With Lynch Syndrome, knowledge alone isn’t power [PODCAST]

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“I imagine I would have, as I’m sure so many others do, headed to the Internet, reading both accurate and inaccurate information. While much of my visit with my genetic counselor feels like a blur, I left that meeting with a list of answered questions, referrals to specialists, contact information for virtual support groups, and a friend by my side holding my hand. I am grateful that I know about my mutation and live by the phrase “knowledge is power.”

But when I imagine the thousands of people receiving the news that they have Lynch through a report, I prefer to believe that knowledge is power only when it is accompanied by context and support. March is colon cancer awareness month, and March 22nd is Lynch Syndrome Awareness Day. There is no better time to make a plan to talk about the history of cancer in your family with your loved ones, including the tough topic of colon and rectal cancers; consult a genetic counselor. And arm yourself not only with knowledge but context and support.”

Kerry E. Evers is a psychologist.

She shares her story and discusses her KevinMD article, “With Lynch Syndrome, knowledge alone isn’t power.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today in the show, we have Kerry Evers. She’s a psychologist, and she wrote the KevinMD article “With Lynch Syndrome, knowledge alone isn’t power.” Kerry, welcome to the show.

Kerry E. Evers: Thank you so much for having me. I’m thrilled to be here.

Kevin Pho: We’ll get into the article in a little bit, but first off, can you share your story and journey to where you are today?

Kerry E. Evers: Sure. So I am a behavior change specialist. I’m a psychologist by training, but not one who has a couch in my office. What I do is I actually run a company that helps to increase people’s well-being and helps them change their behavior in many different ways. It started off with a lot of health behavior change, such as smoking, weight management, and stress management, but we also work in the area of financial well-being, emotional and mental well-being, and social well-being. So we develop programs for people that other organizations can implement, many times through computer or coaches or counselors.

So I first got my start in this area by doing cancer prevention. My family had a very strong history of cancer, but at one point my cousin was diagnosed with a very advanced colon cancer. And unlike many of our other relatives who had been diagnosed early, including his father, who had passed away in his early 40s, someone picked up on the fact that this was more than just hereditary, or something that ran in our family, and found out that he in fact had what’s called Lynch syndrome. And before he passed away, he asked all of the cousins to make sure that we had been tested.

So, working in the health care industry, I waited a little bit. I waited for things like the GINA Act, the Genetic Information Non-Disclosure Act, to be passed. I looked into a lot of things, read academic journals, and eventually did get tested and found out that I too had the genetic mutation at MLH1, which is one of the forms of Lynch syndrome.

And one of the things I like to say to people is a lot of us have heard about genetic breast cancer, BRCA, ovarian cancer. Lynch syndrome is much less known. It’s becoming more and more, but with Lynch syndrome, you are predisposed to about 12 different types of cancer. Colon cancer is the most common, and you tend to develop them at a much younger age, and often you have many primary cancers over a lifetime. As an example, my father has had four primary cancers and is still alive and doing very well.

It’s been a journey, and I’m thrilled that I’ve connected with a lot of other people who have Lynch. I’m what many people call a previvor, meaning that I know I have a genetic predisposition, but I do not have cancer. I’ve never been diagnosed with cancer. But because of my genetic predisposition, I undergo many, many, many tests a year, many invasive tests, and have also had to have prophylactic surgery, such as hysterectomies, and some people in my family have had parts of their colon removed before they’re diagnosed with cancer.

So that is kind of where I’m at. I was able to combine both my academic life and my personal life and do a lot now in terms of helping other genetic cancer previvors, helping them get through the brainstorm that is going through all these tests and wondering if the next time you go into the doctor, you’re going to find out you have cancer.

Kevin Pho: Can you talk more about your story in the KevinMD article, “With Lynch Syndrome, knowledge alone isn’t power”? Now, you mentioned your family member that was diagnosed with cancer. What was it about that cancer that made the physician team suggest potential Lynch syndrome?

Kerry E. Evers: Yeah, it was a very astute physician that we were all very thankful for. It was because he was diagnosed very early, so early in terms of his age, not in terms of the stage of the cancer. His father had had two primary cancers around the same age, pancreatic and colon, and other people in our family, including my father, had been diagnosed with colon cancer in their 40s. At that time, so we’re talking 15 years ago, colon cancer was not as prevalent in individuals in that age group. Nowadays, it is becoming more and more common for younger individuals to have colon cancer. Some of those are due to genetic predispositions; others are just lifestyle, or it just happens. But at the time, the physician said, “We really need to look into genetic testing,” did a full-panel genetic test, and that’s when the Lynch syndrome was found.

Kevin Pho: You mentioned other cancers other than colon cancer are associated with Lynch syndrome. What are some of the other common ones?

Kerry E. Evers: Pretty much anything in your gut. That’s one way to say it. But colon, rectal, small bowel, pancreatic, liver, urinary. For women, it includes pretty much all of your ovarian. Breast cancer is starting to be looked into. There are some who say it is part of Lynch syndrome, others who do not. It’s to be determined. Certain forms of skin cancer, brain cancer, bladder cancer. So it’s quite a list.

Now, some of them, like colon cancer, it is a very high risk. Others, brain cancer, it’s a little bit higher than the general population, but not so much that, as an example, I do not have brain scans all the time, because in my family, that’s not one of the cancers that was prevalent. For my family, it’s been more pancreatic and colon.

Kevin Pho: And when people with Lynch syndrome get diagnosed with colon cancer, you mentioned they are a younger cohort. About how young?

Kerry E. Evers: A lot of people say it’s typically in your 40s. Now, as you get older, the risk becomes more so. Through your lifetime, if you have Lynch syndrome, depending upon the specific mutation, so I mentioned I’m MLH1, there are four other mutations, but in our lifetime, it’s about an 80 percent risk of getting colon cancer. So it’s pretty high. It also tends to be multiple primary, so many people have multiple primary colon cancers. So not a recurrence, but it’s actually a new form of cancer, and they tend to be very aggressive.

One of the benefits of knowing that you have Lynch syndrome. Most of the time, if they take out a polyp or they find cancer in your colon, they will test it to see if it is as a result of Lynch syndrome. There are different forms of therapies that they will use. Immunotherapies are becoming very important. But the way you get treated is a little bit different than if it’s not related to a Lynch syndrome diagnosis.

Kevin Pho: And how is Lynch syndrome?

Kerry E. Evers: It’s a 50-50 chance. If one of your parents has Lynch syndrome, you have a 50-50 chance of also having Lynch syndrome. And if you have two parents, then obviously your risk goes up a little bit, and that’s a little bit of a different diagnosis because of that.

One of the most important things that I can recommend to physicians, to clinical staff, but also to individuals, is if you have a strong hereditary cancer, or your family has a lot of cancer in your family, think about the potential of getting tested for different genetic conditions. And it’s not just Lynch syndrome. There are a lot of other ones that are now being diagnosed and being identified as we become more attuned to genetic sequencing.

But talking to your family, understanding what other people in your family have had. Colon cancer is not the type of cancer people talk about readily. You don’t typically just start up a conversation about your last colonoscopy. It’s not a comfortable conversation, but it’s really important to know that family history, because then you can talk to your care providers and really determine if maybe genetic testing is necessary, or maybe just increasing your surveillance of colonoscopies and endoscopies is important for you. And that’s one of my main messages. Communication about family history is so important.

Kevin Pho: So to go back to your genetic test, you received the result from the clinical care team. Tell me what happened next after you received the results.

Kerry E. Evers: Yeah, so as I mentioned, I went into it thinking I knew a lot. I did all of my academic research. I was in graduate school for a long time. I had a friend with me. They had told me I had to have someone with me. They also called me ahead of time and said they wanted to have a student in the room, because they wanted to learn how to give results. At that point, I knew that I was definitely positive, because I just picked up on the fact that they wanted a genetic counselor student in the room with me.

The big thing is, for me, a lot of the new genetic testing is being done remotely. You can get genetic tests through just those over-the-counter, internet-based testing kits. And for me, even though I had good knowledge, it’s still a blow. It is still very emotional. It’s tough to take in, and you have a lot of questions. How is this going to affect my insurance? Do I need to see a specialist? What does it mean for employment? Can it be used against me in terms of employment and insurance? What does it mean for my family? What about my fertility? All sorts of questions.

And I think if you just get those on paper, or if you get them through a portal, and you don’t have any context, you don’t have someone to give you a bit of a guide, the first thing most people do is go to the internet, which can be a wonderful source of information. It can also be a really scary source of not correct information. So I really advocate for people to talk with a genetic counselor, talk to a physician or care team member who has knowledge of genetic cancer, so that they can really just at least start you on that journey, so that it doesn’t overwhelm you with emotion and fear.

Kevin Pho: So one thing you mentioned was the association with your employer and your diagnosis, and one thing that you did mention was the Genetic Non-Discrimination Act, which is one of the reasons why you waited before taking a test. Tell us more about that act.

Kerry E. Evers: Yeah, so GINA protects individuals from their genetic information being used in terms of employment or medical insurance. It is something to keep your eye on. Acts like this can change, and new laws or new regulations can be put in place. Currently, you cannot be discriminated against based upon genetic information from employment or from your medical insurance. However, long-term care and life insurance can deny you coverage because of genetic information. Other specialty types of insurance can potentially use that if they have that information.

So, one of the things when I talk to people: Before you go to get tested, talk to your genetic counselor, talk to someone who knows the area. There might be things you might want to do before you get tested, things you might want to get put in place on the off chance that you do test positive for some sort of genetic mutation.

And I did want to mention that the latest estimates are that one in 279 individuals do carry a genetic mutation related to Lynch syndrome. That’s a really high number. Having this mutation does not mean you’re going to get cancer. So there are many people who will never know that they have this mutation. However, if you do have it and you know it, there are things you can do. You can protect yourself. As I mentioned, my father is a four-time cancer survivor. He’s living a great life. He’s in his mid-70s. He’s doing great. And that’s because he had the knowledge and was able to really seek prevention, surveillance, and then appropriate treatment when needed.

Kevin Pho: We’re talking to Kerry Evers. She’s a psychologist, and she wrote the KevinMD article “With Lynch Syndrome, knowledge alone isn’t power.” Kerry, what’s one thing that your clinical care team did well, and what’s one thing that you think that they could improve?

Kerry E. Evers: One of the best things was that they admitted: I live in Rhode Island, and at the time there were not any specialists in Rhode Island who dealt with Lynch syndrome, and the genetic counselor in Rhode Island said to me, “You should really seek a cancer center,” and gave me references there. So I started receiving all of my surveillance and care at Dana-Farber, which has been wonderful. A lot of that has changed. A lot more physicians and care teams are aware of Lynch syndrome and are able to help you manage it, so you don’t necessarily have to seek out a cancer center. But having someone help you, hold your hand a little bit, point you in the right direction, is really, really helpful.

One of the things I might change about how it was delivered to me, and how I went through it, is that they had kind of given me hints over the phone that I had tested positive, and I picked up on those. And that’s one of the reasons why I’m so passionate about making sure that people, when they receive this news, have the appropriate context and the appropriate supports in place, because it really can be a distressing time to get this information, and really helping people to increase their resilience as they’re going through some of these programs, the many tests you have to go through. And this is for any type of genetic medical information you might receive.

But I think I would have loved to have been told that this is not a death sentence. This is knowledge. With the right context and information and support, it’s something that can be managed, and really, all it is is helping you to manage your health in a better way.

Kevin Pho: For those who are interested in finding out more about Lynch syndrome, what kind of resources do you recommend?

Kerry E. Evers: Yeah, there are a lot of support groups online, but there are two groups in particular. AliveAndKickn is a nonprofit organization that is run by Robin and Dave Dubin, D-U-B-I-N. They run a support and registry and all sorts of information specific for Lynch syndrome individuals. In addition, FORCE, which was originally developed specifically for BRCA and other types of genetic cancers, has now expanded to include all sorts of hereditary cancer syndromes and genetic cancer syndromes. And they do have a lot of support for individuals with Lynch, support for clinicians who are looking for information on Lynch and how to help their own patients, and providers who would like to provide counseling. In addition, they also have a registry of clinical trials that are available for people who might be interested in getting involved in that.

Kevin Pho: And my final question: What are some of your take-home messages that you want to leave with the KevinMD audience?

Kerry E. Evers: In terms of pulling together both my professional and my personal life with Lynch syndrome, with any of these diagnoses or identifications of specific genetic mutations, a lot of it is about behavior change, and that’s an area that I work in. I have a new podcast called The Behavior Change Architect. But a lot of this is about encouraging people to talk to their care team, get the appropriate information, know how to weed out the non-information that may not be helpful, and then really make sure you’re on top of your surveillance, and get support where you need it. Talk to other people who have a similar diagnosis. Talk to your family members. Make sure that you’re telling people about what’s happening, because it most likely affects them as well, not only in terms of supporting you, but in terms of their own health.

Kevin Pho: Kerry, thank you so much for sharing your time and insight, and thanks again for being on the show.

Kerry E. Evers: Thank you so much. I really appreciate it.

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