Tim: Direct from Roswell Park Cancer Institute here in Buffalo, New York it's Cancer Talk Live. Today we're talking about breast cancer, specifically high risk breast cancer. Over the course of the next hour we'll talk about what it means to be at high risk, who is at high risk, what they should do and what can be done.
I'm Tim Wenger and I'm happy to be here with such an incredible panel here from Roswell Park. The questions, for the most part, they're coming from you during this session. Over the past several weeks, the questions have been streaming into our system via roswellpark.org. And over the course of the next hour during our session here, you can chime in with a live question on Twitter using the hashtag #BCTalkLive. #BCTalkLive. I'll try to keep reminding you of that throughout our session here over the course of the next hour.
The answers of course won't come from me. They come from an esteemed panel that we've gathered here at Roswell Park. And we'll start over here on my right, and that is Dr. Jessica Young. Dr. Young, thank you for being here.
Dr. Young: Thanks for having us.
Tim: And you are a breast surgeon, also the Director of the Breast Cancer Risk Assessment and Prevention Program here at Roswell Park Cancer Institute. Thanks again. And by your side, Dr. Ermelinda Bonaccio. Dr. Bonaccio, thanks for being on the panel today.
Dr. Bonaccio: It's my pleasure, thank you.
Tim: Director of Mammography Center here at Roswell Park, also an assistant professor in the Department of Diagnostic Radiology here at Roswell Park. Thanks for your time. Over here on my left, Dr. Christine Ambrosone, professor of Oncology; Chair, Department of Cancer Prevention and Control at the Division of Cancer Prevention and Population Sciences. Lot of words, Dr. Ambrosone.
Dr. Ambrosone: Many. And a lot of work, too.
Tim: It is a lot of work, and a lot of advice that's going to come from you, and expertise. And right here closest to me, Dr. Nicoleta Voian, Assistant Professor of Oncology and the Director of Clinical Genetics Service in the Department of Medicine here at Roswell Park. Thank you for your time.
Dr. Voian: Thank you for having me.
Tim: There's a lot to get to. And when we opened this up to questions, the questions, they came. And I think that's no surprise to you at all. I thought what might be best is to start with kind of a generic term or comment from you on what it means to be at high risk for breast cancer. Dr. Young, I think we'll start with you.
Dr. Young: Sure. The main point that I want to emphasize today I think is that most people think that their risk comes from their family. And it does certainly come from the family, but a lot of it is also personal risk factors. So for example, two sisters in the same family may have slightly different risks because of their own personal things like how many children they've had or if they've had any breast biopsies in the past. And so you can't just make the assumption that it's just about family history. And that's important to realize when we talk about each person having their own personalized risk.
Tim: Dr. Voian?
Dr. Voian: From a genetics perspective, having a high risk for breast cancer means that you have a gene mutation in one of those genes that predispose you to an increased risk for breast cancer or having a strong family history of breast cancer on the same side of the family.
Tim: Dr. Ambrosone, some opening comments on high risk breast cancer.
Dr. Ambrosone: So, I'm an epidemiologist and our work is really at the population level, not the individual level. And we're trying to figure out the causes of breast cancer. So in large studies, thousands of patients and healthy people, we categorize high risk as those who have a family history or if their relatives were diagnosed at a young age. Of course this may be genetics, but it could also be shared risk factors or it may just be coincidence. So for real personal high risk assessment you really need to be looking at clinical genetics.
Tim: Dr. Bonaccio.
Dr. Bonaccio: So I am the breast imager here and it's important from our perspective to identify these women who are high risk for breast cancer because they do have choices. So often times what we will do in these very high risk women is start screening mammography at a younger age. And, in addition, we'll do what's called enhanced screening. Which means they'll probably have additional testing, such as a breast MRI, along with their annual mammogram.
Tim: There's so much information to get to. There's one thing that I did kind of pull out of my notes that I know that's close to your heart that you'd like to get out there and talk a little bit about the mammography service here at Roswell Park. And just to give some information I'm going to give out that phone number, and then if you have anything you want to say about the fact that you are now offering mammograms to the public. But anybody that would like some information about mammography and what there is to offer here at Roswell Park can call 877-ASK-RPCI, that's 877-275-7724. And also RoswellPark.org/breasthealth. RoswellPark.org/breasthealth. And mammography is something that is being offered here now.
Dr. Bonaccio: Yes. In the past we mostly targeted patients who are at high risk for breast cancer, the patient population we're talking about here today, as well as our own patients who have been diagnosed and treated for breast cancer at Roswell. But now we are offering screening mammography to the community, to average women. And look forward to expanding that even further as we move into the new Clinical Science building, which will have an expanded breast imaging center, which is hopefully in the spring of 2016.
Tim: All right. And that phone number we'll give out frequently over the course of the next hour. Just remember RoswellPark.org, All that information can be had there. I don't know if "confusion" is the right word when we talk about high risk breast cancer, but it seems like with a lot of the questions that came in via RoswellPark.org and via social media, and again that hashtag #BCTalkLive, #BCTalkLive, you can use that on Twitter for live questions. There seems to be a lot of confusion.
And I'll take one question here that came in, "I don't understand why I got breast cancer." Pretty simple question, but it's a big question. "I don't have a family history. I don't have any risks of cancers. How can this be?" Maybe, Dr. Ambrosone, you can tackle that one to start.
Dr. Ambrosone: Sure, sure. So breast cancer is a very complicated disease and the more we learn, the more complicated we understand it is. And when there are risk factors that we know of such as family history, which could be genetics or could be shared environment, young age at menarche, having no or few children or having your first child at a late age, late age at menopause, hormone replacement therapy, alcohol consumption, low physical activity. Those are all breast cancer risk factors, but they're only applicable to large populations. None of those can really be applicable to personal risk. And it's likely that there are many factors that may increase risk, some that may decrease risk. And then genetic factors and many other pathways that can also.
So it's a combination of many things, and guidelines about risk factors for breast cancer are general ones that we use for research. And then those that we feel are modifiable that people can act on, we try to get the word out. But none of that can really be applied to one's own personal risk.
Tim: And we got that question in so many different ways, that's why I led off with that question. One of you in the lead-up discussions that we had before coming here today to gather to try to address as many questions as we could individually to the people that have asked of us for a response today. One of you, and I think it might have been you, Dr. Bonaccio, said that high risk, huge concern obviously and we need to know more about it. But most women that get breast cancer weren't at high risk, right?
Dr. Bonaccio: Correct. We were talking about this before, that our biggest risk for getting breast cancer is being a woman. And I think it's so important to have these conversations so that we identify high risk patients and they receive the enhanced screening or the different options that they have. But it's also important to just keep in mind that an average-risk woman still needs to have an annual mammogram and be screened for breast cancer.
Tim: All right. Let's jump in to one more question that came in from the audience leading up to our session today, "How do I know if I should have genetic testing to see if I carry a gene mutation associated with an increased risk for breast cancer?" Dr. Voian, I think that probably falls in your area of expertise.
Dr. Voian: Sure. So definitely looking in your personal history or family history, everybody who had breast cancer at an age less than 45 would benefit of genetic testing even without having a family history. Male with breast cancer having a family history of breast, ovarian, pancreatic or prostate cancer. Being of Ashkenazi Jewish and having a family history of breast, ovarian or pancreatic cancer. Having multiple family members on the same side of the family with breast cancer or breast, prostate, pancreatic cancer or ovarian cancer. Ovarian cancer by itself, everybody who was diagnosed with ovarian cancer should have a referral for genetic counseling and genetic testing. Having family history of breast sarcomas or other cancers would also be a red flag and would trigger a referral for genetics.
So I would say those would be the most common red flags to initiate a referral for genetic counseling.
Tim: All right, thank you. And one of our live questions coming in via Twitter and using that hashtag #BCTalkLive is, "Do you do screening breast MRIs for those who are BRCA2-positive when your GYN is not an RPCI physician?" Dr. Bonaccio, I'm looking right at you.
Dr. Bonaccio: In general absolutely, we do do screening breast MRIs in women who are BRCA-positive. That is one of the patient populations where having a screening breast MRI is shown to increase our ability to find cancers, small cancers in early stage when they are treatable. As far as specifically, we typically do breast MRIs mostly for our patients who are part of the high risk screening program and as part of our multidisciplinary approach to high risk screening.
We haven't really been doing that for the community as a test for patients who are known BRCA carriers but are not part of our high risk screening program. But I will certainly, now that I've gotten this question, sort of take a look at our procedures and policies and I think the best way probably for us to get back to her is through ASK RPCI, through a question through our . . .
Tim: Okay. Well, the question came in via Twitter and we'll be able to follow back with her and let her know that her concerns will be addressed. Go ahead, Dr. Young.
Dr. Young: I think it's also important to just emphasize that women who have BRCA1 or 2 should have a clinical breast exam every six months. So it's not just the screening with the MRIs, but also MRIs and mammograms yearly, but having the clinical breast exam is also really important.
Dr. Bonaccio: And that's part of why I really love being part of the multidisciplinary program in our high risk screening assessment and prevention program, because we all work together and make sure these patients are getting the appropriate testing and clinical breast exam and then any trials that are available that they can participate in. So that sort of has been our focus in that program at this point.
Tim: Well, we know we hit on a topic that there's a lot of interest. We really got overwhelmed with questions and we sifted through them. A lot of the questions were repetitive, and that's a good thing. We're able to address multiple questions with one. But they are sometimes very specific. So just to understand that as the questions do get addressed today, we'll try to do it as specifically as we can based on the information that the experts and the doctors have here on the stage.
Let's dive right in to one that is somewhat specific. This listener/viewer says, "My mother died of breast cancer at age 66. I have a mammogram annually and do self-breast exams. Is there anything else I can do?" Dr. Young?
Dr. Young: Just having one family member who had breast cancer at what I'm assuming is a post-menopausal age, it does increase your risk of breast cancer a little bit. But it probably doesn't put you into a high risk category, per se. There are some things that you can do. If you have other personal risk factors, you may fall into the category where you might need enhanced screening. But even without enhanced screening there are certainly lifestyle factors and things that you can help to reduce your risk without having to take any medications or do anything else.
Along the lines of things that Dr. Ambrosone already mentioned, good things to keep in mind are really not smoking, which is great for so many reasons, really very little to almost no alcohol consumption, trying to maintain an ideal body weight. We know that women who have more body fat on them really are at a little bit of a high risk for breast cancer. And then just plain old physical activity every day is always a good thing to advocate for. And we do know that that can decrease your risk of breast cancer independent of actually what size you actually are.
And so those are all good things to keep in mind for helping to decrease your risk for breast cancer. Of course just remembering to get your annual screening mammograms is really important because I know that women get busy taking care of their families and doing other things and a year or two can even fall by without getting one. So just remembering to be really consistent about that is important, as well.
Tim: Yeah. Go ahead.
Dr. Ambrosone: I might also add a diet high in fruits and vegetables, probably low in meat, is good for reducing risk of just about everything. And the data are pretty good for breast cancer. And there's pretty good data, as well, for consumption of cruciferous vegetables, such as broccoli, cabbage, Brussels sprouts, cauliflower, kale, as possibly reducing risk.
Dr. Young: We actually have a study open for that, if anyone's interested, for women who actually are already diagnosed with cancer. But we're looking at broccoli sprout extract as a possible way to help treat breast cancer. So it kind of goes along with that.
Tim: I was just going to jump in. As the only guy on the stage, what you said about women being so busy, whether they're moms or wives, whatever, their lives are extremely busy and it really can be sometimes you're the last person you worry about, is yourselves. So I think what Dr. Young says has nothing to do with being an expert. But really just understanding if you're not there, everybody that you're trying to be busy for will suffer in the end.
Dr. Young: Absolutely.
Tim: It's really a great point. And Dr. Ambrosone, through the years we've had conversations about many aspects of cancer care, treatment, etc., and it does seem like a lot of our conversation circles back to diet, exercise, some alcohol consumption, tobacco. I think there's probably more you can expound on what you offer there. You didn't talk much about tobacco or alcohol with regard to . . .
Dr. Ambrosone: Right. The data with smoking are pretty complicated because for years it didn't look as though smoking increased risk of breast cancer. But if you want to give mammary tumors to a mouse or a rat, there are a lot of carcinogens you can give and they'll get those breast tumors. They're also...you can see that tobacco smoke carcinogens have interacted with breast DNA. And there were studies looking at fluid from nipple aspirate had high levels of tobacco metabolites.
But epidemiology is very difficult because you're looking at hundreds of thousands of people and comparing and you're using questionnaire data to get good measures. But recently there was a large panel and they did conclude that smoking increased risk of breast cancer. And particularly if you have kind of common differences that make you less able to get rid of those tobacco smoke carcinogens. Physical activity is a clear factor that can reduce risk of breast cancer. Everybody should take it pretty seriously because the data are very strong for physical activity. Alcohol consumption, we hate to hear it. But the data show that even one glass of wine or alcohol a day increases risk somewhat. So people who are really concerned about their risk should take that seriously.
Tim: Okay. And our hashtag is pretty active as we continue our discussion here live from Roswell Park. #BCTalkLive, #BCTalkLive on the screen behind me, as well. So if you do have a question on Twitter, go for it and send it our way and we'll get it to the experts. I was going to wait a little longer to get to this one, you all know what I'm going to do now, because the question came from Twitter. "Can you talk about this week's new ACS, American Cancer Society, recommendations on mammograms?" And it's something that's been talked about a great deal in the media since it was released. And I think just about all of you have an opinion on it. Dr. Bonaccio, I think I'm going to start with you there.
Dr. Bonaccio: Sure. So I think the most important thing to start off is that this is regarding average-risk women, so we're a bit off topic here. This does not really apply to the high risk screening population. But yes, the American Cancer Society published new guidelines for screening average-risk women this Tuesday. Which were meant to clarify this conversation, which we have continued to have in this controversy, we continue to have about what is the best age to start screening mammography, but in reality has added to the confusion.
Some areas of agreement amongst the American Cancer Society and some of the other recommending bodies, including the one that Roswell participated in, which is the National Comprehensive Cancer Network. Our guidelines have not changed. We still recommend screening mammography at age 40. But where we can agree is American Cancer Society actually in their paper confirms that mammography lowers the risk of dying from breast cancer. And maximum benefit of that decreased risk of dying from breast cancer will happen if women start screening beginning at age 40 and screen annually. They don't argue against that. All the trials, both observational and randomized control trials, support that.
But the approach they took was how is it best for us to balance this known benefit with the harms of mammography. And specifically that the harms that they refer to in this publication is a false positive mammogram, which either you need to return for additional mammogram pictures or ultrasound and most of those actually turn out to be fine, or you even need a biopsy and that turns out to be fine. This is referred to as a false positive mammogram.
And their argument, their recommendations are based on the fact that they feel that the maximum benefit of mammography versus the harm, this false positive study, false positive mammogram, is starting at age 45. But they also recommend that women beginning at age 40 should have the opportunity to begin screening. Because you will have a decreased risk of dying from breast cancer if you start at age 40, but this should be a more informed decision. So it's confusing.
I think the good news is it's supporting that mammograms save lives and it's just trying to refine it in a way. I think my disagreement with it is the harm of a false positive mammogram, in my mind and the mind of the NCCN, is far outweighed by the benefit of having the decreased risk of dying from breast cancer. So myself, the NCCN, are not changing our guidelines. I still recommend annual screening mammography for average-risk women at age 40.
Tim: And that's the key, average risk. What you just said, to me, is a very key point. Those guidelines came out for the average risk. And specifically today, we're talking to a lot of people who have submitted questions that either have determined that they're at high risk, have been determined that they're at high risk, or think they might be at high risk. And those guidelines really aren't for them.
Dr. Bonaccio: Correct. They're not. Because often in that patient population, as we spoke to earlier, we may start screening even younger than 40, depending on their family history or if they are BRCA mutation, and do additional testing such as breast MRI.
Tim: Anybody else on the panel have comments or concerns over the ACS guidelines that came out this week or want follow-up comments on that at all? Dr. Young, looks like you're . . .
Dr. Young: Well, I think a lot of times when you're looking at guidelines, they're trying to look at the cost to society as a whole as opposed to the particular person. So when they're talking about bringing people back for extra mammograms and bringing them back for extra biopsies, it certainly causes a lot of...it can cause a lot of psychological harm to the person, being so anxious about it. But they're also trying to calculate, in general, the cost to society of having to have all these false tests done, which do cost more money than just having a regular mammogram.
So I think they're just trying to weigh the risks and the benefits overall. But they really did not argue against having what we recommend as the standard now at age 40 or stopping it earlier. They're just suggesting it as a possibility, trying to find groups where maybe false positives are a little bit higher or where they may or may not benefit quite as much. But they're kind of looking at it from a completely different perspective and I think it's important to keep that in mind. That's their job, but they're not really looking at each individual person, I don't think, as much.
Dr. Bonaccio: And there's some good studies showing that women who've had a false positive mammogram, although it is a very anxious time while they're awaiting results, that there are no long-term effects and are very happy to return for their annual screening mammogram after that.
Dr. Ambrosone: This brings to my mind it's the same issue as talking about risk factors for breast cancer. That, on a population level, we can talk about things that cause breast cancer, reduce risk. But it's not necessarily true on an individual level. And years ago when these guidelines came out, I skipped a couple of years of getting a mammogram. And when I went he said, "Why haven't you been here?" And I said, "Well, the guidelines say..." And he said the same thing, that this is cost benefit for society. And what if two years ago you developed a mass, would you want it diagnosed? Or would you be worrying about... So now I get my mammograms every year.
Tim: I think there's...we live in a society where we want definitive answers, and the guidelines are good to get us talking about it. But obviously with the input of professionals like you, and everybody should be listening to their medical professionals when it comes to breast cancer, and certainly if they're at high risk.
Speaking of which, a lot has been brought up here. If you have any concerns about yourself or a loved one who might be at a higher risk level or just needs an assessment of their risk level with regard to breast cancer, you can always call Roswell Park. And you can do so toll-free at 877-ASK-RPCI, that is 877-275-7724. If you prefer to go online, RoswellPark.org/breastcancerrisk. RosswellPark.org/breastcancerrisk. It's a great resource and all of that information is readily available to you.
Let's jump to one of the questions that was pre-submitted to us. And, Dr. Voian, I think this falls in your immediate area of expertise. "If you were to test positive for the gene, how could this impact your ability to get insurance, for example health insurance, life insurance?"
Dr. Voian: So for most New York State residents there are federal laws and state laws in place to protect against discrimination in regards of employment and health insurance. Those laws, however, do not cover life insurance, long-term care and disability. But if the person have them in place, they could not reject them after they have the test.
Tim: Okay. And this one from our audience, too, kind of jumps back to Dr. Bonaccio, I think. "I don't have a family history of breast cancer," this writer says. "Do I still need to have a yearly mammogram?" I think we just...we kind of edged into that discussion, but I think it deserves some emphasis from you.
Dr. Bonaccio: Yeah. I think we talked about this a little bit before, too, that it's important to focus on this group of patients who are at high risk for breast cancer. But I would not at all want the take-home message to mean if I'm not at high risk, I don't need an annual mammogram. So yes. If you don't have a family history of breast cancer and are a woman, you still need your annual mammogram.
Dr. Ambrosone: On a population level, about 15% of women with breast cancer have a family history. So that leaves 85% of those women that did not have a family history and got breast cancer.
Tim: Interesting note, thank you. Another question that is coming from the audience before our session today, "Does a breast reduction for large breasted women with a family history of breast cancer reduce the chance of breast cancer if there is less breast for the cancer to potentially grow?" Dr. Young.
Dr. Young: That is a great question, whoever was writing that is really thinking outside the box. But there's really not any evidence to show that a reduction can reduce your risk of breast cancer. I would say that if you're having a reduction, to make sure that your specimens are tested to see if there's any cancer cells in them. Because every once in a while we will find either cancer cells or maybe atypical cells which are important to finding your own risk level. If you have atypical cells, it does bring your risk up. So it's always good for that to be tested thoroughly.
Tim: A follow-up question now that just came in off of Twitter using that hashtag #BCTalkLive, "I was told I have dense breasts. Does that put me at high risk and should I be screened differently?" And I think maybe both of you might have something to say about that.
Dr. Bonaccio: Breast density is important for two reasons. One, women who have dense breasts are more likely to have a false negative mammogram. Meaning that there is actually a breast cancer there, but we just can't see it on the mammogram. Dense breast tissue actually refers to what your breasts look like mammographically. You can't tell if you have dense breasts by how your breasts feel. And cancers are white and dense breast tissue is white, so that is why it's harder to find a breast cancer. Not impossible, but harder to find a breast cancer if you have dense breast tissue. So that's the first issue with having dense breast tissue.
There is good data to support also that having dense breast tissue in and of itself means that you are at increased risk for breast cancer. Doesn't alone put you in this high risk category, but it's one of the factors that we consider. So in New York State, and there are several other states, we are required to inform you of your breast density when you have a mammogram. So you'll be told when you have a mammogram if you have dense breasts.
And we give patients who have dense breasts some information regarding what that means about their risk and about the increased possibility of having a false negative mammogram. And then hope you will then have a conversation with your physician about whether additional screening is appropriate, meaning either a breast ultrasound or possibly a breast MRI if you have other risk factors. But that comes with its own set of issues, in that some of these, especially breast ultrasound, does have a very high false positive rate. And that's why we want these patients to have a conversation with their doctors before we do additional testing.
Tim: All right. That is Dr. Ermelinda Bonaccio and we are live from Roswell Park Cancer Institute here in Buffalo, New York. It is Cancer Talk Live. We're talking about high risk breast cancer. Dr. Bonaccio joined by Dr. Jessica Young here at Roswell Park. And over on this side, we've got Dr. Christine Ambrosone on the outside, and on the inside closest me is Dr. Nicoleta Voian. And the questions, they continue. You can use the hashtag on Twitter if you choose to, as those questions continue to come in at #BCTalkLive. It's on the screen right here, as well as a reminder.
Genetic testing, big question. It came in in many different ways. "How do I know if I should have genetic testing to see if I carry a gene mutation associated with an increased risk of breast cancer?" Dr. Voian, I think that's you.
Dr. Voian: I think I would answer to this question. So if your personal history or family history shows any of these red flags: either being diagnosed with breast cancer on the age of 45 or between 45 and 50 and an additional family member or close relative with breast cancer; having a family history of breast cancer in multiple or close relatives on the same side of the family; having a family history on the same side of the family with breast, ovarian, pancreatic, prostate cancer; being of Ashkenazi Jewish ancestry and having family history of breast cancer, ovarian cancer or pancreatic cancer; having been diagnosed with breast cancer triple-negative under age of 60 or having a close relative with such; and having history of breast cancer sarcomas, endometrial cancer or other cancers on the same side of the family.
Or if there are any concerns, please call 1-877-ASK-RPCI if you have concerns about your family history or personal history and if that would qualify you for having genetic counseling, with or without genetic testing.
Tim: Okay. And that phone number is 877-ASK-RPCI. And the number's 877-275-7724. I almost said that wrong. 7724. We've been talking an awful lot up here about high risk and we've talked about what makes a person high risk. "What does the high risk program entail and how do I find out if I'm eligible?"
Dr. Young: You can, again, go to 1-877-ASK-RPCI or you can go on the Roswell Park website, I think it's RoswellPark.org/breasthealth. And there are some tools there, or you can connect with a live person to be asked some questions so we can sort of evaluate you about whether you would be eligible for the high risk program or not.
And really what the high risk program is aiming to do is to go through your personal factors and your risk factors with your family history and to try to give you a better estimate about what your risk for breast cancer is. And then a lot of it is just about information about different ways that you can modify your risk factors, other drugs that you may or you may not be able to take to help decrease your risk. We talk about whether you're eligible for enhanced screening and also for genetics.
I think an important point is that just because you may not be eligible for genetics does not mean that you're just not high risk at all. Again, those personal risk factors are important to making up your risk, as well. And I think one thing we haven't talked about a huge amount is if you had previous biopsies which have showed any sort of atypical cells or maybe you've had a biopsy that shows something like LCIS, then those are going to put you just personally at a higher risk without even any real family history coming into play there.
And so I think everyone sort of has an idea of what their risk level is and I think it's important if you have any questions to get more information about that. Some people grossly underestimate their risk. Some people grossly overestimate their risk. And our program is a lot about information for you to be able to understand your risk level and then what else can be done about it.
Tim: Another question coming in live from the audience, "I don't have any insurance and haven't worked for over four years. I'm 55 years of age and haven't had a mammogram in five years. What do I do?" Dr. Bonaccio.
Dr. Bonaccio: So there's a couple options. New York State Cancer Health Services Program will cover mammograms for uninsured and underinsured women. And will not only cover the mammogram, but will also, if it is abnormal, continue to cover any additional imaging you need or even a biopsy to make a diagnosis that it's benign or make a diagnosis of cancer. So I would definitely encourage you to still try to get a mammogram, it is covered by this program. It's a wonderful program that we have in New York State. And you basically could then have your mammogram anywhere, it's not specific to any one site. But that would be the best way to get an annual mammogram.
Tim: Great information for that person and I'm sure a lot others out there. Specific question coming in from our audience, and this was submitted prior to the forum today off of RoswellPark.org. Listen closely because this one's got a lot of details in it. "My mom, aunt, grandma and great-grandma have all been diagnosed with breast cancer. My mom and her sisters have all been tested for the BRCA and BRCA2 and it came out negative. Is there a different genetic connection or just a coincidence? And is there anything I could do to prevent myself in advance from also being affected?" Dr. Voian, you want to tackle this one?
Dr. Voian: Yeah. So I will start with it, then probably after that Jessica, Dr. Young, can talk about enhanced screenings. So definitely beside BRCA1 and BRCA2 gene mutations, there are other mutations in different genes that would predispose women to breast cancer. And based on that family history, we may need additional information if you may qualify for additional testing. And I think that it would be worthwhile doing. Please call 1-877-ASK-RPCI and we can schedule you for our genetic consultation.
And we have families where there is a different gene mutation, like, for example, Li-Fraumeni. We did DP53 or CHEK2. So there are high-penetrant genes and there are moderate-penetrant genes. And the level of the risk is, as they are called, moderate-penetrant gene will predispose woman to cancer in a range. So the lifetime risk for breast cancer will be somewhere between 20% and 50%. And with a high-penetrant gene, having a mutation of one of those genes, the woman would have an increased risk and the risk will be somewhere between 50% and probably towards 85%.
And BRCA1 and BRCA2 are most common genes known. Angelina Jolie is a very good advocate in this regards. And with those mutations the risk is very high, but we have to consider the possibility of other genes. And if genetic testing is performed, there's no other gene mutation, definitely even then you need to consider enhanced screening. And Dr. Young and Dr. Bonaccio can mention about enhanced screening.
Dr. Young: Well, one thing, I think also just to mention, is that genetics is like this huge area that's been booming over the past five years or so, I would say.
Dr. Voian: Correct.
Dr. Young: I think five years ago we would say only BRCA1 and 2 to be tested, but now there are so many more genes and different ways to test for them. But also even if your family tests negative now, I think they're encouraged to check back yearly to see if there have been advancements in genetics testing. But in five years there may be a whole new set of genetic mutations that we're able to test for now that maybe we just haven't found the one that is affecting your family.
But regardless of that, with so many family members having had breast cancer, we would put you into a model to sort of determine what your personal risk level is. And you may be eligible for enhanced screening, which I think we've talked a little bit about before already this hour. But if you do meet a certain risk level, then you may be eligible for having MRIs for screening as well as mammograms yearly. And also possibly eligible for medications that may reduce your risk of breast cancer, as well. So that would be a very personal...we'd have to evaluate you personally for that.
Dr. Bonaccio: And one detail, we've talked about enhanced screening including breast MRI, but the other piece of it is that we'll sometimes start screening at a younger age. So if those family members all had breast cancer in their 30s, premenopausal breast cancer, we’ll typically start about ten years prior to the youngest age of breast cancer. But not less than 25 or 30 because at that point we really want to minimize any radiation, even this very low dose mammogram, to the breast. So that's the other piece: having the breast MRI, but potentially starting your screening mammogram at a younger age.
Dr. Ambrosone: If I could add something. African-American women are known to be diagnosed with breast cancer at a younger age and have more aggressive cancers. And some who have been tested have large numbers of family members who have had breast cancer and do not have mutations in those genes. And this is an area of very active research, trying to identify the genetic variants. The genetic structure in the African-Americans is different from Caucasians because a much, much longer history over time in Africa, and so the genomics are much more complicated.
So if you do have a strong family history and you test negative, just like they've been talking about, really careful screening and genetic counseling and advice to monitor early detection of breast cancer.
Tim: And really to play to the area where you come from, it's really important that women know, that all of us know, but in this specific case to understand what our risks are, what our family history is, where we come from. All of those different things come into play, right? In whether we should be considering genetic testing.
Dr. Ambrosone: Yes, yes. And there's quite a bit of conversation in the world of breast cancer researchers studying breast cancer in African-American women. Because the incidence of breast cancer occurring in young women is quite high. And the guidelines saying start screening at age 40, start screening at age 45 may actually be too late for African-Americans. Although you may want to address that. I guess among younger women it's harder to detect tumors with . . .
Dr. Bonaccio: Well, it can be harder to detect. Also, because the incidence in general is lower, you have an increased risk of that false positive, too. So the younger you start screening, the more likely in your lifetime you'll have a false positive study, or more than one false positive study. And unfortunately most of the screening trials did not have populations of African-American women that were large enough to actually be able to analyze the data, so we're in an area where we just don't have a lot of data.
Tim: But "knowledge is power" is what I'm hearing. The more you know about your personal situation and your history, your family history, determines how many of these questions apply directly to you. And again, we'll continue to give out that information with the phone number, with the website, if you have any questions or concerns following this webinar here live from Roswell Park.
Another question that was submitted to us prior to the session today, "I want to know more about the lifetime risk of breast cancer in the other breast after successful surgery and treatment." It's an interesting question. A lot of women have been treated for cancer, they've had a mastectomy. Dr. Young?
Dr. Young: Well, whether they've had mastectomy or not, a lot of women, I think, especially these days are considering having both breasts off when they find out that they have even a very small cancer. And really there is a risk for breast cancer in the opposite breast if you don't have a mutation. So for women who don't have any known mutations in their family, the risk is probably somewhere around 5% to 10% over the lifetime. It's going to be a little bit more for women who are younger just because they have a longer life to continue to live. So they have more time, I suppose, to develop another breast cancer.
But it's really fairly low in general, and that's why there's not a specific recommendation to have both breasts removed when you do develop breast cancer the first time. That is a little different for women who have mutations. So in general for a contralateral or opposite breast cancer in a woman who has a known mutation, especially with BRCA, the risk level is probably more around 25% to 30%. So those women are at a much higher risk and may want to consider having their opposite breast removed prophylactically or without any real issues in it at that time.
Tim: This next question is a long question, but I think it bears a pretty important point. And, Dr. Voian, listen closely because I think this one really targets your area of expertise, not to put you on the spot. "Should I get genetic testing?" That's the basic question. Here's the detail. "My mother had breast cancer at age 60, had a mastectomy and chemo, died at age 66 in 1986. Her oldest sister had breast cancer age 45, had a mastectomy, died at age 47 in 1965. Another sister had ovarian cancer at age 53, died at age 56 in 1983. And another sister, bladder cancer, and just recently died at the age of 86. Only one sister did not have cancer."
The writer is 53 years old, has been getting annual Pap tests and mammograms since the age of 35. Does not have any sisters and two older brothers. I'll go back to the first part of the question, which is the question, "Should I get genetic testing?"
Dr. Voian: So definitely, based on your family history, you are appropriate for genetic counseling, and genetic testing will be offered to you. And the extent of the genetic testing will be established at the time of your consultation. And you definitely need, beside mammograms, you would need enhanced screening even if your genetic testing will come back negative because of the strong family history of breast cancer.
We do not have any data in regards of family history of breast cancer in women and having offspring, males, so there's no guidelines for your brothers. If they will also have genetic testing, they will come back negative. We don't have recommendations in these regards. But definitely you have a very strong family history of breast and ovarian cancer. And definitely you are very appropriate.
Please call 1-877-ASK-RPCI. That's a self-referral and the triage team will take care of you.
Tim: There was a lot of information there, but I think it really . . .
Dr. Voian: Yes. It's a very strong family history. And definitely it's great that you have called.
Tim: All right. Thank you for that, Dr. Voian. Another specific question that came in to us prior to the broadcast today, "I'm a 26-year-old female and the only occurrence of breast cancer in my family was my paternal grandmother. What steps should I take to protect myself?" Dr. Young, you want to tackle that one?
Dr. Young: If you've only had one family member, and it does depend on how old your paternal grandmother was when she developed breast cancer. But having just one family member who, in this case, is actually a second-degree relative, not even a first-degree relative, you're probably at a slightly higher risk than the average population, but probably not high enough to need enhanced screening or anything like that.
Given that you're so young at 26, I would still say, unless your grandmother had an earlier breast cancer, really just to start screening at age 40. But certainly doing self-breast exams and getting a clinical breast exam from your gynecologist or your primary care physician is important. And if they feel anything, of course to go get it checked out.
Tim: Remember at the beginning I mentioned that word "concern" and "confusion"? And this question, I think, really addresses it. "Cancer runs in my family. Both my parents and my mom's side it's rampant. My mom passed from a two-year brutal battle with triple-negative cancer. I got a genetic test that was negative. What should I do now? I'd rather get a mastectomy than risk cancer. My breasts are dense, I have breast pain lately. I just think I'm bound to get cancer." What would you say to that woman?
Dr. Bonaccio: Well, again, we would need more information to see if genetic testing was appropriate. And the age of her relatives having gotten the breast cancer would determine at what age we start screening mammography. At the minimum, she needs to be having an annual mammogram starting at age 40. We have found the technology with mammography has gotten better. We know that a digital mammogram is better for women with dense breast tissue. And now we have 3D mammography, which we've recently implemented here at Roswell, also. So that's probably a better mammogram with someone who has dense breast tissue.
But in addition, she would be another candidate who would be good to have some sort of consultation with the high risk program. Because it is possible that breast MRI might be an appropriate test for her to have in an annual basis in addition to her mammogram. The breast MRI doesn't replace the mammogram. It's an additional test that we have found that can find breast cancers, very small breast cancers that are not seen on mammogram.
Tim: All right. And this next question, you mentioned 3D mammography and I think this question goes to that, as well. "I had a lumpectomy in 2013, also radiation at Roswell Park. I'm now doing my post-op management with mammograms every six months because my breasts are dense. Should my mammograms be done on the 3D or MRI? I'm afraid that something might be missed due to my dense breast tissue. Advise." I think that goes back to you, Dr. Bonaccio.
Dr. Bonaccio: So yeah, we're moving towards...typically we only do a mammography every six months the first year after treatment, and then you can go to annual screening mammography. Definitely if you have dense breast tissue, I think, and this would probably occur without you asking for it, but that you should have your annual mammogram using the 3D technology.
Basically it's a mammogram, it'll feel very similar to having a mammogram. You're still in compression, unfortunately. Most women were hoping that that would be avoided, but you're still in compression. But it takes a series of images so that we actually then look at slices within the breast and decreases the issue which is particularly true in women with dense breast tissue of overlapping tissue obscuring a cancer.
And there have been some very good multi-centered trials and large trials showing that it decreases your risk of having to come back for additional imaging and also finds more cancers than your standard mammogram, especially...we were hopeful that it'd be especially useful in women with dense breast tissue. But again, with the prior history of breast cancer and also the dense breasts, it would be important to get even more information. If she does have a family history, especially a family history of premenopausal breast cancers or any other risk factors, we would consider also adding breast MRI.
Tim: This next question I think we've addressed in pieces throughout the first 45 minutes or so here. But I think they're looking for a real succinct answer and I think it's a good idea. "What happens once someone is determined to be high risk for breast cancer? Does anything happen in addition to them getting their regular screening mammogram once a year? Is it recommended that they take preventative measures once they are deemed high risk?" You've been deemed high risk, what happens?
Dr. Young: Well, I guess I could certainly address that question. So really if you've already been deemed to be high risk, at least what we do through the program is that we go through different options to help you manage your risk. And those options may change over time, as well. So certainly if you are high risk enough, you may get the enhanced screening with MRIs. And as we've mentioned, I think it's important to note that it's an MRI and a mammogram every year, they don't replace each other. And so that would be one of the first things that we would do.
We also would discuss lifestyle modification factors like we already have earlier in this hour. There are also medications that you can take to help to decrease your risk of breast cancer. And so if you're eligible for that, that would be a personal discussion about whether the medications are right for you, because certainly medications do have their own side effects, whether it's worthwhile enough for you to take that.
And in addition to that, everyone always asks the question, "Should I have my breasts removed?" And I think one of the previous questions alluded to that. And that's obviously a very long and personal conversation about what having surgery is like, what the benefit would be to you and what, obviously, the risk would be for you, as well. So those are certainly a lot of the points that we would go through if you're at high risk.
And in addition to that, obviously getting a clinical breast exam with us. And sometimes we see you every six months, depending on what your risk level is. Or sometimes you can alternate that with your gynecologist so you're always getting sort of a clinical breast exam maybe twice a year, depending on the point of the year.
There are certainly a lot of...I think one thing to emphasize is that it's a lot about information and getting the knowledge. I think a lot of women have this fear of being genetically tested or being found that they're high risk. And they think automatically, because it's been popular in social media, that you have to do a very dramatic surgery and have to remove your breasts and everything.
And I think it's really a time to open up the discussion about what alternatives are possible. Even if you are BRCA positive, I do encourage women to think about what the options are. They don't have to have their breasts removed right at the moment they find out they're diagnosed. They don't have to have them removed ever. But in the cases where they're waiting or they're not sure yet, then we want to make sure we're taking the appropriate measures, like getting an enhanced screening, so that they can be protected in the meanwhile and sort of watched as carefully as possible until they make a different decision.
Tim: Really goes to the "knowledge is power." Get the most information up front, the genetic testing is an easy thing to do. Responding to what the test says, I guess, is where all of the science and expertise comes in. Right? Okay.
Another question that has come in to us here for the panel, "Do you suggest going on chemo prevention drugs such as tamoxifen or an aromatase inhibitor? I worry about the side effects of the drug versus the risk reduction." I'm not sure who wants to tackle that. Dr. Young, go ahead.
Dr. Young: Probably good for me. So really, these drugs are really only for women at a certain risk level. So we would have to determine what your risk level is first. And also for women over the age of 35. Most of these drugs are very well-tolerated, but they are taken for five years at a time. So it's not just something you do once and then you've managed to reduce your risk and you don't have to take it anymore. It's a daily pill that you take for five years.
Generally speaking, the pills can reduce your risk by about 50%. Which sounds great, and it is a great reduction. But also keep in mind that if your risk is 25% over your lifetime, that really brings you down to 12. And so it sounds different when I say 50% risk reduction, obviously that sounds wonderful. But also the pills, the effect of it last for the five years that you take it, plus an additional about five to ten years after you finish taking it. So it's nice that it has that sort of lingering effect over that period of time.
But they do have side effects on their own. And some of the side effects, depending on which pill, could include things like having blood clots in your legs or lungs, developing cataracts or having endometrial cancer. So we want to talk about what your personal risk is and whether that's worthwhile to you. The other pills, which are for postmenopausal women, do also decrease your bone density and can give you muscle and joint pains. And so I'd have to meet you and we'd have to talk about that.
There are a lot of women who, after hearing the side effects, may opt not to really start it or they may opt to start it and see how they feel on it. And if they feel that it's not...that they're having side effects that they can't tolerate, then we stop it. But certainly taking a pill is a discussion you need to have with a physician, about whether that's really right for you or not.
Tim: All right. On a screening front here, Dr. Bonaccio, "What options do I have, other than radiology, for a breast exam? I don't like the idea of radiation at all," says this person.
Dr. Bonaccio: Yeah. Unfortunately, really the only test we have that has been shown in good randomized control trials and observational studies to lower your risk of dying from breast cancer is the mammogram. And it's that basic four-view mammogram that most of the studies were done with screen film. It's not a perfect test, we're always trying to improve it and learn from new tests. But it is our best test, or the most proven test.
Breast MRI does not involve radiation. But as we've talked about previously, we don't do breast MRI without the mammography, it's done in conjunction with the annual mammography. But it's important to remember mammography has improved and the digital technology has continued to improve, which has continued to lower the dose of an annual mammogram. It's a very small dose. And the ages our breasts are most sensitive to radiation is when we're very young, in our teenage years and our twenties. So at the time when you're getting mammography, it's a very small dose and your breasts are not as radiosensitive.
So there has been a lot of controversy about mammography. But as far as the safety of it regarding the dose of radiation, there is great agreement that it is a safe test.
Tim: All right. One final very specific question. And Dr. Voian, I think this one will put you on the spot here. "I've been tested and I have the BRCA gene mutation. I had ovarian cancer two years ago at age 51. Family history is heavy on breast cancer and one case of PPC, all after the age of 60. Is there any way of knowing from the mutation I have if I need prophylactic mastectomy or can I stick with increased surveillance?"
Dr. Voian: So assuming that PPC is primary peritoneal cancer, you have a BRCA mutation. I do not know if it is BRCA1 or BRCA2. But regardless of that, you have strong family history of ovarian and breast cancer. So there is no way, by knowing the mutation, to tell you what is your risk to develop breast cancer. But we know that generally having a mutation in the BRCA1 or BRCA2 genes, you will have an increased risk that would be up to 85% lifetime risk.
And again, as Dr. Young mentioned, you have the option to have bilateral mastectomy. It's not a recommendation, it's a personal option. Or you can have enhanced screening which would include clinical breast exams twice a year, mammogram once a year and breast MRI once a year. And those will continue until you are healthy. And it will be your personal decision to choose bilateral mastectomy or to stick with enhanced screening. And having a discussion with the High Risk Breast Clinic, I think, will help you to make that decision.
Tim: Dr. Ambrosone, we come to a close really quickly. Time flies when we're having fun here on Cancer Talk Live. Some parting thoughts maybe from you as we talk about high risk breast cancer, what it means to you and the most important thing you'd like to get out there to the people that are watching this webinar today.
Dr. Ambrosone: Well, of course being screened is really important, and checking in with your doctor. But one thing I did want to mention is there's a lot of hope for the future. There are a lot of tests now that are based on blood that's just in the research phase, but being able to identify tumor DNA in blood. Our Center for Personalized Medicine here at Roswell Park is working on developing those assays. So not now, it's not available now. But all over the country, all over the world people are working on trying to identify blood tests that can then say you really need a mammogram or you really need enhanced surveillance. So there's a lot of hope for the future for additional detection.
Tim: All right. Dr. Ambrosone, thank you so much. Dr. Christine Ambrosone, Professor of Oncology here at Roswell Park. I appreciate your time today. Dr. Bonaccio, since you talk a lot about what women can do, should do about their screening, some parting comments and thoughts from you today.
Dr. Bonaccio: Basically what we've already touched upon through this conversation. For women at average risk of breast cancer, despite the confusion, I think it's very important to continue having annual screening mammography at age 40. And for women who are at high risk for breast cancer, I personally believe that the multidisciplinary approach that we have here at Roswell, or other multidisciplinary approaches, is your best option where you can have conversations about chemo prevention, surgery, enhanced screening. But the most important thing is for you to start the conversation with your physician and determine if you're at high risk and have the information of what your options are.
Tim: All right. Dr. Ermelinda Bonaccio, thank you so much for the expertise and time today. Director of Mammography here at Roswell Park. Dr. Young, some final comments for those out there.
Dr. Young: I think we've said it a lot today, but information is power. And I think starting that conversation, finding out...if you think you're at high risk at all, don't be afraid to ask those questions. And really once you have the information, you can do with it what you want to do. So don't be afraid that something very dramatic is going to happen if you find out that you're at high risk. It's just more power for you and more information and getting to know what options are available to you. And I think just getting and having that done is probably the most important part. And just screening, screening. Screening is huge, can't emphasize enough.
Tim: Say it one more time.
Dr. Young: Screen. Screen away. Really breast cancer is...no one wants to have cancer. But if you can catch breast cancer early, it's usually very treatable, very curable and we can't, unfortunately, say that of every cancer. And so even if you're just at average risk, if you are just screening all the time, hopefully we'll catch things early and we can get you back to good health with some treatment.
Tim: Dr. Jessica Young, thank you so much. Director of Mammography. That's you. I'm sorry, Dr. Bonaccio. Just gave your job away. Dr. Jessica Young, you're a breast surgeon and also the Director of the Breast Cancer Risk Assessment and Prevention Program here at Roswell Park. I don't want to move the pegs around too much. And Dr. Voian, some final thoughts as we talk about high risk breasts.
Dr. Voian: So if you are concerned of your personal history or family history of cancer, do not hesitate to call 1-877-ASK-RPCI to see if you're eligible for genetic counseling and genetic testing. Also, if you had genetic testing in the past or you did not qualify for that in the past, please call. Because now guidelines changed, new genes were discovered. We have new guidelines. For some of them they're like at the very beginning, but hopefully in the next years we'll have more guidelines even the moderate penetrant genes. So please call at 1-877-ASK-RPCI.
Tim: Dr. Voian, thank you so much. Dr. Nicoleta Voian, by my side, Assistant Professor of Oncology here at Roswell Park. Thanks to all of the panel members today. It's always interesting and a wealth of information when we present here at Cancer Talk Live. We'll do it again real soon. Some information for you before we part. The phone number has been given out many, many times and here it is once again. It's 1-877-275-7724. That's 877-ASK-RPCI. Some information available to you, of course, all the time on the web at RoswellPark.org. And specifically you can go to RoswellPark.org/breastcancerrisk or /breasthealth. And you can get an awful lot of information.
Thank you so much for joining us and we hope to be back with you with Cancer Talk Live again.