Dense Breasts 101, with Julie Gershon

[00:00:00] When I received a report that told me this was cancer, it really hit me. I was like, oh my gosh, this is not benign. Every healthcare provider I talk to has this one moment in their career which stands apart from everything else. My name is Julie Gershon and I am a breast radiologist. Julie Gershon specializes in breast screenings and she has her own practice in Connecticut.

[00:00:24] At her practice, she does mammograms as well as breast ultrasounds, two different types of screening for breast cancer. When I first opened my practice, I had a mammography technologist with me, but no ultrasound technologist. So I self-taught how to do these screening breast ultrasounds. The first one of my friends, good friends of mine, had come in for her mammogram and her screening ultrasound and I came across something on the ultrasounds.

[00:00:58] Julie Gershon, I think my expectation going into it was it was going to be a benign fibrous nodule. A benign fibrous nodule. A non-cancerous breast lump, basically. Julie Gershon, I wasn't sure what it was really going to turn out to be, but I felt we needed to biopsy it and it came back. It came back as a low-grade cancer. And I have to say, that case hit me hard because she is a good friend. She's a little younger than myself.

[00:01:27] And here I am, I'm doing these screening ultrasound and I picked something up. It's one thing to hear about other people detecting them, but when you do it yourself and you're like, oh my gosh, OK. Julie's patient and friend got treated in time and her cancer was very early stage. But this was the case that brought it home to Julie how important these breast screenings really are.

[00:01:51] So I'm always very, very cautious, you know, with anyone who has dense tissue. And all we can hope for is that we catch it when it's small, when it's early stage, and that it can be easily treated and that the patient can be essentially cured. But what is dense tissue?

[00:02:15] If you have had a mammogram and you've been told that you have dense breasts, consider this the start of your education in breast density and its relation to breast cancer. Julie Gershon walks me through all of this and more, including new regulations in the United States about breast density and informing patients and what screenings we as patients should have. That's all coming up in a minute.

[00:02:43] This is Overlooked and I'm Golda Arthur. If you live in the United States, there is a whole other side to this topic of breast density. Insurance companies will often pay for a routine mammogram, but often don't pay for that follow up ultrasound, which makes it an out of pocket cost for you, the patient.

[00:03:07] That cost makes this necessary and potentially life saving screening out of the reach of many women. So what's going on here? That's a question that I'm going to put to Jessica Balladad, who is a patient advocate and breast cancer survivor herself. And we're going to talk about how to deal with insurance issues like this. If you're a Patreon member, you get to send in a question that I'll put to Jessica during the recording. And if you're not, check out our show notes for the link.

[00:03:36] The episode with Jessica will be published in this feed in May. I remember talking to my sister on the phone before I opened the email that had those results and I was just crying. Uncertainty is everywhere in medicine. Like what if I'm not allergic to my implant? Like what is happening to me? But we don't always know what to do with it.

[00:03:58] I will never forget one orthopedist who, when I didn't improve on the basis of his diagnosis and treatment, said to me, you know, patients like you are really unsatisfying for doctors. Join award winning medical storytelling podcast, The Nocturnists, as we dig into the gray zone. Stories of ambiguity, uncertainty and medical mystery from clinicians and patients. We talk about in medicine, we use a shared decision making model.

[00:04:26] We're sharing all the information and come to a decision together. It's not really how it works. When people come in with kind of vague symptomatology and gaps in the history, I would just go straight Joe and say, now tell me what's really wrong with you. And out it will come. First episode drops this spring. See you there. Now back to the episode. Hey Julie, nice to meet you and thank you so much for being on Overlooked. Thank you very much. Pleasure to be here.

[00:04:55] I mean, that must be incredibly hard to do to break that news to someone. Before you pick up that phone and make that call, what goes through your mind or how do you center yourself or ground yourself? What is the conversation inside your own head before you pick up that phone? Unfortunately, I've had to do it more times than I'd like to. But patients are aware that I'm going to call them the next day after their biopsy has been done. And typically I'll let them know your result. Some women mentally are prepared for this result.

[00:05:25] And so take it fairly calmly. Now I have other patients who break down on the phone and that makes it much harder for me because I think I'm more of a very touchy-feely type person. So when someone on the other end of the line starts crying, it almost brings tears to my eyes to have to tell someone this. And all I can do is let them know that I'm going to get right in touch with the surgeon's office. We're going to get you right in to be seen. And we try and just go from there.

[00:05:52] As I've done this year after year after year, I can almost determine when I'm going into the case if it's going to be positive or not. So I kind of in my own mind can set my mind to what the results going to come back as. Right. And what we're going to be talking about specifically today is dense breasts. And the reason I'm curious about this topic is because on my mammogram report, it does say that I have dense breasts.

[00:06:19] And in talking to some of my other friends who range between 48 and 52, they're like, oh, my God, I've got dense breasts, too. And so we are all talking about this thing that we have. But we don't, I think, fully understand what it means in the larger context of our bodies. What do we mean when we say dense breasts? So it's really an interpretation based on the mammogram findings.

[00:06:48] You can't really determine by self-exam whether or not you have dense breast tissue or not. And it's more of an issue when we look at the mammogram. We're determining how much white as opposed to gray we can see on the mammogram. The more white, the harder it makes the mammogram to interpret because anything that's going to be abnormal, cancer or distortion, will typically show up white on the mammogram.

[00:07:15] The white part of the mammogram is the glandular and fibrous tissue of the breast. So those women who have more glandular and fibrous tissue are going to have much more white on their mammogram as opposed to those that have more fatty breast tissue, which will show up gray. So a woman who's completely fatty breasts, the whole mammogram is gray. Very, very easy to see if there's an abnormality because anything white is going to be very easily seen in that gray mammogram.

[00:07:45] And then you're looking for that cancer and it's also going to be white and you just can't see it in there. So that's what it looks like from your point of view as a radiologist. From our point of view as people who just sort of have breasts, does it feel any different? Does it seem any different? I hear a lot of women complaining of breast pain every day. Honestly, it's a very common issue and we usually attribute it to hormonal changes in the breast affecting the breast tissue.

[00:08:15] And typically it's women who have more of this glandular breast tissue because that's the tissue that's stimulated by the hormone. So women who have denser breasts may have more breast tenderness. They may complain of more lumpiness or nodularity. They say they can't do a self-exam because everything feels lumpy bumpy. And that's oftentimes that dense tissue has a more harder, firmer feel to it than the fatty breast tissue.

[00:08:47] Are dense breasts a precursor to cancer? I'm not sure if I would call it a precursor or not, but there is noted to be a higher risk of developing breast cancer if you have denser tissue. And most of the articles are seeing about a four to six time increased risk of developing breast cancer if your tissue is denser. Is the tissue that's denser or glandular tends to be active tissue. So stimulated by the hormones, things tend to grow.

[00:09:17] You'll see cystic changes, fibrous changes, and obviously cancer can grow in that dense tissue. Not to say that if you have fatty breasts, you would never develop a breast cancer because we see that too. But it tends to be more common in patients who have denser glandular tissue. So what do you want people to know if they get a report that says you have dense breast tissue? Like what are the kind of questions that we should ask to fully understand it for ourselves?

[00:09:45] It's important to know whether or not you have dense tissue because there are additional screenings or additional imaging that can be done to better look at the tissue. The FDA just came out this past September with a new law that basically every radiologist or imaging center interpreting imaging needs to notify the patients of the density.

[00:10:08] And with that information, the patients can then hopefully advocate for themselves or the imaging facilities advocating for them to get some additional imaging to help better look at it. So typically ultrasound is what we're doing in most cases. It's screening ultrasounds just to scan through all the tissue to make sure there's nothing hiding in there that we may not see on the mammogram. There are women who are higher risk that then will sometimes have MRI imaging done.

[00:10:36] And that's really kind of more the gold standard of imaging, but it's expensive and it has to be authorized by insurance and it's not always approved. But I think it's important for women to know whether they have the denser tissue because if they're not being offered additional imaging to look at it, then hopefully they can say, look, I have dense tissue. I would prefer to have some additional imaging done just to make sure there's nothing that I need to be concerned about.

[00:11:01] I'm really glad that you use the word advocate because a lot of what overlooked does is help women advocate better for themselves, empower them with a bit more knowledge than they already have. So, for example, I got my letter. It says you have dense breasts and that's it. No follow up, no nothing. Anything else was benign on it.

[00:11:24] It's interesting to hear you say that, you know, you should be calling back and saying, okay, what additional screening can I do? That's not already baked into the system, is it? Into process. Right. And I'm hoping that now that it's FDA required that this information go out to the patients, that there is a push to get more people through additional screening.

[00:11:47] You know, in the state of Connecticut, I think because we've been doing this for so long, we were the first state to actually begin the notification process in 2009, that it's become so second nature to us here that we don't really think about the fact that there are many places where women are not being offered the additional screening. And it's not everywhere. And a lot of women really don't understand what it means. I think a lot of doctors don't understand what it means and what additional imaging really would be of value.

[00:12:15] So I think it's important for women to have this knowledge and then maybe they can ask for some additional imaging on their own if no one's going to recommend it to them. This FDA aspect of it is new to me. Can you tell me a little bit more about that and kind of what's behind it? Where did it come from? Well, it came from actually starting here in Connecticut. We started back in 2009 with dense breast notification law that went into effect.

[00:12:42] And then what happened was the woman who helped to get this law passed, women in other states started to reach out to her, realizing they had similar situations where they had had a mammogram that was normal and then a subsequent screening ultrasound detected their cancer. And how come they were never told that they had dense tissue either? So this woman who started the whole process here in Connecticut started working with women in other states.

[00:13:08] So it was going state by state by state to pass these laws that notification needed to be implemented. And it was really taking a while, like a process to get all the states to do it on an individual state basis. And finally, there was a push to get it to be a federal bill and finally passed. And so it was literally just this past September that the FDA has now come out with regulations that all patients need to be notified of the density.

[00:13:37] When the FDA inspectors come to the mammography sites, they need to see what these letters look like because the letter has to say a specific wording. It should be on every patient's mammogram report. They should have specific wording stating whether or not they have dense tissue or not. And the wording itself specifically also does say that additional screening may be obtained and it would be a further value in excluding any possible underlying cancers. This is fascinating.

[00:14:06] Who was the woman, Julie, who started this whole thing? The woman who started the whole thing is Nancy Capello. She had a normal mammogram. The mammogram was fine but didn't show anything, but she felt something and pushed to get some more imaging. And that's when they found it on ultrasound, a mass, which was already a stage 3 cancer at this point. And then she inquired, how could the mammogram not show this?

[00:14:31] And that's when the whole density came out that, well, it was so dense we couldn't see it. So that's when she really kind of started to work with this whole breast density. And she really was amazing in really getting the bills passed in different states and helping women to get through this process.

[00:14:56] She ended up undergoing a lot of chemotherapy treatments and so subsequently recently passed away from unfortunate side effects from some of those chemotherapy agents that really messed up some of her blood system. So anyway, she's no longer with us, but her name will live on. She really was a promoter for the dense breast laws that are now in effect.

[00:15:24] Women's medical history, firstly, does not stretch that far back. And secondly, women's medical history is kind of still being made. We're living through it. Something like this dense breast law, which is so new, started by someone who lived in my lifetime, for example. It never ceases to amaze me how much more there is to do in terms of women's health research. Yes, that's true. Here's another thing that you've just made me want to talk about.

[00:15:52] When you talk about the difference between what a mammogram picks up and what an ultrasound picks up, can you explain that to me a little bit more? So the mammogram imaging is usually it's four images of a breast and they're in a 2D format. Basically, we're looking at two views of each breast and then you can only see like a piece of paper hanging up on a board. The ultrasound is more of a three-dimensional image.

[00:16:19] So you can really see from the skin all the way down to the chest wall of the patient because you're seeing through all of that tissue. And it's done real time. So you're scanning and you're looking at the same time and you're seeing things in different planes. So it really just gives you a very much more three-dimensional appearance of what's happening in that breast tissue. Let's talk about mammograms for a second.

[00:16:42] Every single year when I go to get my mammogram and I'm standing there with my boobs squashed between two hard, cold pieces of plastic and trying not to take it out on the radiologist because it's not her fault. And every time that happens and you're in this odd position, you have to like stretch your arm out and kind of hug the machine.

[00:17:07] I curse Mark Zuckerberg and I curse Mark Zuckerberg because I think to myself, wait, we have Facebook, but we don't have a better way to do a mammogram. Right, right, right. As a society, you know, we spent our money in the wrong way. Let me put it that way. And it just always seems to me every year, can we not do this better? So let me ask you this, Julie, highly scientific question. Right. Why do mammograms suck so bad? Yeah, it would be nice. Feel free to tell me.

[00:17:35] It would be nice if someday someone could find a better way of taking an x-ray, what we'd like to say, of the breast. Because, you know, it's just like getting an x-ray of your body. You can see through what's happening. And unfortunately, I think because the breast tissue, if you don't compress the breast tissue, you're not going to see well enough through it to make an interpretation.

[00:17:57] So there are times when I can tell a tech hasn't compressed the breast tissue well enough that I need it recompressed. Because sometimes these very small cancers, the only way to see them is once you compress the breasts, a speculated area appears. And if you don't compress that speculated area, it's just going to blend right in with the rest of the tissue. So it does require compression to get an adequate image. And whether we can at some point get away from that compression, I don't know. These have been around for years now.

[00:18:27] So no one's quite come up with another modality that would eliminate that compression. I love the word speculated, but I don't know what it means. Tell me what it means. Almost star-shaped, I'd say. If you were, you know, looking at something that had kind of pointed edges or it kind of radiated out like the sun, those are signs to us of something worrisome. If we see a, quote, speculated density, that's a language that we use that implies there might be something going on in this area.

[00:18:55] I will say that every time I start to complain in my head too much when I have a mammogram, I remind myself, at least we have a way to screen for breast cancer, right? Because in my family, of course, we've had ovarian cancer and we have no way to screen the ovaries. The ovaries are like a black box, almost a complete mystery, although that's starting to change very slowly now in science. So I am grateful to have multiple ways, in fact, to screen for breast cancer.

[00:19:22] And that's how I always sort of grit my teeth and get through it. But something else you said that I'm curious about, has the technology of mammograms or the way we screen for mammograms, that doesn't seem to have changed very much in the last couple of decades, or am I wrong on that? When I first started doing mammography during residency, we were using films. And so much of radiology was on film.

[00:19:50] We would hang these films on these view boxes and read them. And that was just normal. And then you stick them back in a big file jacket and all these films are stored in these large storage areas. And now so much of radiology, almost all of radiology, I should say, now is digital. The imaging was much sharper with the digital mammography. We could see calcifications much more clearly. We were picking things up much better on the digital imaging than we were on the film screen. So that was a big improvement.

[00:20:21] In 2011, the FDA approved tomosynthesis, or what we call 3D mammography, which is a whole other way of imaging that was intended to hopefully not only detect more cancers, but to help in patients who have a lot of dense tissue so they could scroll through the images to see if there was anything hiding in there, and maybe eliminate the need for screening ultrasounds or additional imaging for dense tissue.

[00:20:51] From most of the literature that's come out after 10 years of this going on, they haven't found large increases in the cancer detection rate with the tomosynthesis. They've found that the screening ultrasound is really far superior for looking at the dense tissue, that you're really going to see much more on ultrasound than you are on this tomosynthesis imaging.

[00:21:17] In terms of like what's coming next, what's changing in terms of mammograms, I was really surprised to see that my radiology company was offering the option to have my mammograms read by AI. And I'm like, you know, I use ChatGPT a lot, but this was a curiosity to me. And I thought, sure, let's try it. From where you sit, how do you feel about AI reading a mammogram?

[00:21:44] Yeah, there's a lot of AI out there now. And from what I've seen at different meetings, the AI is more at this point an assistant. I think it's great if patients are going to facilities that are doing hundreds of mammograms a day, an AI can scan through the mammogram images and say, I would say these are all fine. Don't worry about any of these cases. So then maybe the radiologist, I would hope the radiologist still looking at him,

[00:22:12] could quickly say, OK, I did not see anything worrisome here. I can pretty much say assured, let's quickly get through these. These are all normal mammograms. Whereas if it can flag cases where it's got areas of concern, those perhaps would be then brought to the attention of the radiologist, maybe a sooner time frame in this hundred pile of cases that need to be looked at. And they could maybe dedicate a little bit more time and make a decision more quickly about whether

[00:22:39] this patient needs additional imaging or is there something worrisome here that I need to notify the patient about. So it's an adjunct to the imaging. I wouldn't say it's a standalone interpretation at this point. At least I would hope not. I would hope so too. It definitely is like another set of eyes on the imaging to help us out. But I'm hopeful at some point that they don't eliminate our job and say the AI can do it all for them.

[00:23:07] Yeah, that's not a world I want to have my breast screened in. So let me ask this question to you, Julie, that I ask all my guests on the show to wrap up.

[00:23:30] What do you think is the most overlooked aspect of dense breasts and of breast screening? And in being overlooked, it must create some inequality. So where do you think that inequality is felt most deeply? I have to say probably the most overlooked part about breast density is maybe just the knowledge of what it is and what to do about it. And what is the additional imaging information going to give me about it?

[00:23:58] I think just the knowledge people don't always necessarily understand exactly what breast density is. And so part of it is education and educating women about it and what it means and how they can be proactive about it. I'd say probably the biggest inequality associated with it is access to the additional imaging. So a lot of insurance carriers are not paying for the additional screening. So women are either forced to say, I don't want to do it because I can't afford it, or they're doing it.

[00:24:28] And then they're getting bills for the screening ultrasounds that then they have to figure out how to pay for. So in addition to the fact that it's not always easy to get the studies, then you have to have the income to be able to pay for the study if you're having to get it done. Health insurance. Yeah, that's going to be a whole other episode, I think. Julie, you and I have a very nice meet cute story. It was like the universe wanted us to be talking to each other. We don't know each other at all.

[00:24:57] And I'll tell listeners that story really quick. I did a mammogram, my annual mammogram, and I got a letter from the place that did it. And the letter was signed by one Julie Gershon. And I thought, oh, maybe I can talk to my radiologist about my breasts and what that was like. So I Googled it, Julie Gershon, and changed the name to your name. I think it's the difference between spelling Gershon with a U and with an O.

[00:25:25] And so I called your office and you were like, hi, I don't know who you are. I'm great to talk to you. I was like, I didn't read your mammogram. That's right. That's right. And you're based in Connecticut and I'm based in New York City. And there was this moment on the phone where I thought, have I called like some random person and you were really kind about it. And we decided there and then, but actually the stuff we can talk about together.

[00:25:53] So thank you so much again for sharing all that information with me. That was great. All right. Thanks so much. We're building a community around women's health so that no one is overlooked. If you'd like to be part of it, hit the follow button on this podcast, wherever you're listening to this, or you can show us some love by writing us a review and sharing this episode with someone. Overlooked is written and created by me, Golda Arthur.

[00:26:22] Jessica Martinez-Tijos is the show's producer. You can stay up to date with the show by signing up for the newsletter and following us on Instagram and LinkedIn. We read every review and email. So write to us, hello at overlookedpod.com. Thanks for listening.