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How to know if you’re at high risk for breast cancer
Nina Vincoff, MD, explains what women need to know about breast cancer risk on the 20-Minute Health Talk podcast
While most breast cancers are found in women who are 50 years of age or over, about 1 in 10 diagnosed with breast cancer are under 45, and often their cancer is in a later stage when it’s discovered.
On this episode, Nina Vincoff, MD, clears up the confusion around mammogram guidelines. She says every woman should go through a risk assessment at a younger age to determine their risk — something most do not discover until their first mammogram.
For those at high risk, this can have deadly consequences. The chief of breast imaging at Northwell Health explains what average risk means, how it is calculated, who is at the highest risk and steps women can take before going to their doctor's office.
Podcast Transcript
Host: 00:42
Hello, and welcome to 20-Minute Health Talk. I'm David Reich-Hale. Dr. Vincoff, thank you for joining me.
Dr. Vincoff: 00:49
David, thank you so much for inviting me today.
Host: 00:51
Dr. Vincoff, let's begin by talking about the basics of breast cancer preventive care. What should every woman, no matter her age or risk know?
Dr. Vincoff: 01:01
The most important thing to know is that the guidelines that exist right now are confusing. And it's okay to be confused. But if you are an average risk woman, you should be having a mammogram every year starting at the age of 40. And the reason why we say that is because those are the guidelines that save the most lives.
There are a lot of guidelines out there, and they weigh different kinds of risks, and benefits differently. But for us here at Northwell and at the Cancer Institute, and at the Katz Institute, the thing that we weigh the most heavily is lives saved from breast cancer. So that's the most important thing for women to know, is if you want to save the most lives, its annual mammography starting at age 40.
Host: 01:42
But that's for the quote-unquote, "average woman."
Dr. Vincoff: 01:44
That's correct.
Host: 01:46
So how do you even know if you are that average risk?
Dr. Vincoff: 01:48
And therein lies the entire problem, is that every single one of these guidelines no matter how much they agree, or disagree with each other, they all have one piece of verbiage that's the same — they all say for average risk women. And the problem is that most women don't know what their risk is.
Here in our imaging center at Northwell, we actually do tell all of our patients based on the information that they give us what their risk is. But our patients don't come in until they're 40. So how does a 20-year-old woman or a 30-year-old woman know if she's average risk or not?
Host: 02:26
So how do you get them in there early?
Dr. Vincoff: 02:28
For me, that's the moonshot. That's what I'd like to see happen. I'd like to see every woman in their 20s. I have a 21-year-old and a 25-year-old daughter, and I would love for every woman, every one of their friends to be getting risk assessment, and when they're in their 20s. And the reason for that is because the high-risk screening guidelines are very different than the average risk screening guidelines.
So, if you're at elevated risk for breast cancer, you might need to have mammography starting at age 25 or 30. And you might need to have MRI starting at age 25. So, we need to be screening these women, and giving them risk assessment, and telling them which category they're in while they're still in their 20s.
Host: 03:06
Who is doing the screening?
Dr. Vincoff: 03:10
So right now, that burden is falling on people's primary care doctors. And it's really difficult because as you know, you go to see your primary care doctor whether it's an internist; or for many women their primary care doctor is their OB/GYN.
There's a lot to do in a 15 or 20-minute visit. And to take a full risk assessment during a 15 or 20-minute visit is almost impossible.
We'll talk about it later, but there's a lot that goes into risk and it's not a short conversation. I think in order to really succeed at doing this, we need to have people come to their visit with our doctor, having already done that homework, so that then when they get into the doctor's office, they know which risk category they're in, and then they can have the conversation about what they need to do next.
We're lucky because there are a lot of smart people that have put together risk calculators that ask all the important questions.
And that information is available, and that's homework that you can do outside of your doctor's office. And it's actually the best time to do that kind of work because in order to really do a good risk assessment, you need to ask a lot of questions.
You need to ask a lot of probing questions to people in your family. And you probably are going to need to take some time to sit down with those people, and say, "What did Aunt Sue die from? And who in our family has had cancer?" You may know a little bit, but you probably don't know enough to really know what your risk is.
Breast cancer risk calculator
Host: 04:32
What goes into a risk assessment?
Dr. Vincoff: 04:35
There is a lot of different ways you can do risk assessment. But basically, it starts with a series of questions. And depending on which calculator you're using the questions will be slightly different. But some things go into almost every risk calculator and family history is the single most important thing.
Beyond family history, though, depending on the calculator that you're using, the other things that might be included are going to be:
- Age
- Height
- Weight
- BMI
- Use of hormone therapy
- Radiation therapy to the chest
- Dense breast tissue
- Biopsies
- Precancerous conditions that required surgery
- Do you have any genes associated with breast cancer
And depending on which calculator you're using; they weigh those different factors differently. So, the one that we use in breast imaging is the one called Tyrer-Cusick Model Breast Cancer Risk Assessment. And the reason why we use that one is because that one goes back two generations of family history, whereas many just go back one generation. And it also includes enough factors like dense breast tissue so that we can identify the patients that would most benefit from MRI.
There are some risk calculators that are meant to identify women who would really benefit from genetic testing. And that's important, too. So, depending on who's doing your risk calculation, you might be using a calculator that's more geared towards, "Might you be somebody who has BRCA," or the one that we use in breast imaging which is geared more towards, "Might you be somebody who needs something more than mammography starting at age 40."
We can’t and shouldn't offer the highest level of imaging to every single person. And we can't and shouldn't offer genetic testing to every single person. So, one of the reasons why we want to do these risk assessments is to identify the people that are going to benefit from all this higher-level testing.
Host: 06:42
How many different types of risk assessments are there?
Dr. Vincoff: 06:45
There are so many. I think there is at least seven, or eight popular ones, and probably more beyond that.
Host: 06:50
But all of them are going to come pretty close to putting you into the bucket that you should be in?
Categories of breast cancer risk
Dr. Vincoff: 06:57
That's correct. There are really three buckets for us. So unfortunately for us, we know breast cancer affects one out of every eight women, so we're talking about 12.5 or so percent of women who are going to develop breast cancer. If you're in the category of 20 percent lifetime risk of developing breast cancer, that's what we consider high. And if you're in the 15 to 20 percent — those are intermediate — may benefit from additional testing.
But certainly, the people who are in that greater than 20% risk of developing breast cancer, those are the people we're trying to find because those are the people who are really going to benefit from more testing and earlier testing. There’re versions of almost all of these models available online.
Host: 07:44
Who is at most risk for breast cancer based on these various models and what have you seen?
Dr. Vincoff: 07:50
Everybody is at risk to some degree, but there are some people who are at risk for getting breast cancer when they're younger. They're, or having the more aggressive forms of breast cancer, the ones that we call triple-negative for carrying the BRCA gene. And we're learning that there are certain racial and ethnic groups that definitely are at higher risk than others.
Specifically, I think, we've really all come to understand over the course of the past few years that Black women in particular tend to develop breast cancer younger and more aggressive. And they die younger of breast cancer, and more often from breast cancer. So, we're trying to get that information out to Black women.
One of the problems that we've had in breast imaging is that the United States Preventive Services Task Force guidelines don't recommend screening until 50. And for Black women, even 40 might not be early enough. Many of them are following the old guidelines. And I really think those guidelines are not serving them well.
The other group in our community that we worry a lot about, we have a lot of women of Ashkenazi Jewish heritage in this area. And they're also at increased risk for the same kinds of things, for the very aggressive kinds of cancers, and for carrying the BRCA gene.
Host: 09:04
With Black women, how much of it may have to do with inequities in care, not speaking to doctors as often, and not having access to health care?
Dr. Vincoff: 09:13
Some of it has to do with that, but that doesn't fully explain why there are more of them that are developing cancer younger; and why they're dying of breast cancer younger. So absolutely, there's some access, but I think it's also about education. I don't think that we really understood, and I think even a lot of women's doctors don't understand that there is this inequity in risk itself, even if you take education and access out of the equation.
Host: 09:42
What percentage of breast cancers are in some way hereditary? And what percentage is random?
Dr. Vincoff: 09:53
We don't even actually know the answer to that question because there are so many genes that we're still finding out about. So, what we do know is that the vast majority of the women who have breast cancer don't have a gene that we've yet identified. So, the typical woman that we're finding, the one out of eight, the 12.5 percent, it's only a very small percentage of those people who actually have a known genetic mutation.
And that's actually why in breast imaging, while we're interested in identifying people who might have a genetic mutation, we're really interested in just identifying the people who are at high risk for reasons that we don't understand and getting those people into screening.
Risk factors for breast cancer
Host: 10:42
Who else is at risk beyond – you mentioned Ashkenazi Jewish women and Black women. You mentioned family history plays a factor.
Dr. Vincoff: 10:50
People with a family history for sure; and it's not just the people who have a family history of breast cancer. One of the questions in our risk assessment is, "Is there a history of ovarian cancer, and other kinds of cancers?"
If it turns out that you're in a family that has a lot of cancers, even if it doesn't have breast cancer, even if you don't know if someone in your family who has breast cancer, you're actually someone who should probably speak to a genetic counselor. Because you may have in your family a gene that so far has only expressed itself as ovarian cancer, melanoma, or brain cancer. And you may be at risk for those, but you may also be at risk for breast cancer.
Dense breast tissue — another risk factor
Host: 11:22
And then there's also, I suppose more risk for breast cancer for women who have more dense breasts?
Dr. Vincoff: 11:28
It's absolutely true. I think for a long time, we thought that dense breast tissue was just something that made mammograms harder to read. So just to back up; so what is dense breast tissue? Everybody's breast is very particular to them. It's like a fingerprint, and they have all different kinds of compositions. So, some people's breasts are almost entirely fatty tissue, and some people's breasts are what we call "dense." They're made up of fiber or glandular tissue. Not only are mammograms maybe not going to be enough, maybe won't be quite as sensitive for you.
You're also at risk for developing breast cancer more than a woman who has fatty breasts. And so, we need to get that education out there.
Alternative to mammogram
Host: 12:10
If a mammogram isn't good enough, what can you do?
Dr. Vincoff: 12:13
There are a lot of different choices of things that you can do. Ultrasound is a great additional test. So, we always talk about screening mammography as finding about five cancers for every 1,000 women that are screened. If you add ultrasound on top of that, you find another two. That doesn't sound like a lot, but we were finding five cancers per 1,000. You add another two, that's actually quite a bit more. But it's not the most sensitive.
MRI is the best. MRI will actually find anywhere between ten and 15 additional cancers per 1,000 women screened. It's the most sensitive test that we have. The only thing similar to it is a new technique that we actually have here at Northwell called contrast-enhanced mammography where we actually give you dye and combine the dye with mammography. And when we give you the intravenous dye with the mammography, you end up with a mammogram that's similar in performance to MRI.
Are there risks associated with breast cancer screening tests?
Host: 13:05
And with MRIs and ultrasounds, is there any extra risk in taking these tests annually?
Dr. Vincoff: 13:13
I think it's a really great question. People always talk about the risks and benefits of mammography. And it's something that we can debate. But the thing that I really think should be outside of debate is the risk of the radiation itself. Mammography is a very low radiation dose exam. In fact, it's safe for women who are pregnant. It's safe for women who are breastfeeding.
And there's no reason even to stop having your mammogram if you're pregnant or breastfeeding. We offer women shielding, but you actually don't even need the shielding because the dose is so low, and the scatter is so low. So, there's really, in terms of radiation risk, there's really no risk of mammography. There is no risk at all for radiation if you're having an ultrasound because those are sound waves.
And as you know, we of course use ultrasound on pregnant women. Ultrasound is completely safe. The same thing with MRI. MRI is using magnetic waves. So, there's no radiation in MRI. The way that we do MRI is we give you the injection of the contrast material, which is called gadolinium. And then the gadolinium actually is the thing that we use to find cancers in MRI.
There's some concern about having MRI every year for your entire life and having that gadolinium. And I think the jury is still out on this. There have been some studies that show that maybe gadolinium is accumulating inside your body, and maybe we don't need to give gadolinium every single year.
Maybe having an MRI every two to three years would be enough. The jury is still out on that, but I think MRI is a sensitive enough test. And the evidence that it's dangerous is very small. So at least based on what we know right now, the benefits definitely seem to outweigh the risks.
Are mammograms covered by insurance?
Host: 14:47
Dr. Vincoff, in the beginning of this conversation you had mentioned that a lot of this can be confusing. And that makes it worth talking about insurance for a moment because some women fear not having some of these screenings covered. And obviously, the out-of-pocket costs can be quite pricey.
Dr. Vincoff: 15:06
I'm really glad that we're bringing this up because this is really important for women to know. Northwell, obviously, we are here in New York. New York is actually a great place for breast cancer advocacy. We've had people who have fought for the rights of women, and your mammogram will actually get paid for if you have a New York insurer.
I don't mean a government insurer, but private insurance. If it's located here in New York — which is the vast majority of them — you will have your mammogram paid for annually starting at age 40. And in fact, you can actually have a baseline mammogram in your 30s, so that there is something to compare to when you start at 40.
And even better than that, if you have dense breast tissue, we have dense breasts notification here in New York. So, when you get your mammogram results, that letter that you get will tell you whether or not you have dense breasts. And if you do, you can have an ultrasound that will be paid for by your insurance.
And here, also in Northwell, we are telling you in your report whether you're high risk. And if you're in that higher than 20 percent lifetime risk for developing breast cancer, your insurance will pay for you to have an MRI, almost without exception.
Host: 16:09
Is there hope that what's happened in New York can be replicated nationally?
Dr. Vincoff: 16:13
I certainly hope so. There are really passionate advocates across this country, and they've been able to do amazing work. I think the breast density legislation is the best example of that. It's the majority now of states across the country that have density legislation, which actually requires women to be notified if they have dense breasts.
And similarly, there are advocates in every state of this country who are fighting for the rights of women to be educated, and to have access to screening tests. So, I think the answer is yes. We're very lucky to live in New York. There are a million reasons why I love living in New York. But the answer is yes. These fights are going on and successfully across this country every day.
Host: 16:57
If we could shift back to risk assessment, specifically, for a moment?
Dr. Vincoff: 17:00
Sure.
Host: 17:01
There is going to be the certain percentage of women who are going to come in as higher risk. How do you monitor them? Because, is at that point, the general practitioner, or does this study says, "Okay, you are higher risk." What happens next?
We're in the process of developing here at Northwell a high-risk clinic, which I think is going to provide that population the kind of support that they need."
Dr. Vincoff: 17:19
Yeah, I agree. So, it's a problem because they can come and have their imaging. We're pretty clear on what the imaging recommendations are. If you're at increased risk, if you're in that greater than 20 percent lifetime risk for developing breast cancer, our recommendations are that you start having screening with MRI at the age of 25.
But I think what you're alluding to here is really important. No, someone should be managing you. That probably can't be your primary care doctor or your OB/GYN. A lot of people will choose to have the person, sort of, overseeing their care to be a breast surgeon even though they've never had breast cancer, and they've never had surgery.
We're in the process of developing here at Northwell, a high-risk clinic, which I think is going to provide that population the kind of support that they need. What they really need is someone to make sure that they're staying on track with their screening, and then to help them with the next steps in case anything is found on those screening tests. And we're going to be providing more of that support — actually within the next year.
Right now, we offer navigation to any woman who is diagnosed with breast cancer in our system, or anybody who needs breast surgery. Our navigators take over and they make everything easier for you, help you make your appointment, help you know what kinds of appointments you need. But you're absolutely right, that the women who haven't had cancer yet, but are in that high-risk group, they need navigators, too.
And they need support. It's a lot, I think, especially for a young woman who has never thought about her own mortality, or having to take these kinds of preventative actions without somebody to help support her both physically, and psychologically.
Host: 18:55
It's also psychological, is where I was going to get to. It's extremely scary.
Dr. Vincoff: 18:59
Yeah.
Host: 19:00
I mean, the word cancer scares everybody. And for someone who doesn't have cancer yet to be told, "Hey, you don't have it, but you should worry about it for this reason," there is that sort of, natural pulling back.
Dr. Vincoff: 19:12
I agree. And I think while we manage cancer out of the Cancer Institute, I think what we're talking about right now is something that's more along the lines of wellness. Right? I think there's a lot to be afraid of when women think about breast cancer, right? I mean, there's, this month; I'm wearing pink, we're all wearing pink. There's so much awareness.
What we don't talk about enough is all the great, optimistic things. And not only that, what we haven't talked about at all is the treatment keeps getting better. We have so many options. We have personalized treatment now that's actually based on the genetic makeup of the cancer that you have. So, some people think there's been breast cancer in my family. And I know what that's about.
You don't because the breast cancers that we're diagnosing now we understand them so much better, and we can treat them so much better. And there's so much to be optimistic about. But you just have to be willing to take some control over your own life.
Host: 20:05
A lot of this is not happening yet. When a woman in her mid-20s is going to her annual physical this conversation doesn't necessarily take place. So how can a woman be her best advocate to make sure that this conversation does take place?
Dr. Vincoff: 20:22
I think you cannot walk into your doctor's office assuming that they're going to do all the work for you. So, I really think that you need to be an advocate for yourself. We're coming up to the holidays. We're all gonna be seeing our families at Thanksgiving and whatever other holidays that we celebrate.
And I think it's a really good time to try to collect that information. Really, only one person in the family needs to do it, but somebody needs to do it, and then share it with everybody. And then you can go online. You can look at these risk calculators. You can ask yourself these questions, and even try to do the calculation yourself.
And that way, when you walk into your 15- or 20-minute visit with your doctor, you're prepared to say, "I think I'm in this high-risk category. Maybe I need imaging," or "I think I might actually be at risk for carrying one of the breast cancer genes, could I go and see a genetic counselor, and see whether or not I would be appropriate for testing?" Taking the initial steps out of the office will allow you to have a much more much more productive conversation in the office.
Host: 21:22
Dr. Vincoff, thanks so much for joining.
Dr. Vincoff: 21:24
Absolutely. Thank you so much for having me. This was a pleasure. Let's do this some other time of the year that's not in October so we can remind people about breast cancer screening, maybe in March, or April, or something like that.
Host: 21:35
I think that's a deal.
Dr. Vincoff: 21:36
All right, it sounds good.
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