What Your Ancestors Can Tell You About Cancer Risk: Julie Walker (Transcript)

Read here the full transcript of genetic counselor Julie Walker’s talk titled “What Your Ancestors Can Tell You About Cancer Risk” at TEDxCharleston 2024 conference.

Listen to the audio version here:

TRANSCRIPT:

Clasp your hands together. Look down. Is your left thumb on top or is your right thumb on top? Now switch your hand position so the other thumb is on top. It feels weird, doesn’t it? Almost like you’re holding a stranger’s hand. And believe it or not, it’s because this is encoded in our DNA. Our genes and the impact that they have on us is absolutely fascinating.

See, I’ve been interested in genetics since I was 15 years old. And no, we are not going to talk about how many decades ago that was. I am very lucky in that I found a way to take my love of genetics and my passion for helping people and find the incredible field of genetic counseling. As a genetic counselor, not only can I tell you why you prefer one thumb over the other, but I can work with you and your healthcare providers to uncover the secrets in your family history and to determine the health risk that you may face.

Understanding Cancer Risk

One day in clinic, I had a patient, Janet, come to me and she said, “I’ve never been worried about my risk for cancer before. I got my first mammogram at 40 last year like I was supposed to. But my mom was just diagnosed with breast cancer at 70. And now I’m worried about what that might mean for me.”

I had another patient, George, come and see me and he said, “Can you tell me when I’m going to get cancer?” See, for George, it wasn’t if, it was when. George had a crazy family history of colon cancer all on his mom’s side. Multiple relatives at multiple ages.

And finally, honestly, I had a patient, Maria, look at me and say, “I have no idea what I’m doing here. My doctor told me I needed to come see you about my cancer risk. But I don’t understand. I only have a grandmother with ovarian cancer on my dad’s side.”

Now Janet, George, and Maria, they represent the three different levels of risk that we face when it comes to cancer. Unfortunately, the bad news, folks, there’s no such thing as no risk of cancer. We all face some level.

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The Three Levels of Cancer Risk

Baseline Risk

Now Janet, she represents the lowest risk. That’s what we call the baseline population or general population level of risk. I was able to assure her that despite the new diagnosis in her mother, her risk was not higher than the average woman for breast cancer and that her yearly mammograms and yearly appointments with her doctor were appropriate for her.

Increased Risk

Now both Maria and George are at an increased risk. Wait a minute, Julie. Maria only has one person affected and so did Janet. So why is Maria at an increased risk? Well, the reason is the type of cancer. See, unfortunately, breast cancer is common so only having one relative at an older age isn’t concerning. But ovarian cancer is uncommon so seeing it at all is a concern.

So I talked to both Maria and George about undergoing genetic testing. Some people are born with a typo in their DNA that causes them to face high risk of cancer. Now when I say high, I mean potentially 80 to 90% risk of developing cancer. It’s what we call hereditary risk and it’s the highest risk a person can face.

Both patients underwent testing and you might be surprised to learn it was Maria who was positive and not George. So what do we do for her? Well, I certainly didn’t look at her and say “good luck, see you next year.” No, there are things that we can do to mitigate that level of risk.

Now Maria was young, had not yet started her family and like a lot of young women was on an IUD for her form of birth control. But an IUD does not give you any protection from ovarian cancer. But taking a birth control pill for up to five years can cut the risk of ovarian cancer in half. So Maria chose to switch her form of birth control and when she’s done having her children, we’ve talked about the possibility of her pursuing surgery. The idea is no ovaries, no ovarian cancer.

Familial Risk

But what about George? He’s not at that general population risk but he was negative so he’s not at that highest risk. He’s somewhere in the middle and that’s what we call familial risk. And there are still things that we do different. See, George needed colonoscopies like I’m sorry, every one of you in the audience will have at some point if you haven’t already. But George needed them earlier and he needed them more often.

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And this turned out to be key for George. He went into that first colonoscopy and the doctors found a polyp. And if you don’t know, it’s a polyp that eventually turns into cancer. So by having his screening, the doctors were able to find that polyp, clip it and remove it, literally preventing that cancer from happening.

The Importance of Family History

So whether you’re a Janet, a George or a Maria, hopefully you see that there are steps we can take to mitigate your risk. But if you don’t know your risk, you can’t manage it. And the key to knowing your risk is knowing your family history. But what if you don’t know your family history?

I’m glad you asked. See, I’ve been thinking about it and I’ve got the perfect idea. You’re going to wait for Thanksgiving. I mean the whole family’s gathered together anyway, maybe the alcohol’s flowing, loosen those lips, loosen the inhibitions, right? Someone’s going to say something about health. That’s your opening.

You’re going to jump in and you’re going to say, “Speaking of health, what on earth did Uncle Joe die of?” No, actually that’s a terrible idea. Please don’t ambush your family on a holiday.

What you actually want to do is prepare your family that you want to have this conversation. Simon Sinek famously says, “Start with why.” Tell them why you’re asking these questions. Let them know that you just heard a fabulous TED talk all about how your family history impacts your risk. And so you’re going to be asking these questions.

Now family dynamics can be very tricky and everyone’s family is different, so a couple of things to think about. Who should be there? Should it be a one-on-one conversation? Are there maybe those loving family members that everyone loves and never gets mad at that should be there to help mediate? Is it an in-person conversation? Is it an over-the-phone conversation? Think about these details as you approach your family.

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Collecting Family History Information

And then collect what information you can. No one is a perfect historian, but some information is better than no information. You want to focus on three key factors:

Who had cancer, meaning how are they related to you? Don’t tell me Tom had cancer. Was it an uncle, a grandparent, a niece, a nephew, et cetera? And yes, both mom and dad sides matter, even for female cancers.
What kind of cancer did they have? Keep it simple. Breast, lung, stomach, ovary, et cetera.
Often the most difficult piece of information to get, how old was the relative when they were diagnosed? Not when they passed away if they passed. And benchmark it. Were they over 50? Were they under 50? Because young cancer is concerning in and of itself. We don’t need the details. Could you guess a decade? Were they in their 40s, their 50s, their 60s?

And finally, if people really have no idea, sometimes asking, “Well, how old were they when they passed?” You can work backwards to figure out how old they were.

Sharing and Acting on Family History

So the next thing you’re going to do is share this information. Share it with your other family members so that they can benefit. But most importantly, share it with your health care providers. Talk to them. Ask them, “What does this mean for my risk? Am I appropriate for genetic testing?”

Any doctor can order genetic testing. Your family physician can. Your OBGYN can, ladies. And a lot of doctors may refer you to a specialist like a genetic counselor to have a detailed conversation. But ask the questions, advocate for yourself, and make a plan to help lower your risk.

Conclusion

Remember, knowledge is power. Know your family history. Know your risk. Take action to lower that risk. And doing so gives everyone here the power to stop cancer in its tracks.