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Exploring Genetic Counseling for Hereditary Cancer Syndromes
Most cancers happen by chance, but for some families, there is an inherited risk factor. How do you know if the cancer in your family is associated with an inherited risk, and when should you consider genetic counseling? Kelly Morse, manager and senior genetic counselor for the ProMedica Cancer Institute's Genetics Programs explains how genetic counseling works.
Featured Speaker:
Kelly received her master’s degree in medical genetics from the University of Cincinnati and is board-certified in genetic counseling.
Kelly Morse, MS, LCGC
Kelly Morse is the manager and senior genetic counselor for the ProMedica Cancer Institute’s Genetics Program. As a genetic counselor, she is uniquely trained to help families understand their hereditary predisposition to develop specific cancers. She works closely with their providers to ensure patients receive the best possible follow-up and screening.Kelly received her master’s degree in medical genetics from the University of Cincinnati and is board-certified in genetic counseling.
Transcription:
Exploring Genetic Counseling for Hereditary Cancer Syndromes
Evo Terra (Host): Have you heard of hereditary cancers? Now, if cancer doesn't run in your family, then perhaps not. Providers called genetic counselors help people like you and me understand the risks of hereditary cancer we might face in life.
Welcome to Happily Ever After 40, a podcast brought to you by ProMedica, where we discuss midlife health and wellbeing. In this episode, we'll talk about genetic counseling for hereditary cancer syndromes. I'm your host, Evo Terra. And I'm joined by Kelly Morse, Manager and Senior Genetic Counselor for the ProMedica Cancer Institute's Genetics Program. Kelly, welcome to the show.
Kelly Morse: Thank you for having me.
Host: Well, let's get right into this, Kelly. What is, or perhaps I should say, who are genetic counselors?
Kelly Morse: Sure. Genetic counselors are master's trained healthcare providers, and we have extensive training both in genetics but also counseling. And we can work in many different areas of medicine, but my focus for the past 10 plus years has been oncology and hereditary cancer syndromes.
Host: All right. So next qualifying question, tell us more about these hereditary cancer syndromes.
Kelly Morse: So, most cancers are randomly developing and they happen by chance. However, for some families there is an inherited risk factor, meaning in the same way that things like hair color, eye color, physical characteristics can run in families. Some families can have a genetic change or a mutation that's passed through the generations, and this can make their body more susceptible to developing specific types of cancers. These risks are determined by a genetic mutation, which is passed through the family. And we find these genetic mutations via genetic testing, which is usually done on a blood or sometimes a saliva sample.
Host: Great information. I'm fortunate in the fact that we don't have much cancer in my family. But I am curious, how often is a cancer risk due to these inherited risk factors?
Kelly Morse: It's estimated that about 5-10% of all cancers are due to an inherited risk factor. So, the vast majority are sporadic, randomly occurring, happening by chance, but that 5-10% can encompass many different types of cancers. Specific cancers can have a higher association with an inherited risk. For example, it's estimated up to about 20-24% of those diagnosed with ovarian cancer ultimately will have an underlying inherited or hereditary risk factor, compare that to about 10% of breast cancers, 5-10% of colon cancers. So really, the initial type of cancer drives how statistically likely it might be due to an inherited risk.
Host: Right. Got it. I'm not so sure that it's good news that the majority of cancers are random. But nonetheless, that's the world we live in today, I suppose. So, who out there should be considering genetic testing for these hereditary cancer syndromes? Just people for whom cancer runs in the family or for the rest of us too?
Kelly Morse: That's a great question. So, there are many different situations where a patient may be a good candidate for genetic counseling. And I'll just run through a few of the more common. Right now, it is recommended that any person diagnosed with ovarian, pancreatic or metastatic prostate cancers should be offered a referral for genetic counseling and, potentially, testing.
Additionally, the American Society of Breast Surgeons does suggest that any woman with a breast cancer be offered a genetics visit as well. For some other cancers like colon cancer and endometrial cancer, which is cancer in a woman's uterus, we're really looking at most often seen individuals diagnosed prior to age 50. However, there are some recent suggestions coming out that any individual diagnosed with colon cancer should also be offered genetics. Other types of cancers like kidney cancers, we may want to see those individuals if they're diagnosed prior to age 46. We also see some of the more unusual or uncommon types of cancers, such as a very specific thyroid cancer called medullary thyroid cancer or rare tumors like a pheochromocytoma or a paraganglioma. Whenever one of those occur in a person or a family, that should be a red flag, if you will.
Ideally, it's always best to test someone in the family first who is going through that cancer diagnosis or personally has had that diagnosis in the past. But unfortunately, with cancer being what it is, we know that those family members are not always able to be tested. And in those situations, we can certainly offer testing to any interested family member as well.
Host: So, it sounds like the highlight here is we're looking specifically for people who have cancer currently, and the question is, is this something that the rest of the family should be concerned about? Do I have that right?
Kelly Morse: Absolutely. And that's a really great followup question. So, it really is helpful right now in two different directions. So, one is it may help that patient who is currently undergoing treatment, it may give them and their providers additional options for therapeutic options or clinical trials or decision-makings regarding their treatment. But then, it can also be informative for family members who don't currently have a diagnosis to say, "Am I also at this increased risk? What should I be doing differently to prevent, catch early, reduce my likelihood of getting that cancer?"
Host: Right. Well, let's go through the process. What happens during one of these genetic counseling visits?
Kelly Morse: So the genetic counselor is going to review that individual's personal medical information, their family history. And they're going to try and determine if it's concerning for a hereditary cancer syndrome. If that person is currently going through treatment, we're going to ask questions how they're doing with their treatment, where they're at in their treatment.
And for that family history, we're going to be looking to see if there are multiple generations, so multiple levels of that family tree impacted by the same or related types of cancers. Then, we will educate the patient about hereditary cancer syndromes, educate them about genetic testing, help them understand the so what, if you will, and have a conversation a lot like we're having right here, making sure to address patient's concerns.
If someone chooses to move ahead with genetic testing, as I mentioned earlier, it's usually a blood draw, and we can do that right after their visit with a genetic counselor. Typically, results take about two to four weeks. But sometimes we can get certain results back sooner for those who might be making a surgery decision, and we share those results with the patient over the phone, bringing them back in person if they need to have additional conversations.
Host: Good. So, it sounds like a straightforward process. Let's think about this. I guess as we're wrapping up here, a little broader, or I'm thinking about how these syndromes are actually passed on down to families. I understand how genetics works, but maybe a little bit of an understanding more of what's happening at a genetic level might be helpful.
Kelly Morse: Absolutely. And this is one of the most common questions that we get. So, people come to see us. Of course, they're concerned about themselves. But the very next question, if not, the first question is, "What does this mean for my siblings? What does this mean for my children? " For most of these genetic conditions, they're what we call autosomal dominant, and that means if a person tests positive for a genetic mutation, their full siblings and biological children will have a 50% or a one in two chance that they also could have inherited this mutation.
So, the ideal is that if a person were to test positive, they would share that information with their biological family and adult family members, then would ideally seek out a genetic counselor for themselves, have that education, that visit, and decide if genetic testing is right for them. Usually, we do not test minor children. So, most of these genetic conditions, it's not going to change the way we treat a five-year-old or a 12-year-old. Usually, these are things where we see people in their early 20s because that's when medical management might change for those currently unaffected family members.
Less commonly, some of these genetic conditions are autosomal recessive, and that means that the genetic mutation has to come from both mom and dad before a child would have the increased risk. These are the minority, however. And so whenever a person has a positive genetic test, during that genetic counseling followup call, we absolutely would make sure that that person, that family understands how their specific mutation is passed on in families as well as the right age to offer testing to other family members.
Host: Well, this has been a fascinating deep dive, Kelly. Is there anything else we should talk about before we depart?
Kelly Morse: I think we've had a really great conversation. I think the point that maybe I would leave people with is a lot of times people come to see us on the fence, meaning that they're interested maybe, they want to learn more about genetic testing. They want to see if it's something that is right for them. They may have concerns regarding cost and things like that with their insurance. Ideally, genetic counselors are the best people to answer those questions, so have that initial visit with a genetic counselor, so that we can give you all the correct information, perhaps correct some of those misconceptions, and then that patient can make an educated choice of what's best for them and their family.
Host: Great, Kelly. Thanks again for being with us today.
Kelly Morse: Absolutely. Thanks for having me.
Host: Once again, that was Kelly Morse, Manager and Senior Genetic Counselor for the ProMedica Cancer Institute's Genetics Program. For more information, please visit promedica.org. Again, that's P-R-O-M-E-D-I-C-A.org. If you found this podcast episode helpful, please do share it on your social media. I'm Evo Terra. Until next time, stay happily ever after 40.
Exploring Genetic Counseling for Hereditary Cancer Syndromes
Evo Terra (Host): Have you heard of hereditary cancers? Now, if cancer doesn't run in your family, then perhaps not. Providers called genetic counselors help people like you and me understand the risks of hereditary cancer we might face in life.
Welcome to Happily Ever After 40, a podcast brought to you by ProMedica, where we discuss midlife health and wellbeing. In this episode, we'll talk about genetic counseling for hereditary cancer syndromes. I'm your host, Evo Terra. And I'm joined by Kelly Morse, Manager and Senior Genetic Counselor for the ProMedica Cancer Institute's Genetics Program. Kelly, welcome to the show.
Kelly Morse: Thank you for having me.
Host: Well, let's get right into this, Kelly. What is, or perhaps I should say, who are genetic counselors?
Kelly Morse: Sure. Genetic counselors are master's trained healthcare providers, and we have extensive training both in genetics but also counseling. And we can work in many different areas of medicine, but my focus for the past 10 plus years has been oncology and hereditary cancer syndromes.
Host: All right. So next qualifying question, tell us more about these hereditary cancer syndromes.
Kelly Morse: So, most cancers are randomly developing and they happen by chance. However, for some families there is an inherited risk factor, meaning in the same way that things like hair color, eye color, physical characteristics can run in families. Some families can have a genetic change or a mutation that's passed through the generations, and this can make their body more susceptible to developing specific types of cancers. These risks are determined by a genetic mutation, which is passed through the family. And we find these genetic mutations via genetic testing, which is usually done on a blood or sometimes a saliva sample.
Host: Great information. I'm fortunate in the fact that we don't have much cancer in my family. But I am curious, how often is a cancer risk due to these inherited risk factors?
Kelly Morse: It's estimated that about 5-10% of all cancers are due to an inherited risk factor. So, the vast majority are sporadic, randomly occurring, happening by chance, but that 5-10% can encompass many different types of cancers. Specific cancers can have a higher association with an inherited risk. For example, it's estimated up to about 20-24% of those diagnosed with ovarian cancer ultimately will have an underlying inherited or hereditary risk factor, compare that to about 10% of breast cancers, 5-10% of colon cancers. So really, the initial type of cancer drives how statistically likely it might be due to an inherited risk.
Host: Right. Got it. I'm not so sure that it's good news that the majority of cancers are random. But nonetheless, that's the world we live in today, I suppose. So, who out there should be considering genetic testing for these hereditary cancer syndromes? Just people for whom cancer runs in the family or for the rest of us too?
Kelly Morse: That's a great question. So, there are many different situations where a patient may be a good candidate for genetic counseling. And I'll just run through a few of the more common. Right now, it is recommended that any person diagnosed with ovarian, pancreatic or metastatic prostate cancers should be offered a referral for genetic counseling and, potentially, testing.
Additionally, the American Society of Breast Surgeons does suggest that any woman with a breast cancer be offered a genetics visit as well. For some other cancers like colon cancer and endometrial cancer, which is cancer in a woman's uterus, we're really looking at most often seen individuals diagnosed prior to age 50. However, there are some recent suggestions coming out that any individual diagnosed with colon cancer should also be offered genetics. Other types of cancers like kidney cancers, we may want to see those individuals if they're diagnosed prior to age 46. We also see some of the more unusual or uncommon types of cancers, such as a very specific thyroid cancer called medullary thyroid cancer or rare tumors like a pheochromocytoma or a paraganglioma. Whenever one of those occur in a person or a family, that should be a red flag, if you will.
Ideally, it's always best to test someone in the family first who is going through that cancer diagnosis or personally has had that diagnosis in the past. But unfortunately, with cancer being what it is, we know that those family members are not always able to be tested. And in those situations, we can certainly offer testing to any interested family member as well.
Host: So, it sounds like the highlight here is we're looking specifically for people who have cancer currently, and the question is, is this something that the rest of the family should be concerned about? Do I have that right?
Kelly Morse: Absolutely. And that's a really great followup question. So, it really is helpful right now in two different directions. So, one is it may help that patient who is currently undergoing treatment, it may give them and their providers additional options for therapeutic options or clinical trials or decision-makings regarding their treatment. But then, it can also be informative for family members who don't currently have a diagnosis to say, "Am I also at this increased risk? What should I be doing differently to prevent, catch early, reduce my likelihood of getting that cancer?"
Host: Right. Well, let's go through the process. What happens during one of these genetic counseling visits?
Kelly Morse: So the genetic counselor is going to review that individual's personal medical information, their family history. And they're going to try and determine if it's concerning for a hereditary cancer syndrome. If that person is currently going through treatment, we're going to ask questions how they're doing with their treatment, where they're at in their treatment.
And for that family history, we're going to be looking to see if there are multiple generations, so multiple levels of that family tree impacted by the same or related types of cancers. Then, we will educate the patient about hereditary cancer syndromes, educate them about genetic testing, help them understand the so what, if you will, and have a conversation a lot like we're having right here, making sure to address patient's concerns.
If someone chooses to move ahead with genetic testing, as I mentioned earlier, it's usually a blood draw, and we can do that right after their visit with a genetic counselor. Typically, results take about two to four weeks. But sometimes we can get certain results back sooner for those who might be making a surgery decision, and we share those results with the patient over the phone, bringing them back in person if they need to have additional conversations.
Host: Good. So, it sounds like a straightforward process. Let's think about this. I guess as we're wrapping up here, a little broader, or I'm thinking about how these syndromes are actually passed on down to families. I understand how genetics works, but maybe a little bit of an understanding more of what's happening at a genetic level might be helpful.
Kelly Morse: Absolutely. And this is one of the most common questions that we get. So, people come to see us. Of course, they're concerned about themselves. But the very next question, if not, the first question is, "What does this mean for my siblings? What does this mean for my children? " For most of these genetic conditions, they're what we call autosomal dominant, and that means if a person tests positive for a genetic mutation, their full siblings and biological children will have a 50% or a one in two chance that they also could have inherited this mutation.
So, the ideal is that if a person were to test positive, they would share that information with their biological family and adult family members, then would ideally seek out a genetic counselor for themselves, have that education, that visit, and decide if genetic testing is right for them. Usually, we do not test minor children. So, most of these genetic conditions, it's not going to change the way we treat a five-year-old or a 12-year-old. Usually, these are things where we see people in their early 20s because that's when medical management might change for those currently unaffected family members.
Less commonly, some of these genetic conditions are autosomal recessive, and that means that the genetic mutation has to come from both mom and dad before a child would have the increased risk. These are the minority, however. And so whenever a person has a positive genetic test, during that genetic counseling followup call, we absolutely would make sure that that person, that family understands how their specific mutation is passed on in families as well as the right age to offer testing to other family members.
Host: Well, this has been a fascinating deep dive, Kelly. Is there anything else we should talk about before we depart?
Kelly Morse: I think we've had a really great conversation. I think the point that maybe I would leave people with is a lot of times people come to see us on the fence, meaning that they're interested maybe, they want to learn more about genetic testing. They want to see if it's something that is right for them. They may have concerns regarding cost and things like that with their insurance. Ideally, genetic counselors are the best people to answer those questions, so have that initial visit with a genetic counselor, so that we can give you all the correct information, perhaps correct some of those misconceptions, and then that patient can make an educated choice of what's best for them and their family.
Host: Great, Kelly. Thanks again for being with us today.
Kelly Morse: Absolutely. Thanks for having me.
Host: Once again, that was Kelly Morse, Manager and Senior Genetic Counselor for the ProMedica Cancer Institute's Genetics Program. For more information, please visit promedica.org. Again, that's P-R-O-M-E-D-I-C-A.org. If you found this podcast episode helpful, please do share it on your social media. I'm Evo Terra. Until next time, stay happily ever after 40.