Even though you cannot change your genetic makeup, knowing your family health history may help you understand your personal risk of developing any kind of health concerns. Today, we’ll learn about how to better understand your family history, and how that may impact your risk factors. We will also talk about how to talk with your doctor and how to make better-informed choices. We’re going to help empower you to take an active role in decision-making about your health. To help us learn how to better understand our family health history, which helps us better understand our health risks, Dr. Robina Smith, the Medical Director and Principal Investigator at WCCT Global Oncology is joining the podcast.
Dr. Smith is a fellowship-trained breast cancer surgeon and a leading expert in the field of breast oncology specializing in hereditary cancer and genetics as well as high-risk breast screening.
About Dr. Smith
Dr. Smith is a much-lauded Physician and Surgeon and has extensive therapeutic expertise to bring to her current role as Medical Director with WCCT Global. Prior to joining WCCTG in August 2017, Dr. Smith was the Medical Director of Oncology and Medical Affairs at Ambry Genetics, a genetic laboratory company in southern California, which allowed her to apply her years of practical medical experience to the clinical trial arena. Dr. Smith is also a Fellowship-trained Breast Cancer Surgeon and a leading expert in the field of Breast Oncology specializing in hereditary cancer syndromes, high-risk screening, genetics, breast education and awareness. She has 10+ years of practical experience in taking care of cancer patients, establishing breast cancer surgery service, liaising with the Commission on Cancer for American College of Surgeons and leading multidisciplinary breast conferences and tumor boards.
Additionally, Dr. Smith brings to the table a strong understanding of clinical trial design and administration, as well as managerial and leadership strengths that have been honed in her various roles in the medical field, through her volunteer work and
through her pioneering of new treatment resources for patients. Not only is Dr. Smith adept at developing educational programs for medical professionals and patients alike, she is also an award-winning speaker, presenter, author and medical illustrator.
Transcript
Speaker 1: [00:00:00] Thank you to Sideways8 for sponsoring this podcast.
Adam: [00:00:08] From Susan G. Komen, this is Real Pink, a podcast exploring real stories, struggles and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
[00:00:20] Even though you can’t change your genetic makeup, knowing your family health history may help you understand the personal risk of developing any kind of health concerns. Today, we’ll learn about how to better understand your family history and how they impact your risk factors. We will also talk about how to talk with your doctor and how to make better-informed choices. We’re going to help empower you to take an active role in decision making about your health. To help us learn how to better understand our family health history, which helps us better understand our health risks, let me introduce Dr. Robina Smith. Dr. Smith is the Medical Director and Principal Investigator at WCCT Global Oncology. Dr. Smith is a fellowship-trained breast cancer surgeon, and a leading expert in the field of breast oncology, specializing in hereditary cancer and genetics, as well as high-risk breast screening. Dr. Smith, welcome to the show.
Robina: [00:01:11] Thank you, Adam. Thank you. It is a pleasure to be here.
Adam: [00:01:14] Your credentials are genuinely impressive, as well as hard to pronounce when you’re reading them out loud, which makes them even more impressive. So, I really appreciate you being here and just talking to us about the family risk, which I think is such an important thing. So, let’s just dive in. Why is it important for everyone, but in particular women in related to breast cancer, why is it important to understand your family health history?
Robina: [00:01:43] Because what we think about cancer is that it by itself is a risk that everyone has, no matter the cancer, no matter where it’s coming from. Specifically for breast cancer, if you’re a woman— And a man, because men do get breast cancer; you have a lifetime risk that’s inherent to you when you’re born. I would tell my patients that when you’re born, you have this risk that comes with you and stays with you until we leave this earth. That’s the average risk that everyone has. So, if you’re a woman and you have breasts, and you live long— I think we’re living as long as eighty-five or so, if not longer; we’re bound to be exposed to things that cause these genetic changes within our normal cells that turn into cancer. That’s the average risk. So, most of our screening recommendations and guidelines are geared towards the average risk.
[00:02:30] So, the average lifetime risk for a woman with breast cancer, depending on her ethnicity, is anywhere from a 9% to a 12% chance risk. So, that’s very, very low. Right? You think “If I go to Vegas and if I do the roulette do I have a 12% risk of winning? I don’t know if I want to part with my money, but it’s a low risk.”
[00:02:49] Now, there are people, though, who based on their family’s genetic genes that are passed down from generation to generation, both from mom and dad’s side, their risk may be deemed to be moderate to high, meaning they are beyond the average risk. In order for us to identify them, and to screen them appropriately, or offer them preventative treatment appropriately, we have to be able to say, “Okay, what is your risk? How do we calculate it?” and we start to ask questions about the family. What genes or genetic mutations can be passed down from generation to generation that can change your average risk to a higher risk?
Adam: [00:03:27] When you say higher risk, and you just mentioned average risk is— I think you said it was 9% to 12%; when you say higher risk, what does that mean exactly?
Robina: [00:03:35] So, for example, moderate risk can be anywhere between a fifteen to a 20% risk of developing, let’s say breast cancer, and then you have high risk, which could be anywhere from 20% and higher. For example, those who identify who have the genetic mutations associated with genes that function in terms of telling cancer cell or telling normal cells when to divide, when not to divide, a checkpoint for cells that may be turning into cancer; we call these haplotype genes, or suppressor genes. If someone has these higher risk genes, such as— Most people have heard of BRCA1 and 2, although we have others, their risk can be as high as 40% to 60% if not even higher than that.
[00:04:18] So, when we say high risk, we’re talking everyone has the average, there are those that may not have these genetic family history genes that we see passed down from generation to generation, and for a higher risk such as BRCA1 and 2; they may have some breast changes, they may have some other things within them that will dictate their moderate risk, fifteen to 20%, and maybe we can offer specialized addition to their normal annual screening; and then, those who are in the highest risk, or the higher group, that would be the group that we may be considering things like preventative treatment and prophylactic, or removal of possible natural organs that, it has not yet developed cancer, but the risk is so high. One may want to look at that as a preventative step.
Adam: [00:05:05] Okay. Yeah. And that makes perfect sense. Thank you for giving me that information. So, are there some tools that are available to start to learn about family health history?
Robina: [00:05:15] Yes. So, the first two lie, I try to empower all women to first talk to your family. We don’t sit around normally at family gatherings, Thanksgiving and Christmas and New Year’s Eve because these are joyful occasions, and Bar Mitzvahs and births, and things of that sort. And when we really have the collective family together, we don’t take that opportunity and that time to ask questions about who has died, who was diagnosed with what in the family, what did grandma have, what did aunty die of, both mom and dad’s side. The misconception is, we should only ask questions about what happens on mom’s side. We get the genetic makeup from our mom and our dad.
[00:05:51] So, genes are passed down to us from both sides of the family. So, that first tool would be engaging a conversation with your family to understand who had what. If they had cancer, what age were they? It’s very important to understand, because as I alluded to earlier, the longer we live on this earth, we are exposed to God knows what kind of chemicals and things that can cause changes in ourselves. Some things we’ve identified, some things we haven’t. So, the longer that we’re here, we’re more exposed.
[00:06:20] When we see cancers, specifically things like breast and ovarian, in young women, women under forty, we start to ask our questions; “Okay, you haven’t been living long enough on this earth to be exposed to so much.” The average age is around sixty for Caucasian women, and around fifty-six for African American women. So we say, “Okay, if you’re thirty, or you’re twenty, and you have breast cancer,” the first thing we’re saying is “Okay, it’s not because you were here long enough; you are a woman, you have breasts, you have the first risk factor.” The second is age, live longer. You don’t have that. So, what else could be contributing? So you start to ask the questions in a family, “What cancer did so-and-so had?” Both mom and dad, and male and female. You can ask about uncle and male cousins and then your father. What age were they? Was it “Grandma had breast cancer and she died.” Okay. “Well, how old was she?” ”Oh, she was eighty-five.” Okay. That is the average risk cancer, that she lived to eighty-five; she had two risk factors, she was a woman with breasts, and she lived to eighty-five.
[00:07:18] Those are the things that we can’t change, but you want to know how old they were. Then, you want to know if there were multiple women within the same generation. So, if you say “If grandma had it, and then her sister had it, so my great aunt had it, and that her great aunt had it, and then her brother had it, and it’s not specifically just for breasts. What we know about hereditary cancers is that there are some cancers that I like to roll together, if you will. For example, breast and ovarian cancers. If we see in a family, or in a individual who has breast and ovarian cancer, we’re saying, “Okay, these are two cancers that usually on their own are separate, but if they come together; if we see them in a family, or there’s this unusual family history of these cancers that are— That my aunt had breast cancer and she was young, and then her sister had ovarian cancer and she was young, and then her brother had prostate cancer and he was young.
[00:08:06] These are the things that sparked an interest for us as physicians to say “There may be something in your family as to why you may have breast cancer, or have been diagnosed just recently, or your mere risk may be higher, that mammograms every one to two years, and clinical breast exams by a doctor every year may not be sufficient.” So, the first tool is engaging a conversation with family, asking the questions. After you do that, the second tool would be to use tools that kind of help you understand where your risk might be. So, let’s say you’ve done your first homework assignment. you used the first tool, you’ve asked the questions, you found out you have some people in the family with some cancers. You can go to specific websites such as— Susan G. Komen has a website; We can go to their family history tool that allows you to put in that same information that I just asked you to glean from your family.
[00:08:57] Who had what, was it on mom’s side, was it on dad side, first generation, second generation. What was it that they had? What was their age? This is kind of a rough informative, it’s not necessarily absolute. These tools are designed for everyone to go and get an idea “Should I be concerned?” because the next step, the next tool would be to then talk with your physician. There are physicians who specialize in hereditary cancer and genetics, they’re called geneticists, you don’t necessarily need to see them initially; you could talk to your primary doctor, your family doctor, your internist. There are tools that are out there for us physicians, there are models where we actually can dive into things such as, you’ve had any biopsies with any high-risk lesions, and whether or not you took hormone replacement therapy for a certain amount of years. So, there’s kind of like a tier system, and it’s very important for people to know that.
Adam [00:09:50] Right. So, it sounds like step one is talk to your family, step two is take that information and go to Komen’s website and look at the— It’s almost like a, like a risk calculator, right?
Robina: [00:10:01] It is, that’s exactly what it is.
Adam: [00:10:03] Plug that information in and see; Is there significant cause for concern? Then take those results to your physician; you said primary physician; internist, take those results to the physician—
Robina: [00:10:13] OB-GYN, any physicians that you see on a regular basis.
Adam: [00:10:18] And then have them sort of take it into their tool, which is more advanced than the tool that we would have access to, it’s sort of average nonmedical personnel, right?
Robina: [00:10:27] That’s correct, that’s actually correct, yes, yes, yes. And it’s very helpful; It’s very helpful because when you go in with your homework assignment, so you’ve gone through those two first steps, you’re going to have a better, informative, engaged conversation with your doctor, than if you just walk in and say, “Am I high risk?” And they’ll say, “Okay, so tell me about the family.” You’ll be like, “My grandmother had cancer.” “Okay, great. How old was she?” That’s not going to be a helpful conversation. So. the conversations that are very helpful and empowering are those when the patient comes in and they have questions that they are ready to ask, and the conversation is back and forth. It’s an interactive discussion instead of being a one-way conversation. Those are the best kinds. You’ll say, “I pulled my family and I took that information and I plugged it in, and this is the information that it gave me, and I’m ready to now talk with you about this information. What are your thoughts on it?” versus coming in and saying, “I want an MRI because I’m concerned I may be high risk.” And they’ll say, “Well, where your concern coming from?” “I don’t know. I saw it on the TV.”
Adam: [00:11:36] I love seeing this from your perspective as a doctor. I can tell that you’ve had these conversations, and that you’re very passionate about people that come in already prepared, already having done their homework, and they understand at least preliminarily what their risk factors are. And that seems very important to me.
Robina: [00:11:54] Exactly, it is; because misconceptions are unfortunately a big roadblock to being healthy. The person taking ownership themselves on doing what’s the responsible thing to do, which is to do your screening and see your doctor, do your annual checkups. What happens is, some people say, “Well, there’s no one in my family who has breast cancer, so I don’t need to ask. I don’t need your tool; Thank you very much, Dr. Smith. I don’t even need a mammogram.” Biggest myth. I started off this conversation by saying the two biggest risk factors for the average risk; that means every woman who is born. Every woman who is born, unless you have some kind of genetic anomaly, with the genetic makeup of breast development at puberty, and the hormones that come with it, and the hormonal changes, the cells in our breasts are sensitive to the hormones and the things that we go through through our lifetime. Our breasts are constantly changing, their hormone levels are constantly changing in our life until we hit menopause. Then after menopause, we go through a different set of changes, but we live our lives. So, I used to tell my patients, “Unless you have a fountain of youth and you’re not going to get older, and having breasts, yes, there are some things one can do about it, but we’re not going to talk about that here; but you were born a woman, right? So, you are born with the risk factor of breast cancer by having breasts naturally, and if you plan on living longer, you have that risk, regardless of who is in your family.”
Adam: [00:13:26] Even to get back to your original point earlier in this conversation, you said it’s a 9% to 12% risk factor; would you go to Vegas if you’re only going to win 9% to 12% of the time? The answer is, well, that’s kind of scary if you’re putting your money on the line, but when you flip that and say, “Well, it’s my life on the line,” and then it becomes, “Oh, well, that’s actually a pretty significant number.” When you’re talking double-digit risk related to your life, that’s a big deal.
Robina: [00:13:51] It is. And my analogy was not to diminish the importance or the seriousness of that small risk between 9% and 12%; The analogy is to say every woman has that risk. We have a great guideline for that; we know that getting your mammogram; when you do your clinical breast exams; when you yourself check your own breasts; just to know that as long as you adhere to the guideline that we’ve had for decades, for an average risk woman, even if, God forbid, cancer does develop, we catch them early enough that they’re curable. That’s the importance about the average risk; it’s that if you do your part, and we do our part, and if it happens, it can be a curable situation. There are more women survivors now than ever before, because of that.
Adam: [00:14:43] That’s right, yeah. I think that’s great, and it’s worth having those conversations, because every woman is at risk, and every woman needs to have those conversations. I love that message.
Robina: [00:14:52] That’s correct. And men as well; I don’t want to negate the men. So, 1% of men will develop breast cancer; it’s not as high as women; So, therefore, we don’t actually have guidelines for screening for men. Men do have a little bit of breast tissue, believe it or not, right behind the nipple and areola area, it’s the same, almost the same anatomical breast tissue as women, just that they don’t have the components that make milk, and they have very little amount of estrogen, but they do have some estrogen in their body that can stimulate those cells, and they are exposed to the same risk factors as we are. But it’s a little bit easier for men because a subtle change within that small amount of tissue is recognizable on an exam, or just when guys take a shower; or usually in my practice, most of the time it’s their significant other that says, “Hey, what is this? What is this lump?”
[00:15:42] So, men as well can also pass down; if there’s a genetic component to a risk factor, they can pass it down to their daughters, and they can pass it to their sons who can have daughters. So, don’t negate asking the male counterparts in the family as well, about breast cancer, prostate cancer; again, I talked about cancers that kind of run together. Prostate cancer is linked with the genetic mutation that has been linked with breast cancer, pancreatic cancer as well, colon cancer as well. So, we need to ask about all of these, to say who had what cancer; don’t just limit it to necessarily just breast, because if you just ask for breast, we might be missing women who had ovarian cancer, and women who had colon cancer very young. So, these cancers run in clusters, and they’re rare to see in multiple family trees. So, it was important to ask just who had what cancer, what age, what generation was it; and that’s the information that’s important for the first assignment, which is the first homework tool.
Adam: [00:16:47] That’s great. Well, Doctor Smith, this has been so great. I love your (inaudible 00:16:50), you can tell you have a passion for people and for your patients. I love that. One last, quick question. If someone is at higher risk, what do you recommend is their next step right now?
Robina: [00:17:03] So, if we’re assuming that they’ve had the conversation with their physician, and they’re high risk; what happens is, that physician, depending on their level of understanding of high risk screening, they’ll know what to do in terms of educating you and say, “Listen, your risk is high enough that it will be improved by your insurance company that we need to incorporate having MRIs as part of your annual screening.” So, you will still have your mammogram, maybe even have an ultrasound. And what it is, it’s really looking a little bit more closer, and a little bit more fine tooth comb for those risks who are higher than average. For an average risk woman who may not have extremely dense breasts— And that’s another topic we could talk about another day, breast density, and how that affects mammograms; but mammograms by far so far have been the best screening tool that we have, on an every year or every two years basis of just checking for signs to see if something’s there. Now, there are times when we might decide in the high risk, that based on breast density or some other things, maybe we’ll do a mammogram and then do an ultrasound. So, maybe we will (inaudible 00:18:14), in six months. You’ll do a mammogram at the beginning of the year, and an ultrasound at the end of the year, or something like that.
[00:18:19] So, the doctor themselves, depending on their level of understanding, may already have that kind of set up in their practice where they automatically do it, maybe they will refer you to a breast specialist. I, for example, for me, I had patients referred to me who did not have anything going on in the breast, but because it was identified they were high risk, they came to me so I can evaluate them, and then I incorporated them into my high-risk screening clinic. So, I had women come into me just for clinical breast exams every six months, just to have their mammogram and ultrasound reviewed by me, just to have their MRIs reviewed by me, to update the family history, to find out “Since the last time I saw you, has anybody else been diagnosed with cancer?” And they were in a high-risk screening program, so the doctors themselves would determine if you will stay with them for that, or you’ll be referred to a specialist, or you’ll be referred to a geneticist.
[00:19:05] The best thing at that point in time is to ask the doctor “What’s the plan?” Even as far as chemo preventative treatments, where we may either offer a medication to reduce one’s risk of developing cancer in the breast; It doesn’t make it zero, because remember, she’s a woman, and she’s getting older, so we can’t make it what it was after she was born; But we can reduce it. If they had their risk at 60%, if they take a particular medication or chemo preventative medication, that may reduce that sixty back down to a more reasonable, 15% or 20% range. Then there’s women who may be offered removal of their breast, let’s say for those who are extreme risk, or those who are at risk for ovarian cancer; removing the organs to themselves, because the risk is so high that that may be an option for them to reduce the risk as low as possible; but those are the kinds of conversations that one will have with a specialist.
Adam [00:20:01] Okay. wow. Dr. Smith, this was so, so great. I really, really appreciate your passion and your information. It’s really, really great. Thanks so much for joining me on the show.
Robina: [00:20:12] Thank you, Adam. This has been great. I look forward to possibly doing more with you and educating everyone, because this is really one of my passions.
Adam: [00:20:18] Yeah, we’ll definitely plan that. And for those that are listening, if you’re interested in becoming more involved in the fight against breast cancer, visit komen.org, connect with your local Susan G. Komen affiliate, or make sure to walk with us at an upcoming Susan G. Komen event in your area.
[00:20:38] Thanks for listening to Real Pink, a weekly podcast by Susan G. Komen. For more episodes, visit realpink.com.org; and for more on breast cancer, visit komen.org. Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter at @AJWalker, or on my blog, adamjwalker.com.
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