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The PancChat Podcast is a collaborative effort from Let’s Win Pancreatic Cancer and the Pancreatic Cancer Action Network (PanCAN), inspired by the long-running #PancChat Twitter/X chat.
Hosted by award-winning journalist Alisyn Camerota, each episode features conversations with leading researchers, clinicians, patients, and advocates who are shaping the future of pancreatic cancer care and research. Together, we deliver expert insights, personal journeys, and the latest breakthroughs—bridging the gap between science and lived experience.
Whether you’re a patient, caregiver, healthcare professional, or simply want to learn more, join us to connect, be inspired, and learn how you can help to accelerate progress in the fight against pancreatic cancer.
Everybody, and welcome to Episode nine of the Panc Chat Podcast. Today we will talk to a genetic counselor about the importance of genetic testing and knowing your family history. Take it away, Alison.
Alisyn Camerota:Hi, everyone, and welcome to the ninth episode of Panc Chat. In the next two episodes, we will take a closer look at genetic testing and the role it plays in the treatment and earlier detection of pancreatic cancer. In 2018, genetic testing became part of the standard of care for pancreatic cancer, meaning that all patients should undergo testing. We want to thank our sponsor, Revolution Medicines. To learn more about genetic testing, we are talking to Jessica Everett, who can help patients understand what happens during the testing process.
Alisyn Camerota:Jessica is the senior research strategy director at the Morris Cancer Center at UC San Diego. She is a genetic counselor who specializes in treating patients with pancreatic cancer. In addition to her work in the clinical setting, Jessica has been working on the development, design and implementation of the PRESEAD Consortium for Early Detection since its inception in 2020. Jessica, thanks so much for joining us.
Jessica Everett:Thank you for having me. It's nice to be here.
Alisyn Camerota:Okay, so let's start at the beginning and tell me why should patients get tested?
Jessica Everett:A great question. So in, people who have a diagnosis of pancreatic cancer, we know now that about ten percent of the time, if we test for, known genes related to inherited cancer susceptibility, we will identify a genetic change or risk factor that could be relevant either for making decisions about taking care of that particular patient or for taking care of other people in their family or both. And that ten percent number is a bit higher than people previously anticipated. You mentioned that this became standard of care in 2018. I've been doing this much longer than that.
Jessica Everett:And I can tell you that for many years, we were only offering genetic testing to patients with pancreatic cancer if they had a really strong family history of other types of cancers. So that meant that we needed to make sure that someone was asking questions about family history and documenting that family history. And then typically, meant referring that patient with pancreatic cancer to go see a genetic counselor at another time. And all of those steps added complication. Part of how we got to this point is that, the technology for genetic testing got faster and less expensive, And we started to apply it more broadly and started to learn, oh, okay, about half the time when we find genetic change related to cancer risk, it's in a person who wouldn't have met those criteria that we were using to determine who should get testing and who should not.
Jessica Everett:So that's why the 2018 guideline became, we should offer this testing to everybody with pancreatic cancer. And that's the standard that we're still following now.
Alisyn Camerota:But once you have been diagnosed with pancreatic cancer, what's the benefit of genetic testing at that point?
Jessica Everett:So there are some specific inherited conditions where we know implications, and information that we can learn that can help us to take care of the person with pancreatic cancer. So, people who carry specifically BRCA mutations, again, we know that, those folks respond well to platinum based therapies. We know that there are, PARP inhibitors, other types of medications that can be used to take care of those patients. It can actually be relevant to the oncologist in making, the treatment plan, usually not for the first, treatment option that we would choose, but it does inform the pathway of treatment. The other one that's important for us to identify, is a rare cause of pancreatic cancer called Lynch syndrome that's better known for causing colon cancer risk.
Jessica Everett:And those are patients again who, most pancreatic cancers don't respond well to immunotherapies, but the ones that are related to Lynch syndrome, can respond to medications that we might not typically use to treat pancreatic cancer. So it's important for us to find those. Again, it's rare, but we want to know about them when they happen.
Alisyn Camerota:That's really interesting.
Jessica Everett:And then, of course, for family members is the other thing that we're thinking about.
Alisyn Camerota:Well, I do want to talk about family members in a moment and at what age family members should get tested. Let's put a pin in that for a second because I want you to explain the role of the genetic counselor. At what point do you get engaged in this whole process?
Jessica Everett:Yeah. So this is also, something that has changed and evolved over time. So I mentioned, in the the pre twenty eighteen days when, we needed to get a detailed family history to see if people met criteria for genetic testing to be covered and all of those things had to happen. Often genetic counselors would meet with patients prior to genetic testing to sort of get all of those details, to talk about the testing, what we were going to learn. And there's been a real shift over the past few years where we have figured out, if we know that everyone with pancreatic cancer should get genetic testing And the oncologists we work with tell us this is relevant information that we need to help us with our treatment decisions.
Jessica Everett:The way that it works now here and at many institutions is that patients are frequently now when they have a diagnosis of pancreatic cancer, maybe have that genetic testing coordinated with their oncology team and may not talk to a genetic counselor until the results come back. So that's sort of a shift in how things have happened, where, a lot of people go through the process and only end up talking to one of us, if there's a finding on their genetic testing that is relevant and needs additional follow-up. Or of course, we certainly make ourselves available if people do have, more questions or worries or concerns that they want to talk through before they go ahead with genetic testing.
Alisyn Camerota:Is it true? This is my impression, but you can tell me if this is reality that genetics are changing so fast that just because a genetic predisposition hasn't been found today, that that doesn't necessarily mean that six months from now, if somebody were to be tested, it wouldn't be.
Jessica Everett:Yeah. It is a very rapidly changing field. It's, one of the things I like about working in this space is there's really never a chance for me to get bored because there is always, new technologies coming along, new discoveries coming along. And I do think, you touch on a really important point, which is the genes that you inherit don't change, right? So if you have an inherited risk factor, it's there from the time that you're born and it stays there.
Jessica Everett:And that doesn't change. What changes is the technology that we have to be able to try to identify those genetic risk factors. So, for example, we know in families where two or more people have had pancreatic cancer that are closely related to each other, we call that familial pancreatic cancer. And we know that right now, today, if we do genetic testing in patients like that who have pancreatic cancer themselves and have family members with it, we only identify a genetic risk factor about fifteen percent of the time, which doesn't mean that other eighty five percent isn't genetic. What it probably means is that there are still things left for us to learn about inherited risk factors that might help to explain that other eighty five percent.
Jessica Everett:So yes, in the time that I have been doing this, I have seen many evolutions of testing technology and have patients that we follow over time who we say, okay, you had this test five years ago, and now it's time to do an updated test where we can look at new genes or use a different, more sensitive technology to try to see if we can figure out, an answer for the risk in your family?
Alisyn Camerota:Yeah, I mean, I ask because I have a personal connection. My husband died of pancreatic cancer and he died shortly after his uncle died of pancreatic cancer. But there showed no that he had no genetic predisposition, but that's hard for us to believe. Right.
Jessica Everett:And we and I just came from a clinic this morning where we were meeting with many patients, healthy patients with family history of pancreatic cancer, who were here to talk exactly about these things, and just spoke to a patient and told her exactly what you are saying, that we don't say, okay, we found nothing on the genetic testing. That doesn't mean there's no inherited risk in your family. What we say is we don't yet know what is explaining this history in your family. And until or unless we can prove that you don't have shared risk, we're going to keep a close eye on you with screening to make sure that we detect things early if there is indeed risk there.
Alisyn Camerota:So, let's talk about that close eye because here again, it's quite personal to me and I know to so many families where, a parent, let's say, has pancreatic cancer. At what age should the children start to be tested?
Jessica Everett:Great question. So I think, there's a couple of things to know about that, which is what are the current guidelines that we're using for screening and where we may be headed over time, which I think both are important and relevant to think about. So right now, if a person has one family member, a close family member, a parent, or a brother or sister who had pancreatic cancer, there's not currently any recommendation that we should be doing regular screening for pancreatic cancer in people with a single family member. So for those patients, they do meet criteria for genetic testing. So if their family member with pancreatic cancer didn't have genetic testing, which still happens pretty commonly.
Jessica Everett:It might surprise you, you just said yourself that's been the guideline since 2018. But there are still many patients who don't ever get genetic testing for whatever reason. So if you have a close family member with pancreatic cancer, the National Comprehensive Cancer Network guidelines say you can be offered genetic testing. And then if we find a gene that's related to cancer risk, having a gene plus a family member, that does put you into a category where we would do regular screening for pancreatic cancer risk. The other group of patients that we screen regularly are people, as I mentioned before, who have two or more family members, in the family with pancreatic cancer, where at least one of them is a close relative, like a parent or a sibling.
Jessica Everett:So we have a lot of people who come to see us with a single family member. I think it's important for those patients and families to know that we're here to help you understand your risk, to help you get genetic testing, to see if you should be in screening, and then also to have you participate in registries where we can keep track of patients and families so that as these technologies evolve, as we said, we find new genes or, we all want to get to a point where we have an early detection blood test that might help us. And those are often patients, and families who are very interested in that sort of thing and want to be, at the top of the list to know when we have new technologies available. The other thing that I think is important is, obviously, patients may come to us and say, I have one family member with pancreatic cancer. And while I never want them to have to follow-up for this reason, we certainly have had families over time who say, Okay, now I have two, right?
Jessica Everett:When I met you before, there was just one. And now there is a second person in my family. So again, I think, we want to be a resource to families, even if it's not a family that needs regular imaging, we want them to know where to go when things change and what they should be watching for and when to get back in touch with us.
Alisyn Camerota:And so if you fall into that having two family members, how young is too young to start testing the children?
Jessica Everett:So this is, again, the data that we have right now would suggest, for screening for imaging of the pancreas, usually what we would suggest is that we start either at age 50 or 10 years younger than the earliest pancreatic cancer that was diagnosed in the family. So, this is based on, again, the data that we have about pancreatic cancer in families that even, in families with multiple cases or in families that have genetic risk, this still is a disease where age is a risk factor. So it's not necessarily something that we tend to see younger in families that are affected, with some exceptions, and we do take that into account. So there are some genes where if the gene is present in your family, we start before 50. But if it's family history only, fifty or ten years younger is the general rule.
Alisyn Camerota:Okay, that's really helpful. You know, many people, I'm sure you come across this, are nervous about getting tested. And so let's talk about the psychological aspect of this. I know people who outside of pancreatic cancer just who have you know, there's some sort of hereditary disease in their family and they say, I would rather not know that there is a genetic ticking time bomb that I am carrying. What do you say to those people?
Jessica Everett:I think that's a very common and very normal reaction. It's not uncommon for us to have one person from a family, make it in the door to see us and tell us, none of my family members, want to do this. And I think, the reason that I can keep coming to work every day is because, I know that if you have a genetic risk factor, it's there, right? The genetic test doesn't change whether you have a gene, that's causing you risk or not. The only thing that genetic testing changes is our ability to use that information to try to protect your health.
Jessica Everett:So I think the two things that are the biggest factor, I think, for pancreatic cancer are either not knowing what you're supposed to be doing. So I think there's a lot of people out there who don't even know that I should have genetic testing. And then the second thing is a patient who said, her parent and her parent's sibling both had pancreatic cancer. And she'd been told directly by a doctor who she trusted that there's nothing you can do. I'm going to screen you and it's still going to be late and there's no point in doing that.
Jessica Everett:And that's not correct information either. So I think sometimes, the only experience that people have with pancreatic cancer is it happened to people in my family, they got sick and within weeks they were gone or within a year they had passed away and, don't know that, the data so far shows us that if we are following people as part of a regular screening program, we can find early stage cancers that we can remove surgically and improve survival for people over time. So I think that's a message that we're still trying to get out there.
Alisyn Camerota:So let's say that someone does get tested and they do have a genetic predisposition. Once the results are back, what are those conversations like that you have with patients once they find out they have this?
Jessica Everett:Yep. So, for people who come in to see us for genetic testing because of their family history, so they don't have cancer themselves, I think part of what we try to do is some anticipatory guidance. Right? So before we have a test result back, starting to have some conversations with people about if we have a finding, here's the kinds of things that we're going to be talking about on the other side. So trying to get people prepared for what are the things I might need to think about so that it's not like a total surprise.
Jessica Everett:There's no need to withhold that information about what are we going to do if we find something. The other thing I think that's important to us clinically is, and I always tell patients this, if we have a finding, I'm not going to say, well, you have a gene, good luck, off you go. Part of my job is to make sure that we have connected you with the right specialists to take care of the screening tests that you need. So I think another important point to make is, even though I work, in the pancreas center, and that is the thing that I spend the most time talking about, all of the genes we know about that are related to pancreatic cancer risk are better known for causing other types of cancer. So, for example, BRCA2, which is one of the breast cancer genes, is the most common inherited cause of pancreatic cancer.
Jessica Everett:So if we find a BRCA2 gene, it's not just your pancreas that we need to be thinking about. You may need a breast specialist. We need to think about ovarian cancer risk. We need to think about prostate cancer risk. So, part of our job as well is if we are the first, clinic to encounter patients is making sure that we're not just thinking about their pancreas and leaving them on their own, but connecting them with the other types of specialists that they need to make sure that we're comprehensively taking good care of people.
Alisyn Camerota:Do you find that there are common misconceptions about genetic testing that you have to spend time clearing up?
Jessica Everett:I think, again, I've been doing this long enough to see that, it's become a much more normal part of medical care than it was when I started. So, in the early days, for example, of BRCA testing, we would have patients who would say, I don't want to do this testing with my name attached to it. I want to pay with a money order. I don't want anybody to know that I'm doing it because I'm afraid that it's going to cause me difficulties with my insurance or with being able to get care. And that has really shifted over time because we know now that having this information makes a difference in how we take care of people, and that it's important medical information that we should treat just like every other piece of medical information.
Jessica Everett:So that has really changed over time. Occasionally, we do run into, situations where people have other types of genetic testing and have some confusion about, what they have had and what it means medically. So sometimes that could mean, when a person has a diagnosis of cancer, again, it is now pretty standard to do sequencing of the tumor itself. And so that is a genetic test result that comes back and people will tell me, oh, my dad had genetic testing and had a KRAS mutation. And then we get the report and it's the tumor, right?
Jessica Everett:It's not an inherited risk factor. So there's some of that that comes up. Or people who will have sort of recreational genetic testing with something like 23andMe or some of these other consumer products and think like, oh, I had genetic testing and it didn't say anything about pancreatic cancer risk. So just being able to make sure that people get the right testing and the right information so that we can accurately talk about risk.
Alisyn Camerota:That's such a great point. 23andMe is not a comprehensive genetic test.
Jessica Everett:Correct. There's nothing wrong with 23andMe, but it is different from the medical grade testing that we talk about and offer to people in the clinic.
Alisyn Camerota:That's I'm so glad you point that out. But I don't blame people for thinking that not just the 23andMe part, but that that it could be held against them, that what do you mean back when, you know, there were preexisting conditions, stipulations for insurance before the Affordable Care Act, having a, you know, genetic predisposition to something deadly, I can understand why people would be worried about that being on their record.
Jessica Everett:For sure. And again, I have been doing this long enough to remember, in those early days, this is like, you know, the nineteen nineties. We didn't know. It was brand new and we didn't have decades of data to know how is this going to play out. So people, those kind of pioneer days, there were no guarantees around any of this.
Jessica Everett:And yeah, it was definitely understandable. And it really wasn't until we started to accumulate data where, physicians taking care of patients. In the early days, it was things like, this patient has breast cancer. And if they have a BRCA mutation, they may want to have a bilateral mastectomy. Like this is a treatment relevant question.
Jessica Everett:We need to know this to take good care of this person. And so it started to become more mainstream. And we started to see, for better or worse, insurance companies realizing like, oh, okay, it probably costs us less money to know if a person has a gene because we're going to give them, different care that is going to help them be, less costly to us over time, which is a grim way of thinking about it, but is the reality of how the insurance business works. So I think that has really led to a shift where it's become now, I think, not different from really any other medical test that you have where it's, you know, it's information that is needed to be able to make sure you get good care.
Alisyn Camerota:So, Jessica, what advice do you give patients or family members on how to approach these conversations with siblings, with children, or extended family members about inherited risk?
Jessica Everett:I just had a conversation about this again, this morning before coming on the pod with you. So think it is for children and family members. What I try to tell people is, if you carry a gene that's related to risk, we want to help you at least let your close family members know that this information exists and that they can then make choices for themselves. Right? So if you carry a gene and you have five brothers and sisters, I feel like my job is to help you let them know.
Jessica Everett:So we will often help to craft language for people that they can put into an email, written information so that they don't have to try to remember what am I supposed to tell my family. Here it is. This is what you can share with family members. And then what your family members choose to do with that information is sort of up to them. It's your job to let them know about it.
Jessica Everett:It's not your job to herd them all in for genetic testing. Everybody has to sort of make their own decision about that. And same with children. I think for children, we have conversations depending on where those children are in the age spectrum. So for most of the genes we're talking about that cause risk for pancreatic cancer, There's nothing we do differently to take care of people who are 18.
Jessica Everett:So often we'll talk about for young children, there's nothing that we need to do, nothing that they need to know about right now. It's usually, when people get into their 20s that we start having to think about, are there things not for their pancreas? It's usually other types of cancer screening that we need to think about. So, considering how much information people need at different points in their life. The other thing I always like to make sure people know about is an organization called FORCE, which stands for Facing Our Risk of Cancer Empowered.
Jessica Everett:It's a fantastic organization started by a woman who is a BRCA carrier herself. They have a reputable medical review board and have tons of great information for patients and families who are affected by hereditary cancer about things like, how do I talk to my kids? Are there studies or clinical trials that I might want to get into? What about this new blood test for cancer that everybody's talking about? So, that's a great source of information and also support.
Jessica Everett:So they have peer support, talk to somebody else about their experience talking to their family and have that, help inform your, approach. So that's another resource that I think is great for people to know about.
Alisyn Camerota:That's really helpful. I'm gonna check it out as soon as we're off the podcast. That's that is will be really helpful force. What have I missed, Jessica? What else do you want patients and their families to know?
Jessica Everett:I think, I guess just that we are here to be helpful to you. Knowing that there's a gene in your family just gives us the ability to use that information to help you and to help your family and that we are here on the genetics clinical side to make sure that you have the information and support you need to make the right and best decisions for you, And we can help you with that, over the course of time. So it can be very overwhelming sometimes to have this new information when a gene is identified in the family. And part of our job, I think, is to help patients and families break that into manageable pieces. Right?
Jessica Everett:So we don't have to think about what are we doing to take care of you for the rest of your life. We're here to help figure out what are we doing this year to take care of you and to make sure that we are doing the right things. And we are partners in this over time and making sure that as things change and evolve, you're getting the information and care that you need.
Alisyn Camerota:Well, Jessica Everett, thank you so much for answering all these questions and really, I think demystifying this whole subject matter. That's very, very helpful.
Jessica Everett:Great. I'm happy to help and, encourage people to reach out, to their local genetic counselor, if they have questions or concerns about their family.
Alisyn Camerota:That's great advice. Thank you very much for being on Panc Chat. It's been a pleasure to talk to you, and I want to thank all of our listeners for tuning in. I'm Alison Cammarata, and I'll see you next time.
Julie Fleshman:Hi, I'm Julie Fleishman, President and CEO of PanCan. If you or a loved one has been diagnosed with pancreatic cancer, navigating this journey can feel overwhelming, but you don't have to do it alone. Be sure to explore resources available to patients and caregivers through Let's Win and PanCan. You can find PanCan at pancan.org and Let's Win at letswinpc.org. Together, Let's Win and PanCan are committed to guiding you through every step of the pancreatic cancer journey, offering support, information, and hope.
Julie Fleshman:In our next episode, we will be speaking with Doctor. Asaf Moze about the science of genetic mutations, including hereditary risks and some of the types of mutations patients and families may encounter and what they mean. Don't forget to follow Pink Chat to get new episodes delivered twice a month right in your podcast feed. Pink Chat is available on all major platforms wherever you get your podcasts.