(Links mentioned in the episode are located at the bottom of the page)
SARA
Welcome to today's episode of the Positive Gene Podcast. We're gonna dig into the world of genetics and the impact on your health. I'm your host, Sara Kavanaugh and today I'm honored to be with our first guest Morgan Wolfgang. Morgan is a genetic counselor specializing in hereditary cancer.
Welcome Morgan!
MORGAN
Thank you, happy to be here today.
SARA
Morgan is a Vanderbilt grad with a master's in genetic counseling and is not just a professional in her field. She is an advocate for accessible genetic services as well. She's currently with Ascension in Nashville. Morgan's journey includes an eye opening stint at the St. Thomas Cancer Center, focusing on oncology genetic counseling. She is a certified expert by the American Board of Genetic Counseling and she’s right at the heart of it, especially with me and helping me understand my own genetic make up, where she revealed my conditions which are Lynch Syndrome and CHEK2.
Again, Morgan isn’t just about the science, her work in disability studies and her passion for hereditary cancer prevention really shows her commitment to making a difference and her willingness to meet with me on the podcast also further conveys that so again, we appreciate you being here.
Today, we're going to dig in - genetics, the importance of genetic understanding, and exploring how it can shape our health care choices. And if you've listened to my podcast up to this point, you know that my genetic understanding or my genetic predisposition made a huge difference in some of the health care choices that I made over the last year.
Let’s kick this off with a little bit of background about you. For our listeners that might be new to the world of genetics, can you briefly describe what a geneticist does and maybe tap into your personal journey into the field.
MORGAN
So I work as a genetic counselor in a cancer center, but there are genetic counselors that work in all different specialties of medicine. So when we go to school, our graduate school to become a genetic counselor, we are trained in all different specialties like pediatrics, rare disease, cancer, prenatal, preconception, cardiology, and a bunch of others. So I chose to specialize after graduation and work in a cancer center.
As a genetic counselor, like you mentioned, we have a master's degree and I went to the Vanderbilt School of Medicine for mine, but there are many other programs across the country. They're all amazing programs. And I specifically work in a cancer center where I see patients with and without cancer. And I meet with families. So it's usually a family affair. I start with one patient and then we branch out through the family tree and I really like to focus on, of course the complex science and the complex genetic information. I really like to make that accessible for people so simplifying that language, plain language that they can use to make informed decisions and have discussions.
But the genetic “counselor”, so the counselor aspect of that is we have a lot of training throughout our graduate program that really focuses on what we call psychosocial or emotional needs. So the counseling aspect in addition to the genetics, I'm really passionate about both and I like to lean into both in my appointments with my patients and families.
SARA
I like how you differentiated the genetic and the counseling piece. It isn't just the science behind it, which can be challenging enough to really understand the science behind it explaining what Lynch syndrome means, and the different mutations and the different relationships to all of those things. But you're right, the counseling piece is really important. I think when I had my conversation with you, it was a “you might need to sit down for this…” kind of conversation and you led me through. You assured me that this is going to be okay. Here are the things you can do. And I immediately knew that ok, there is a plan, there’s some researcher that says I do or do not have to do these particular invasive surgeries along the way and I think that made a huge difference.
Understanding the risk level - so immediately when you have a hereditary risk, it means you’re going to get cancer. We’ll have some time we'll talk about that in a little bit more detail in terms of what that risk means and going from my personal experience you assured me - that it's not always the case. I think you understood that I'm one of those who's going to not only just have a lot of questions but maybe want to dig a little bit deeper and making that assessment with your patients like, how far do they want to go with us in this conversation? I felt like you did a great job with that and I think that you know really is a testament to the counseling aspect.
MORGAN
And every patient has their own way of coping and processing information. Talking about cancer in general stirs up a lot of emotions, especially if someone has recently watched a loved one battle cancer. So I think that is something that's really special about genetic counselors is we build out time in our appointments or in our phone calls to really check in with people and check in how they're processing, where they are emotionally. Because I can make predictions about how someone might react or how they might process information, but every single patient is unique so we try really hard to treat every patient with respect and really tailor our information to what they need most in that moment.
SARA
And the follow up with the written documentation that you went through with us was really important. It was provided with a level of detail on my questionnaire at the beginning of our process which we’ll talk about that shortly in terms of what people can expect. And then the follow up email which kinda break everything down and I think that is really important too.
What I am curious about is process. When a doctor makes a referral what happens next? Can you take us through that process and what people should expect when they get a referral to a genetic counselor?
MORGAN
Sure. So every clinic does it differently but I can speak about what we do in our clinic. So in our clinic we get a referral form a primary care doctor, a breast specialist or a gyncecologist. So we get a referral, we call the schedule the patient. In our clinic we offer two types of appts - we can do a virtual video chat appt (telemedicine) or in person at our physical location. Either way, we’re going to see the patient, we are going to take a lot of time learning about them, their needs. We’re gonna help them make the decision for themselves. So as a genetic counselor, I am never going to tell someone they have to have testing. I am going to give them the information that they need to decide if and whey they’re reading to do testing. So in that pretest counseling is where we sit down and I get more information about their personal medical history, their family history. I ask questions about other relatives genetic results, so if you do have an appt with a genetic counselor, ask your relatives for a copy of their results if you can. It goes a long way.
But we also discuss things in that pretest counseling like cost and insurance coverage, we discuss the GINA so do they need to get life insurance, disability, long term care insurance before genetic testing or do they already have policy in place. So we can walk through what that law means for you.
In pretest counseling we will look through the family and tell you if your family history is suspicious or not, so having an appt with us doesn’t guarantee that you need genetic counseling, it’s more of a risk assessment. And so we will walk you through how genetic testing might or might not change your health care going forward. So those are just some examples of things we might talk about. But that pretest counseling is really gonna help that patient decide if they want to do genetic testing.
If so, we can get it ordered. We can do a blood sample or a saliva sample. It gets sent to the lab. Results take about 3 to 4 or sometimes 5 weeks to come back so there is a waiting period. And then my patient will meet with me again, so we can do a phone call for results or we can do a telemedicine or virtual visit for results.
I really walk the patients through, "where do we do from here"? So if they do have a genetic mutation, as a genetic counselor I’ll walk them through the risks, the types of cancer risk, the severity of risk. If the patience wants some of those numbers, if they really love the data, I’ll go into that and if not, I don’t like to overwhelm them with everything all in one appointment so I can always send them the information they can review on their own time. But we use that post-test appoint to make a plan going forward for the patient and also cover what it means for their relatives. So how are they going to talk to their family members? And which family members are at risk? Which family members might benefit from a genetic counseling appt or genetic testing?
The whole idea of genetic testing is to make informed healthcare decisions going forward...then what steps I need to take as a patient to take care of myself.
The whole idea of genetic testing is to make informed healthcare decisions going forward so we really have conversation about what are the steps I need to take as a patient to take care of myself and how do I prioritize those things? At what age do I need to do what screening? At what age do I need to do what surgery? And then I send the patient off to connect with their primary care doctor, other specialists. I am also a resource then for the relatives of that patient. I am a resource for that specialist or the primary care provider that might need to do a little more research and brush up on their genetic knowledge. I am a resource for the entire community. So a genetic counselor I am really accessible to anyone who might have questions.
SARA
Appreciate you taking us through that process. I thinks some people might be intimidated by conversations, blood tests, saliva tests, it’s a lot to unpack. I think getting a little more clarity on what that looks like for patients and the expectations is a really big help.
Now we’ve learned that while many people have a history of cancer in their family, only 5-10% is hereditary and there’s often some confusion then around that genetic predisposition versus the inevitable destiny. So we’ve touched on this a little bit but maybe you can shed a little light on having a certain gene mutation doesn’t necessarily guarantee that one will develop the associated condition.
MORGAN
So there are very few mutations where it's a guarantee that you'll get cancer. So most genetic mutations are not a guarantee that you'll get cancer, it's just a risk factor for cancer. And every single mutation is unique. So it's hard to speak in general terms because some mutations are low risk, some are moderate risk, and some are high risk. Some have risk for one, maybe two types of cancers, and some have risk for a handful of cancers, as I'm sure you're aware, from your own personal experiences. And so, part of my job as a genetic counselor is to walk people through those risks, because it's not a guarantee, but everyone interprets risk in their own way. So if I say someone has a 10% risk for this specific type of cancer, one patient might think that's a low risk, lower than they were expecting, and some people might think that's one out of 10, that's a really high risk, that's higher than I was expecting.
And so I like to walk through my discussions with patients in a way that I'm presenting statistics and data in multiple ways that they connect with, that they understand.
And when we're thinking about genetic mutations, you get half of your genetic material from mom and half of your genetic material from dad.
So in most cases, if you have one mutation, like is the case for CHEK2 or for Lynch syndrome, having one mutation, you still have a second fully functioning copy of that gene that is working to protect you from cancer. And so cancer can grow if that second copy, the protective copy that is not mutated is damaged somehow throughout your lifetime.
But everything that you can do to keep yourself healthy goes a really long way in reducing a risk for cancer. So all of the things that people have probably told you forever like wearing sunscreen, avoiding smoking, they actually do contribute to cancer risk in a way that even people with a genetic predisposition should be taking care of their health, taking charge of those really controllable actions to lower their risks.
SARA
That was a fantastic explanation. OK, so now we're going to switch to talking about those various genetic tests that are available, the generic genetic tests that are available on the market. What should people consider when they're deciding what tests to take and sort of what that process would look like?
MORGAN
So there are many different genetic labs that are available that do testing for patients. And I would say that a patient who is interested in choosing the right test for them should really be consulting with a healthcare provider. So I'm biased, but a genetic counselor is a really great provider to start with. A genetic counselor probably has one or two favorite labs that they order from all the time. They vetted those labs, they're reputable, they have really great billing policies. And a genetic counselor can help the patient choose the right tests for them. So as a genetic counselor, we are not going to demand that a patient do testing. We're not going to tell them they have to do this specific test. Usually there are options. So patients who are a little bit more anxious and want to start out with a smaller test that's a little bit more targeted, that's an option.
Patients who want bigger tests searching for all different types of risk factors related to multiple cancers, cancers maybe that we're not even seeing in their family, that testing is also available. And so a genetic counselor or another healthcare provider that has specialized training in genetics is a really good resource. You should go to them, talk to them about what your options are, consider cost, consider life insurance. I know you mentioned that in a previous episode, the Genetic Information Non-Discrimination Act (GINA). So there are a lot of factors that go into choosing a genetic test and choosing when and if is the right time to test. So that is not something that a patient should be making the decision about on their own. I will also mention that there are direct to consumer tests like 23andMe. They offer health screening and ancestry testing. So that is completely different than clinical grade genetic testing.
So a high-risk result on a 23andMe test, for instance, if someone has a BRCA mutation that's identified, it is not a for sure thing until it is confirmed with clinical grade genetic testing with a healthcare provider through a certified lab.
So 23andMe is a really great way to get people excited about genetics, to teach people about genetics, to get them asking these questions about cancer risk and cancer screening. But that is not the best option for someone who is interested in testing. They really need to go to their healthcare provider to choose a clinical test.
SARA
That’s so true. I had done 23andMe years ago but more for the ancestry thing and nothing popped up for me then. It wasn’t until I went to my breast specialist …little did I know what it lead me to but its turned, you know, into a blessing in disguise.
Now you mentioned the access, you know that can be challenge for some when it comes to affording testing. I had to pay out of pocket, my insurance didn't cover it, but I do have access to private health insurance for like my screenings and preventative care. And that's certainly a blessing, that does provide some relief. But for those that are listening, and if you're struggling with any costs associated with testing or affordable screenings, there are places like the Medicare Right Center, the Patient Advocate Foundation. And if you want to go to FORCE's website at facingourrisk.org, they do have other resources available as well.
One of the things I found in this process is the empowerment piece and taking some ownership of that process. For me, it was taking that report I received from you and scheduling time with my primary. I emailed it to her and got a call the following day from her nurse and said she needs a little more time, because she is not familiar with Lynch Syndrome or CHEK2. And she asked for another week so she could do a little bit more research on her end. And it took a conversation with her, one or two referrals that she helped me with. And then I really was on my own. In some cases, you know, I feel like, you know, you're the catalyst, as my genetics, but I am really the person responsible for finding those resources, leveraging your primary where you can can, but I had to find a gynecological oncologist. I already had a gastroenterologist and dermatologist, but I needed to find other resources and leveraging her, doing research on a couple of support groups I am a part of, through FORCE’s chat room where you can share information on your predisposition. And so that ownership of your healthcare really went a long way. I had great baseline with the genetic information from you guys but there wasn’t this full reliance on the healthcare system to get me through this process, I really had to do it on my own.
Throughout my podcast I emphasize the importance of education and engagement with your healthcare providers so what are some resources you can recommend or strategies to stay up to date. So maybe what are some other strategics or resources you can recommend?
MORGAN
For people who would benefit from meeting with a genetic counselor, maybe their primary care doctor that doesn’t have one they regularly refer to, there is a website that they can go to type in their zip code, type in the cancer specialty, or whatever other specialty and type in if they prefer a virtual appointment like a video chat or an in person appointment. And that website is: findageneticcounselor.org.
Kind of a mouthful but it is a really easy site to use that patients can go to to find a genetic counselor in their area. People who maybe don’t have access can do virtual visits, there’s a lot of really good resources on there.
I also highly recommend what we call ICARE - it’s an Inherited Cancer Registry. The website is inheritedcancer.net but this is for both patients and providers. It is free to participate so patients who have a genetic mutation that increases their risk for cancer can submit their information and this registry is essentially a database that researches can use to contact patients and they also send regular email updates to patients in very simplified language that says, there’s a new research study that was published that might be relevant to you or here’s a new opportunity to participate in a new study or here is a webinar or a conference that you might think is relevant. So that’s a really good resource that patients can go to.
I also direct patients to their primary care providers, they’re really great resource, as you said. The doctors might need to take a little extra time to do research but I also recommend that doctors can reach out directly to the genetic counselors, so calling, or emailing, or faxing, the provider communication is really important. Because, you’re right, it is a lot of pressure on someone who maybe has no knowledge in the medical field and is really trying to learn a new language essentially, let alone all of the stress and emotional wear and tear that happens when you're talking about cancer and cancer risk. So I’d say a genetic counselor can really provide personalized information and personalized resources because there are so many types of genetic mutations. There are specific support groups for certain mutations. There are also resources to help people talk to their children about risks, so there are kids books about genetic risk if its relevant.
There are so many resources out there that patients probably have never even heard of and a genetic counselor is a really good place to start if they’re interested in personalized resources.
SARA
That’s great. In fact, I wrote a couple down and couple I have access to as well. We’ll put these in the show notes and podcast blog for easy access.
We’re going to shift gears just a little bit as we get close to wrapping up. I want to talk about preventative measures. Having a deeper understanding of our genetic make up is something we need to do and maybe crafting some kind of personalized preventative strategy. Again, we’ve talked a little bit about the prophylactic or preventative surgeries, certainly that’s something that can be done. If you want to compound on that and other additional preventive strategies that you could recommend or that you give to your patients when you do your counseling.
MORGAN
Lifestyle changes are a really big preventative measure or risk-reducing measure that patients can take, whether your not they a genetic mutation, its important for everyone to either quit smoking or decrease their smoking. So even the slightest decrease if you just cut the number of cigarettes you smoke in a day down a little bit, and then the next week decrease, and then the next week. Anything you can do to quit smoking. Smoking is really harmful to your health, not just cancer risk but other risks. So that’s usually the first thing that I touch on if someone is a current smoker.
The second thing is sometimes there are actually guidelines for diet changes that can decrease your cancer risk. So not all diet changes are going to have a huge impact on your cancer risk but every little thing you can do does help. I recommend that people can consult the NCCN (National Comprehensive Cancer Network) guidelines. There are notes on specific foods you can eat more to help reduce your risk, especially in Lynch Syndrome cases. For instance, eating more of what’s called “resistant starch” can help (source here) and of course, regular exercise, eating healthy, eating a diet that is full of fiber and fruits and veggies, a lot of diversity in your diet can go a long way.
So, lifestyles changes , of course, are relevant for everyone who is thinking about reducing their cancer risk.
The second thing, like you mentioned, is preventative measures or screening measures. So changing your health care going forward to take care of yourself, if you know about that risk. High-risk screening can include breast screening above what is the average recommendation, so all women should have annual mammograms starting at the age of 40. But if we know someone has a hereditary risk for breast cancer, if its a high enough risk, we might start that screening earlier. We might add in a second type of breast imaging called a breast MRI in addition to mammogram. So that’s just one example of how screening can happen more often, can happen earlier in life, could look completely different if we know about that risk. The whole idea of screening is to keep an eye on things and if anything is developing they can remove it right then and there. The whole idea is to catch things precancerous or really early cancer stages because then the prognosis is much better if they do have to go through surgery and treatment later on.
Colonoscopy is, as I’m sure you’re familiar with, are another example of screening where we can remove those precancerous polyps before they ever get a chance to turn into cancer. There are also some risk reducing medications that women and men both can have access to, if they qualify, if their doctors clear them and they have specific genetic mutation that warrants that.
And then, of course, there are prophylactic surgeries that we sometimes offer. Now not everyone needs preventative surgery. We don’t send all of these women for preventative mastectomies just because they have an increased risk. So specifically, mastectomy is one of those things where we have a really personalized conversation and we find out what the patients needs are, what their priorities are, if and when they’re ever interested we can send them to a specialist who sits down with them, meets them where they are, and really personalizes that timeline if they do have surgery.
But a lot of the conversations I have are about screening versus surgery. So a lot of women who have risk factors for breast cancer, the gold standard, the recommendation, is actually screening - screening every six months. Surgery is just an option. So I always refer to the guidelines, like I mentioned, the NCCN guidelines. I tell the patients what the guidelines say, what the recommendations are, and then we can have a more personalized conversation about what the best strategy is for them going forward, based on their life, who might be depending on them at home, other factors like that.
SARA
Yeah, that’s key, right, in having a major surgery and having children or parents or somebody you’re taking care of and having to go through that process, there may be some long term implications. I mean, for myself, having gone through hysterectomy with my ovaries and fallopian tubes, there’s a whole lifestyle impact to going into surgical menopause. So there are a lot of things to consider, even just in this brief conversation you’ve already given our listeners so many things to consider when they’re going through this process.
Ok, lastly, let’s talk about the emotional journey that comes with finding out that you have a positive result for a genetic mutation. What advice would you give to individuals who may feel overwhelmed with their results?
MORGAN
First and foremost, the overwhelming feeling that you and others have probably experienced when thinking about their mutation and cancer risk, the first thing that comes to mind is people need to be able to name the emotions that they're feeling. So overwhelmed is a really big term, but oftentimes there are a lot of other emotions that contribute to that overwhelming feeling. So people could be fearful, people could be sad, people could be feeling guilty. There are a lot of emotions that go into overwhelmed. So naming emotions and talking through those concerns talking through those fears with a loved one with a professional counselor, with a medical professional with someone on the support group online or in person. Any of those things that can help someone process the overwhelming feeling is a really good place to start.
I know that is easier said than done, but the emotional support and helping people cope with that risk and that overwhelming feeling is a really big feat. And so I tell patients to just sit there and really name what they're feeling. And most times they've never thought about the fact that they're feeling multiple emotions at once.
I also sit with my patients and help them name, if they don't have the words to name it, they're telling me all of these feelings that they might be having in these concerns and fears. Having a genetic counselor or a mental health professional or a loved one repeat back to you what you said in a more condensed, summarized way is sometimes a really good way to reflect on what you've said if you've just vented for 10 minutes and they can really repeat what you're feeling back to you in one sentence. It doesn't belittle what you're feeling. It doesn't negate those feelings, but it can help you process what's going on and really simplify all of that overwhelming feeling.
I also say that choosing one thing to tackle at a time is sometimes helpful for some people. Some people benefit by identifying what is the most concerning thing to them right now.
Of course, they have all of these concerns and they have a huge list of things that they need to be doing. But if they can figure out what is the most concerning, whether that's worrying about getting their kids tested or whether that's worrying about a preventative surgery or how they're going to pay for their healthcare bills or you know there is one concern that is the biggest concern, start there and really tap into the resources and the people that can help you with that one problem. And you can cross that off the list. You can really process that problem and find a solution if there is one. Sometimes there's not, but sometimes there are resources to help you. And so really narrowing down what is the biggest concern right now can be a really good place to start.
And of course, asking for support from loved ones. So this is something that some people have to practice. So I sometimes tell my patients, practice asking for help. It’s not easy. Some of us grew up never asking for help and so that's why I use the word practice because you're not going to be perfect. The first time you ask for help you might use the wrong words, you might be overly emotional, you might not be clear enough when you're asking for help, you might not know what to ask for but just practice leaning on those who want to support you and the loved ones around you. Asking for help is a really good place to start as well.
SARA
Ok, so is there anything else you’d like to share with podcast listeners or anything that we may have missed that may be of benefit?
MORGAN
I think we covered a lot. I would just say that I'm really excited that people are excited about genetics. I am in this field and working in the cancer center because I love helping families. I love being a genetic counselor, the genetics and the counseling. And so we, as a profession, as the genetic counselor profession, are always open to talking to young people who are interested in joining our field. So if there's anybody who is interested in going to school or going back to school to become a genetic counselor, they can also use that find to look up genetic counselors in their area who might be willing to answer questions or allow them to shadow potentially in their clinic. The field of genetic counseling is not new. We've been around for a really long time. But we are definitely gaining momentum and becoming more standard of care. And so if anybody is interested in becoming a genetic counselor, I would highly encourage them to reach out to someone in their area.
SARA
We had more than one time a genetic counselor on some of the FORCE support group calls and you know, I get so much out of that because you feel like, wow, all these questions are going through my mind and you’re sitting in this virtual room with all these people with the same questions. It is so empowering to know I am not the only one that is facing these questions or just concerned about something in particular. And you have this amazing, educated resource that can provide the information you need in a safe space.
So as we wrap up our insightful episode, just a heartfelt thank you to Morgan. I really appreciate you being here. Your invaluable contribution, your expertise has been amazing today. It's clear that understanding our genetic make-up significantly influences these health decisions that we need to make.
If you are considering genetic testing, we can visit the findageneticcounselor.org. I will have the show notes; you can visit our podcast blog at sarakavanagh.com/podcast.com. And if you are working through the podcast episodes and want to dig in a little bit deeper, I encourage you to listen to a further episode of episode #8, which is “A Candid Guide to Genetic Testing Choices, Four Key Considerations” and a number of those items we actually discussed on our call today.
So, we really appreciate you and appreciate the work you’re doing and we’d love to have you on the show again! Thank you so much!
MORGAN
Thanks for having me.
Links referenced in this episode:
Sara’s website: www.sarakavanaugh.com
FORCE - Facing Our Risk Empowered: www.facingourrisk.org
Find A Genetic Counselor: findageneticcounselor.org
ICARE - Inherited Cancer Registry (free): inheritedcancer.net
NCCN - National Comprehensive Cancer Network Guidelines: NCCN.org
Medicare Rights Center: www.medicarerights.org/about
Patient Advocate Foundation: www.patientadvocate.org/connect-with-services/case-management-services-and-carelines/
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