testing necessary. Right? If it is, which test is going to be appropriate for that patient? How are they going to use that information? Are there any limitations to testing? Are there risks associated with that testing? And we're also going to help them deal with the psychosocial analysis there. So genetic testing sometimes can be very difficult to process. It can be hard to hear that not only you have some sort of genetic mutation but you could have potentially passed it on to your offspring as well.
So we provide support through that whole process. We also offer research opportunities when they are available, whether they're in our practice or nationally. So we're really helping patients navigate that entire process.
00;05;12;11 - 00;05;19;13
Cheryl
Can you talk about, specifically, the role of a genetic counselor in an oncology setting? Is there a difference?
00;05;19;19 - 00;06;38;15
Tifany
Yeah. So a genetic counselor in the oncology setting is really spending most of their time focusing on the genetic basis of cancer. Right. So every individual that comes through the doors of Virginia Oncology Associates is my hope that our providers are asking the question, "Should genetic testing be offered to this individual?" And so sometimes genetic testing is helping to make decisions regarding treatment.
Some of our patients who have breast cancer may use genetic testing to decide if a lumpectomy is the best route or if they might consider a bilateral mastectomy. Once a patient has already had cancer, genetic testing can help them determine if there's a high risk for a second primary. So we're part of a team helping those individuals with the cancer diagnosis understand, Hey, is this hereditary? Should I make some different decisions based on the genetic test? And then, you know, after this diagnosis, are there other cancers that I might be at risk for? Right. We also see patients from the community who don't have cancer. So one of the physicians that I work with, he likes to say, "We don't want to just treat the disease. We want to try and prevent or reduce the likelihood of disease whenever possible." So we always welcome those patients from the community who don't have a personal history of cancer, but a family history that might warrant genetic testing.
00;06;38;17 - 00;06;55;22
Cheryl
So let's talk more about that.
Tifany
Okay.
Cheryl
Who then is, I'm trying to think of the right word, but is it eligible? Can people walk in off the street? How do they raise their hand and say, I would like genetic testing? And is it something open to everyone?
00;06;55;25 - 00;07;33;20
Tifany
So anyone interested in genetic testing should certainly start by having a conversation with their health care provider and they want to share their personal history and their family history. And that conversation can really help determine if genetic testing is going to be appropriate. Universal genetic testing, especially for hereditary cancer syndromes, is not something that's routinely available, nor something that we would advocate patients considering. But a conversation about your history and the family history is the first place to start. And then based on that information, we can help determine if genetic testing might be the right choice for you.
00;07;33;25 - 00;07;44;16
Cheryl
And then where does a counselor fit in? Do you speak with the counselor before stepping in to either get a saliva or a blood test or where in that process do you seek the help of a counselor?
00;07;44;17 - 00;08;40;09
Tifany
Absolutely. Once the referral is made for genetic counseling and testing, you'll see the genetic counselor before the test is ordered. Right. So, genetic counselor, we want to make sure that you understand what's involved with this testing process. It's not simply a blood or a saliva sample. There's a lot of information that can be obtained. But then also there can be variants of uncertain significance or results that aren't necessarily clear.
It's possible that a patient could have genetic testing and have a negative result, but that doesn't mean that their cancer risk is eliminated. Right. So we're reviewing all of that information. I like to say the genetic test is a tool. Right. It does not determine the patient's entire risk. So with genetic testing, with their medical history, their family history, we're walking them through that entire process.
So we're right at the beginning before testing is done. And then we like to see those patients once the results are available, to go through those results with them.
00;08;40;12 - 00;08;59;15
Cheryl
Like what you said, it's part of the team. It's someone who can help you during a pretty emotional time helping make decisions going forward.
Tifany
Absolutely.
Cheryl
As part of that team. The focus here clearly is to have genetic counseling and testing go together, go hand in hand. But it's not like that everywhere, is it?
00;08;59;18 - 00;09;44;07
Tifany
No, unfortunately, it is not. Some patients are all for genetic testing without the benefit of genetic counseling. We feel very strongly that genetic counseling is a very important piece of the genetic testing process. And we certainly have patients who come in without genetic counseling prior to testing. A lot of times they may be confused by the information, not fully understanding what it means to them or the impact that it has on their family.
We're still happy to see those patients. So we certainly work with physicians in our community who may have ordered the tests and sent the patients to us on the back end. We feel like there's a benefit, you know, in seeing a genetic counselor at any point throughout the genetic testing process.
00;09;44;09 - 00;09;52;22
Cheryl
As we said earlier, it is a piece of that puzzle, a part of that team to help you at a time that can be pretty difficult.
00;09;52;25 - 00;09;54;08
Tifany
Absolutely.
00;09;54;10 - 00;10;05;04
Cheryl
Let's talk a little bit more about the process, the testing process itself. When someone decides he or she wants to get a genetic test. What happens?
00;10;05;06 - 00;10;50;11
Tifany
So once we've decided on genetic testing, a blood or saliva sample is collected, and that specimen is sent out to a testing laboratory where it takes about 2 to 3 weeks for the results to return. Once the results return, that information is shared with the patient by their genetic counselor or other genetic provider. In doing that result disclosure session, we also identify other individuals in the family who may benefit from genetic counseling and testing.
So we call this whole process cascade testing. Once a gene change or mutation is identified in the family. We really want to make sure that everyone else in the family who is at risk knows that and has the opportunity to consider genetic counseling and testing as well.
00;10;50;14 - 00;11;02;07
Cheryl
Let's talk about the cancer themselves. Is cancer a genetic disease and are there certain cancers that give you better answers or can give patients better answers?
00;11;02;09 - 00;11;34;03
Tifany
So cancer is a genetic disease. Right. It's caused when there is uncontrolled cell growth. Uncontrolled cell growth is caused by mutations or changes in genes. And so the majority of the time these genetic changes or mutations are acquired over an individual's lifetime. One of the most common risk factors is normally our age. The older we get, the higher the risk. Right? So any time there's a cancer diagnosis, there are genetic changes or mutations making it a genetic disease.
00;11;34;06 - 00;11;40;12
Cheryl
Can you explain the difference between sporadic cancers versus hereditary cancers?
00;11;40;14 - 00;13;01;02
Tifany
Absolutely. So remember, I said that cancer is a genetic disease. There are gene changes that occur that allow the cancer to develop. When those genetic changes are acquired over time, we refer to that as sporadic cancer. We think about 90% of all cancers are sporadic. Typically sporadic cancers are diagnosed later in life. We define later, after the age of 50. And paired organs, they're typically unilateral. So someone might have the cancer in just one breast or one kidney. And a lot of times there may be no other family history of that cancer, whereas hereditary cancers mean that you're born with a change in the gene, a genetic mutation that is inherited from your mother or your father, and it's going to be in every cell of the body. Having that genetic mutation again, doesn't mean that you're going to develop disease, but it puts you at much higher risk. So what we typically find with hereditary cancers is, is that they are diagnosed early in life. Right. So we normally expect to see breast cancer as a women ages. To see someone with breast cancer in her twenties would be a concern for hereditary cancer. Same thing with colon cancer. With hereditary cancer, we also see individuals who develop bilateral disease more often, or they may develop more than one primary. And then there is typically a family history of cancer as well.
00;13;01;04 - 00;13;16;23
Cheryl
We all have heard how important family history is when determining your health or the health of your children. And so this is one of these things to be wholly aware of right in the very beginning. What are some symptoms; red flags for hereditary cancer?
00;13;16;29 - 00;14;02;22
Tifany
So red flags for hereditary cancers, are normally, a strong family history. So when you meet with a genetic counselor, we review a three-generation pedigree. So we go back as far as grandparents and go down through children. A red flag would be seeing more than one individual affected with cancer through multiple generations, a diagnosis very early, bilateral disease in paired organs, individuals who have rare cancers like male breast cancer, medullary thyroid cancer. Those would be big red flags. And then we ask about the patient's ethnicity and ancestry because individuals who have Ashkenazi Jewish descent tend to have a higher risk for some of these hereditary cancer syndromes as well. So that can also be considered a red flag.
00;14;02;24 - 00;14;19;26
Cheryl
In our audience, we have health professionals. We have family members. What are they to take from this? If they have someone who has a certain type of cancer in their history going back three generations? What is the message for them to take from this?
00;14;19;29 - 00;15;43;03
Tifany
Right. So for those individuals in the audience who've had cancer themselves, I think is important for them to discuss genetic counseling and testing with their healthcare provider. Do I have a cancer that is often associated with hereditary cancer syndrome? Are there any red flags in my family history? Do you see any way that genetic testing could potentially change my surveillance in the future?
For the health care provider, I would recommend that they screen every individual. A family history is one of the most important tools that we have when it comes to cancer screening. So during those routine visits or examinations, not only are you looking at the information for your patient in front of you, but you're asking him or her about their family, their family history of cancer, and whether or not anyone in the family has ever had genetic testing.
When it comes to genetic testing for hereditary cancer syndromes, we always want to test the individual in the family who's had cancer first. Okay. Once we've identified a genetic mutation, then we will recommend follow-up testing for the relatives. If the individual in the family who had cancer is no longer available for testing, then we want to offer testing to their first-degree relatives before testing more distant relatives.
And our first-degree relatives are our parents, our siblings, and then our offspring.
00;15;43;05 - 00;15;56;11
Cheryl
Can you talk about some of the benefits or the reasons why someone would want to have this knowledge when they have someone with cancer in their family?
00;15;56;14 - 00;15;59;25
Tifany
Right. So I know it's cliche to say it, but knowledge is power.
00;15;59;29 - 00;16;00;26
Cheryl
I was going to say that.
00;16;01;02 - 00;16;47;19
Tifany
We strongly believe that. And with genetic testing information, we believe that patients and their families are able, able to make more informed decisions regarding their treatment and then future surveillance or screening. If we know what someone is most at risk for, then we can target their screening. Right. We're not going to be able to prevent cancer for every individual, but if we can improve the likelihood of early detection, we consider that a win.
Right. If someone is walking around at risk for colon cancer and they don't know it, they may not have a colonoscopy until they turn 45, whereas, with a genetic test, they might benefit from a colonoscopy as early as age 25. That makes a huge difference.
00;16;47;21 - 00;16;51;08
Cheryl
What are some downsides of having this testing done?
00;16;51;11 - 00;17;23;19
Tifany
I think the number one downside is probably just the emotional stress that can go along with knowing that there is this genetic mutation in the family. Sometimes patients are concerned about things like genetic discrimination and losing their health insurance if they have a positive genetic test result. We do have laws in place that help protect us from genetic discrimination as it applies to health insurance.
But we do have some limitations. Those laws do not apply to life insurance, disability, or long-term care. So that can be a downside for some individuals.
00;17;23;20 - 00;18;35;25
Cheryl
It's important to know this ahead of time for you before you go down this path. And people might feel they have all the answers they need already. They maybe bought a kit off of someplace online, one of those direct-to-consumer genetic testing kits. And maybe they feel like they have all the answers that they needed to get. How different is this kind of testing than what you offer here at Virginia Oncology Associates?
00;17;49;28 - 00;18;17;05
Tifany
Right. So the direct to consumer testing is just a broad kind of generic test that can be offered to anyone. Right. So it's directly sold to the consumer. It's not personalized. Right. It's not taking into consideration the entire health history of the individual or their family history. So once those results become available, they may not be very targeted or specific for the individual. So here at Virginia Oncology Associates, we're going to personalize that experience for you. We're taking a look at all of your health history information, your family history, and then we're going to help you decide what is the best test for you. How is this information going to be most impactful for you? And then also, again, your family.
00;18;35;27 - 00;19;06;17
Cheryl
Since you've been at Virginia Oncology Associates, the program has grown from, I guess, from nothing [laughing], to include now two physician champions, two full-time board-certified genetic counselors, and three advanced practice providers. And then I'm reading here that in 2022, more than 1,500 patients were seen for genetic counseling and testing here at Virginia Oncology Associates. What do you think of that?
00;19;06;19 - 00;19;32;27
Tifany
I think it's very impressive, but we need to do more. Right. As many patients that we've seen, there are still a lot of patients in the community who will benefit from this service and have not been informed; you know, that it's available; may not know how to seek out genetic counselors or genetic testing. So while we celebrate, you know, our growth, we still are mindful that there's still a lot of work to do.
00;19;32;29 - 00;19;42;12
Cheryl
What are some of the biggest surprises that you hear from patients who didn't realize you were here and then now realize that you're here?
00;19;42;14 - 00;20;40;20
Tifany
I think that patients, when they come in and they did not realize we were here and maybe had testing without the benefit of genetic counseling before, that they are sometimes a little bit confused, you know, by the process. I have had patients say to me, "Well, my sister, she didn't have to do all of this. She just had the test and she got the result." But after having an opportunity to meet with us they soon realize the importance of the genetic counseling piece. We find that most patients are extremely grateful for the opportunity to sit down with us and go over that information and then to know that they have someone that they can reach out to in the future because things change, right?
Family histories change. Genetic testing can change. So once they made contact with us, we're always available for them to reach back out, receive any new updates, and consider additional genetic testing in the future if necessary.
00;20;40;22 - 00;21;09;26
Cheryl
It's a relationship.
Tifany
It is.
Cheryl
Where can people go if they want more information on this process? I know we have had separate interviews about this before. We've done some YouTube videos and we have an upcoming podcast with Dr. Sonia Hepburn talking about genetic testing as it relates to breast cancer specifically. There's a lot of interest in this. Where can people go for more information if they want more?
00;21;09;26 - 00;21;32;27
Tifany
So if they want to know more about the genetic program that we have here at Virginia Oncology Associates. They can always visit our website. If someone is interested in genetic counseling and they do not live in the area, they can go to the National Society of Genetic Counselors website and they can easily search for a genetic counselor. There could be someone they meet in person, or they can even set up a virtual appointment.
00;21;33;00 - 00;21;39;07
Cheryl
Tifany, thank you so much. You've shared so much wonderful information and we really appreciate your time.
00;21;39;09 - 00;21;43;28
Tifany
Oh, thank you for having me.
00;21;44;01 - 00;22;06;23
That’s all for this episode of Cancer Care Connections. Stay tuned for our next episode where Cheryl will be speaking with Dr. Sonia Hepburn about genetic testing and what it reveals about the possibilities of developing cancer, specifically Breast Cancer.
Don't forget to subscribe to our podcast, via Apple Podcasts, Spotify, or anywhere Podcasts or available, or listen online at cancercareconnections.buzzsprout.com. Cancer Care Connections is the official podcast of Virginia Oncology Associates. For more information, visit us at VirginiaCancer.com or find us on Facebook or Instagram at Virginia Oncology Associates.