Scott Webb (Host): You may have heard about genetic testing for things like cancer and wondered if you're a good candidate to be tested. Well, my guest is here today to tell us about the pros and cons of genetic cancer testing, who's a good candidate, and more. I'm joined today by Rachel Sugalski. She's a Licensed and Board Certified Genetic Counselor with the Valley Health System.

 Welcome to Conversations Like No Other, presented by Valley Health System in Ridgewood, New Jersey. Our podcast goes beyond broad everyday health topics to discuss very real and very specific subjects impacting men, women, and children. We think you'll enjoy our fresh take. I'm Scott Webb.

Rachel, it's so nice to have you here today. We're going to talk about cancer and genetics and genetic testing for cancer and all that, that implies. So it's great to have you here. Thanks for joining me.

Rachel Sugalski, MS, LCGC: Thanks for having me.

Host: Yeah, it's a pleasure to have you here. These are the ones where I know I'm going to learn something. No pressure on you. But I feel like I'm going to really learn something from you today. So, let's just start with kind of a broad question. What are the pros and cons of genetic testing?

Rachel Sugalski, MS, LCGC: So genetic testing for hereditary cancer predisposition can be really beneficial in that it can help people understanding their specific risks for developing cancer in the future and then use that information for more targeted screening and prevention strategies. The drawbacks of genetic testing is sometimes people can feel anxiety related to the risk of cancer in the future, it can sometimes be complicated for families. But I may be biased, but I certainly believe that the benefits outweigh those risks.

Host: Yeah, I see what you mean. I was thinking about this. I was thinking kind of like about myself. It's like one of those things where we want to know, right? We maybe need to know, it's such important information to have, but of course it could be a little scary, right?

Rachel Sugalski, MS, LCGC: Absolutely. One more risk that I just thought about is sometimes people are afraid of the possibility of insurance discrimination after they get results that indicate that they may have a higher chance for developing cancer.

Host: I see what you mean. Yeah, we're going to cover later about insurance and the coverage, for all of this and get into some of that anyway. Just wondering, is there an age limit on who can get tested? Is there a certain minimum age or maximum age? How's that work?

Rachel Sugalski, MS, LCGC: There is no maximum age for who should have genetic testing for hereditary cancer, and there isn't really a minimum age, but most of the genes that we test for, and there are exceptions to this; most of the genes that we test for the cancer risks are occur during adulthood. So generally we do not recommend testing children for conditions that won't affect them until they reach adulthood.

We like to protect autonomy. And if we test children, we don't think that they really have the ability to you know, decline as adults. They already have that information. This isn't information that we can unknow.

Host: Yeah, it's such a good way to put that, right? Once you know, you know, good, bad, or otherwise. Do we know, uh, Rachel, which types of cancer are hereditary? I've talked to lots of cancer doctors over the years and it all just begins to sort of be a blur in my mind. So maybe you can set the record straight. Like which ones are hereditary as far as we know?

Rachel Sugalski, MS, LCGC: So lots of different cancers can have a hereditary component. Most of the time though, in general, cancers are not hereditary. They are usually occur sporadically. They might be related to just aging or environmental exposures. Some cancers though are more likely to be hereditary than others. Even though breast cancer is a common cancer and in 90 percent of the time it is not hereditary; breast cancer is one of those cancers that we can see with certain inherited syndromes like the BRCA1 and 2 genes, ovarian cancer has a, a higher likelihood of being hereditary, pancreatic cancer can be hereditary, colon cancer, uterine cancer, some other rare cancers can be hereditary too, but those are the big ones.

Host: Yeah. Yeah, you mentioned earlier there, you touched on the insurance coverage, right? So wondering, maybe you can take us through this, you know, no pressure here, not working in the insurance industry, but in your experience anyway, so we're talking about the results, and depending on the results, and if the testing does come back that you might be predisposed, maybe is the way to put it, towards a certain cancer, then how does that work with insurance? Do they just immediately raise your rates because you might develop a certain cancer at some point? Can you kind of break that down for us?

Rachel Sugalski, MS, LCGC: So, there is a law called the GINA Act. It stands for the Genetic Information Nondiscrimination Act. And what GINA says is that your health insurance cannot call your genetic information a pre existing condition and deny you coverage. However, GINA does not apply to life insurance, or disability insurance.

So theoretically, if you knew that you had a hereditary predisposition to cancer, that is something that, you know, your life insurance company could ask you about if you were to buy new life insurance. Do not believe it's an issue if you already have life insurance, but if you wanted to buy new, that could be potentially, I think, more of a theoretical concern, but could happen.

Host: I see what you mean. Right. So maybe not so much our medical coverage, but life insurance. Interesting to think about that. Is it a pre existing condition or it might be a pre existing condition? So when we think about who gets tested or who should be tested, do people with cancer get tested or is it just their family?

Rachel Sugalski, MS, LCGC: Generally the best approach, the most informative way to do it, is to test the most suspicious person in the family. So yes, the person who has cancer is the better person to test than a family member that does not have cancer. And the reason for this is because we like to see if we can figure out why that cancer developed. And if we can identify an underlying inherited cancer susceptibility condition or mutation in a specific gene, like for example, a BRCA gene mutation in someone who has had cancer, then the close relatives of that individual could be tested to see if they've inherited that mutation as well.

If you have a mutation, it's 50-50 that you pass it to each of your children, and you likely inherited it from a parent. So your siblings also have a 50 percent chance. If a mutation is identified in an individual, then those other close relatives can simply be tested to see if they have it or if they don't.

Host: Interesting. Yeah, I see what you mean. The most suspicious, cancer wise, of course, because we all maybe have other suspicious relatives who don't have cancer, but we don't need to. That's a separate podcast, probably, right? Right. All right. So I'm with you so far. You mentioned earlier, we touched on the pros and cons. Are there any ethical considerations regarding genetic testing?

Rachel Sugalski, MS, LCGC: We talked also about the age limit for genetic testing. And I do think that that is something that comes up a bit as far as ethics. As I mentioned, we don't like to test children for adult onset conditions. And the reason for that is because we like for children to be able to make up their own mind as adults is if this is information that they want to have.

And if we test them as children, we are taking away their ability to do that. Some other ethical considerations that come up, is that other family members can often infer their status as a mutation carrier through other people's genetic testing results in the family. For example, if your mother's sister had ovarian cancer, and you find out that, that, that mother sister with ovarian cancer actually was tested and has a BRCA gene mutation, and you want to be tested also, and you find out that you have it as well, now we know that your mother is a carrier for it.

And she might not have wanted to be tested, but she can infer her mutation status, based on your result and her sister's result.

Host: Yeah. I see what you mean. It's a lot to take in, you pros, cons, ethical considerations, suspicious family members, but I think I'm still with you. Hopefully listeners are as well. Just want to have you take us through like a typical appointment. What happens for folks when they come in to have these conversations?

Rachel Sugalski, MS, LCGC: So, when you meet with a genetic counselor, we're going to go through your medical history and your family history and do a little bit of a risk assessment. We'll look for features that might suggest the possibility of an underlying inherited cancer condition. And then often genetic counseling involves talking about the option of genetic testing. So we'll go through the pros and cons and risks and benefits of the information, how the information can be beneficial to you, how it might change your actual cancer screening, cancer management in some cases, determine if you meet criteria for genetic testing, and then ultimately support you in whatever decision you make about that.

Genetic counseling also can sometimes take on more than one session. A lot of times we'll go over the results after the testing is back. And the results may mean something different depending on the situation. So, a normal result for one person might mean something different than for somebody else. So even the result sessions are very targeted to that individual situation.

Host: Yeah, definitely not just a one size fits all, of course. And we talked about insurance earlier, be it medical or life, in terms of test results. How about for the actual just genetic counseling? Does insurance typically cover that?

Rachel Sugalski, MS, LCGC: Insurance usually covers genetic counseling and also usually covers genetic testing. But often you need to meet certain criteria. You need to be suspicious enough for an underlying inherited cancer condition, before insurance will cover genetic testing. However, not everybody that will have a genetic condition will meet their insurance company's criteria.

 Out of pocket testing is now more affordable than it has been in the past, and during the session, we can help you understand whether or not you'll likely meet criteria or have an issue. But most labs are now offering a cash price of around $250, even for those people that don't meet insurance company criteria.

Host: Yeah, and it's easy for me to say, of course, but, you know, 250 sounds like a bargain when we think about the information you may get from that, right? Is that your take on that? Like, even if you have to pay out of pocket, it's such important information?

Rachel Sugalski, MS, LCGC: That's how I feel also. And also historically genetic testing was always very expensive. So, I think with the new technology, the cost has come down quite a bit. We are also are able to look at multiple genes simultaneously, whereas in the past we had to really, you know, focus in on what gene we were the most suspicious for, go down the list from there, and usually we would run out of energy and money before we got very far.

But now genetic testing usually takes the form of a panel, which lets us look at multiple genes all at the same time for the same price.

Host: That's amazing. You mentioned technology there, it got me thinking, it feels like the field of genetic testing itself has just changed and grown so much, maybe you can kind of break that down for us, as you were saying, you know, used to be you'd test for one thing and now you can test for many things. What else do we need to know about the field?

Rachel Sugalski, MS, LCGC: So yeah, it does change, and it changes quite rapidly, in a lot of different ways. The technology, in the actual testing changes quickly, and sometimes, in the past, people had genetic testing just for BRCA1 and 2 because that was all that was available, you know, 15, 20 years ago.

Now we have panels, and so sometimes people who have had testing in the past need to revisit, check in again, see what's new, and I expect that this will happen again in the future just because of the pace of change in genetics. On the other end, the criteria for who warrants genetic testing also changes with new information.

That's not so much of a technology issue, it's more of an information issue as we learn more about these different genes and how they present in a family and even, sometimes therapeutic implications for some of these genes; the criteria for who should have testing, broadens.

Host: Yeah. And we touched earlier, we were talking about some of the ethical considerations and you mentioned, folks inferring based on someone else's results. Well, I'm her sister. So therefore, you know, based on her results, I can infer some meaning from that. I'm just wondering, you know, when we think about genetic testing and if you are a sibling, let's say, would other siblings results necessarily be the same? Is that how that works?

Rachel Sugalski, MS, LCGC: No. Yeah. So that's a very good point. If a sibling is a carrier, the other sibling has a 50 percent chance, and that's regardless of gender, for most of these genes. If a parent is a carrier, it's 50-50 for each child. And just because one tests positive doesn't mean that the other will test negative or positive or vice versa. It's like flipping a coin each time.

Host: I'm going to put that on the scary part of that. My takeaways, you know, when you think about that, like you're really going to be flipping a coin, but just metaphorically anyway, like having that coin, being able to flip that coin as you're talking about the advances in technology and who can be tested and what we can test for. It just all seems like mostly pros, right? Just a few cons. Just want to finish up here and ask you, you know, besides predicting future health risk, what else does genetic counseling do?

Rachel Sugalski, MS, LCGC: I think of it as a very empowering thing.

Host: Okay.

Rachel Sugalski, MS, LCGC: Having the information, understanding what your risks are; allow you to be proactive. You may not think about your risk, but we all have a risk for cancer. That's why we start our mammograms at 40 and we do them once a year and we do our colonoscopies at 45.

That's based on general population. But if you understand that your risk is different, we can be much more targeted in our screening. It really allows us to be proactive. The information doesn't change what already exists. It only allows us to take action. I really do see that as like an empowering thing.

Host: Yeah, I couldn't agree more. I set the bar high for you today to teach me something so I could learn from you today, and I absolutely have, and you're so right, like knowledge is power and knowledge can be a little scary, of course, but when it comes to cancer and knowing your risk, early diagnosis, early treatment, like those are all things that are important to survival. Right?

Rachel Sugalski, MS, LCGC: Absolutely, having this information can be life saving in many cases. We can, you know, really take ownership of it and make a big difference and figure this out for families that maybe were seeing this for generations and generations, knowing something was going on, feeling like cancer was inevitable. Finding out if your carrier lets you, you know, take action. And alternatively, you can be negative for something that's in your family.

Host: Right. Rule it out. Right.

Rachel Sugalski, MS, LCGC: Understand that your risk is baseline.

Host: Yeah. It really is empowering. It's been good stuff today. Learned a lot. I'm sure listeners agree. Thank you so much.

Rachel Sugalski, MS, LCGC: Thank you.

Host: And for more information about genetics services at Valley, please visit valleyhealth.com/genetics. And if you found this podcast helpful, please share on your socials and check out our entire podcast library for topics of interest to you. And thanks for listening to Conversations Like No Other presented by Valley Health System in Ridgewood, New Jersey. For more information on today's topic or to be connected with today's guest, please call 201-291-6090 or email valleypodcast@valleyhealth.com. I'm Scott Webb. Stay well.