Know your options: Understanding your risk-reducing breast surgical options

Join Living Beyond Breast Cancer, Penn Medicine, and the Basser Center for BRCA for an important webinar on how to assess and understand your breast cancer risk, as well as learn about the risk-reducing surgical options for those who are at high risk for breast cancer or have BRCA1/2 gene mutations.

Leading experts from Penn Medicine and the Basser Center for BRCA join us to discuss and provide their insights on the latest in BRCA treatment, breast cancer risk evaluation and genetic counseling, risk-reducing mastectomy options, advancements in breast reconstruction after mastectomy, and post-surgical management and care.

Transcript

Ali Rogin [00:00]

Hello everyone, and welcome, on behalf of Living Beyond Breast Cancer.

This is Know your options: Understanding your risk-reducing breast surgical options. My name is Ali Rogin, and I am a correspondent with the PBS NewsHour.

Today we have a group of wonderful experts who are going to be discussing breast cancer risk assessment, the role of genetic counseling, risk reducing mastectomy options, as well as post-surgical care and surveillance.

This is a topic that is very near and dear to my heart, as I myself am a carrier of the BRCA1 genetic mutation. I had a prophylactic bilateral mastectomy with reconstructive surgery back in 2009. And more recently, just a few months ago, I had a pre-pectoral conversion as my implants were put sub-pectoral when I originally got them done. So, I am not only your moderator, I am going to be a consumer of the information that is shared tonight.

I’d also like to thank our sponsors for their generous support of this program, the Abramson Cancer Center at Penn Medicine, Basser Center for BRCA, and Restore Penn Medicine Center for Advanced Breast Reconstruction. I would also like to thank our promotional partners: FORCE, BRCAStrong, and Sharsheret.

We are fortunate to have three amazing speakers today. I’m honored to introduce you to Angela Arnold Ross, who is a genetic counselor, followed by Dr. Lola Fayanju, who is the chief of the division of breast surgery for the University of Pennsylvania Health System. And then Dr. Suhail Kanchwala, who is the director of reconstructive microsurgery at Penn Medicine Plastic Surgery and chief of section of plastic surgery at Pennsylvania Hospital.

After each speaker’s presentation, I will come back on the screen for some follow-up questions. And at the conclusion of all the speaker presentations, we will have time to take some of your questions. Please be sure to read the full bios of our speakers at LBBC.ORG. So let’s get started. And I want to welcome Angela Arnold Ross.

Angela Arnold Ross, MS, LCGC [01:56]

Yes, thanks for sharing your story, Ali, and thanks for having me present today. Because it’s a topic that I’m very passionate about. I love being a genetic counselor, and I love what we do.

Today I’m going to discuss the role of a genetic counselor when it comes to surgical decisions, and to also talk about what genetic counseling is. It’s a very short time period to get everything in, but I think I’ve managed to do it. And of course you’ll have questions at the end. So for the sake of time, I’m just going to get moving.

When we are talking about genetic testing, genetic counseling, what are we talking about when it comes to genes and all of that stuff? With genes, we inherit two copies of every gene: one from mom and one from dad. Now genes make proteins and proteins do the function in the body.

The genes we think about when we’re talking about familial cancer risk are actually nothing to do with who we look like, who we act like, they are genes involved with repairing DNA to stop cells from becoming cancer. They’re called tumor suppressive genes, oncogenes or DNA repair genes. And literally that is their function, to stop cells from becoming cancerous. And most people are born with two copies of these genes working fine.

Breaking it down a little bit further, when we are thinking about a gene and DNA and mutations, what we are looking for in genetic testing is a mutation in a gene that disrupts it from doing what it’s meant to do. In this case, as you can see by this slide, is we are looking at a mutation that can affect the protein to the point that it’s abnormal. There’s not enough protein there to do its job, or it doesn’t have the ability to make protein. So it’s essentially lost its function.

Then since we are talking about inherited risks, when we inherit a mutation in our genes, we have some flags that we use in in genetic counseling to see if someone meets criteria for genetic testing. Are they in the high risk category? What’s it looking like in the big picture? And these are some flags that we look for, and something that you might want to keep in mind as well, is we look for cancers in every generation. Generally we see cancers occurring at a younger age when we see familial risk. We can see rare cancers, such as male breast cancer. We can see other rare cancers when it comes down to pathology, which is important to get some pathology reports. We request those often. Also, if someone has more than one cancer diagnosis, be it bilateral breast cancer or breast and ovarian cancer. And again, it’s very important to think about this when you’re thinking about your family history and see whether that’s something you want to look into a little bit further.

What do we do more broadly when it comes to genetic counseling for cancer risk? Well, we use the following tools to help better our risk assessment, to give you the best idea of where you fall with risk. Is it high? Is it lower? Do you meet eligibility for genetic testing? And so on.

Angela Arnold Ross, MS, LCGC [05:10]

Family history is very important. I know we can’t get that information all the time, but that’s very important. As I showed on the previous slide. We like to get medical and pathology reports, when possible, to confirm cancer diagnoses in the family. Genetic test results. If we have some from family members, it’s very important to get those, and I’ll explain that a little bit more in a minute. And we use peer reviewed articles, national guidelines, and importantly we consult with team members including surgeons, other genetic counselors, doctors, oncologists, and research staff to better look after our patients.

Speaking of consulting and talking to other professionals and family members and patients, I’d like to point out, just to be a little bit aware of how you’re speaking about genetic testing. And we’re all guilty of saying it in this way, but when we hear someone saying, “I’ve had genetic testing,” that could mean prenatal testing, which a lot of the time we see people who have that, cancer genetic testing, direct-to-consumer genetic testing, pathology or tumor genetic testing. So it has multiple meanings.

Additionally, when someone says, “Oh, my doctor told me to get tested.” Is that screening? Do they need screening? They want to get a mammogram? Or what testing are they talking about?

Additionally, we hear this a lot, “I have the breast cancer gene.” Remember what I said before? We all have the breast cancer genes. We all have these tumor suppressive genes in our bodies. And in this situation, someone means that they have a mutation in a breast cancer gene that predisposes them to breast cancer.

When we’re talking about genetic testing, what are the benefits? Well, people who have inherited risk for cancer, have a significantly elevated risk over the general population, or an elevated risk over the general population. Genetic testing can clarify these risks to determine who’s at risk, can help people with reproductive discussions. Are there any risks to future offspring? We talk about targeted therapies. Sometimes genetic testing can play a role in targeted therapies. It can also determine, as I said, who’s at risk for cancer and maybe take some of the concern off, although obviously not always. And then we can think about eligibility for research trials, chemotherapy options, and exactly what we’re talking about today, the benefits of cancer surveillance. Do you need to be doing increased cancer surveillance? Should you be talking about risk-reducing surgery? Should you be thinking about chemo prevention like tamoxifen and other things like that?

A lot of people don’t realize when they come to us that most cancer is actually not familial. Most cancer occurs by chance. It doesn’t make it any better, but it does. In that percentage of people with, for today’s sake, breast cancer, there’s a small proportion that do fall into that familial category. And the most common genes that we find people have mutations in that predisposes them to breast cancer are the BRCA1 and BRCA2 genes.

Now, a lot of people have heard about the BRCA1 and BRCA2 genes. They were the first and second genes found in familial breast cancer families. And then we found associations of other cancer risks such as male breast cancer, ovarian, prostate, and pancreas cancer. But these two genes, and they’re very well researched — we’re the center for BRCA — but these two genes are two of hundreds of genes in our cells that protect our cells from becoming cancerous.

It’s important to note that it’s not just about BRCA 1 and 2. Because we’ve expanded our testing ability; it’s amazing the technology that’s changed over the number of years. I was here in 2008, from 2008 to now genetic testing has just gotten so, so much better. We can test more of the genes, more coverage of the genes. So a lot of people are having multigene panel testing now, which includes genes of high risk like BRCA1, BRCA2, TP53 for example, and genes that provide lower risks like moderate or low penetrance risks. Now while they’re not high-risk genes, they still provide enough elevated risk to have discussions about surgery, to have discussions about surveillance and increased surveillance options.

The point of that was just to say if you’ve had BRCA testing, and that’s all you’ve had testing for, it might be worthwhile speaking to your genetic counselor or your doctors to see whether it’s worthwhile or indicated to update your testing to 2024 standards.

Angela Arnold Ross, MS, LCGC [09:50]

Now, this is a very big slide, don’t worry about the details. I went through the NCCN guidelines, which are some of the guidelines that we use to determine surveillance recommendations and so on. And importantly, it shows you that when we see the higher risk, such as BRCA1, BRCA2, TP53, we start screening earlier than the population risk. That can start as early as 20, and we start with breast MRIs.

We don’t do mammograms under the age of 30 because of breast density. Someone told me once it’s like looking for a polar bear in a snowstorm, for better language. So we do MRIs, because MRIs can pick up things that mammograms don’t. Those things, you know, we take into account. So depending on the gene, depends on the risks, depends on the discussion that we have.

Additionally, when I look through the guidelines, these are what they mention about risk-reducing mastectomy discussions. They recommend discussing this surgery with patients for certain genetic mutations. And that’s dependent on the risk profile of those genes.

But importantly, family history can change these recommendations. These aren’t set in stone. These are general recommendations based on amazing data. But everyone’s individual, right? Everyone has a different family history. And so your team of surgeons and doctors are going to be able to individualize that for you and your family and discuss your options accordingly.

Then sometimes also, where genetic counselors come into play when it comes to surgical decisions, is the discussion about whether there’s a second primary breast cancer risk, called contralateral breast cancer. Because people are developing young cancers because of these high-risk genes, they have say, 60-plus years of life expectancy. And because they’ve already had a predisposition because of their genetic mutation, they have certain risks. And depending on the gene, as I said, as to how high or whether we even have any data on it, there can be risks for a second primary breast cancer in 10 years, in 20 years, and so on and so forth. And so that information comes into play when patients are talking and having discussions about surgical options with their healthcare providers.

In summary — and I’ve probably gone fast today I thought I was going to take a lot longer to talk to you about genetics — but what’s our role in decision making? Well, we do provide the pre- and post-test counseling. We consent patients to have testing. We order tests for patients, we talk about billing or we advocate for our patients, and we review and interpret results. We’re usually the one stop before you see the doctors. Not always, but depending on whether you see a genetic counselor pre-test is, we’ll talk about the results, we’ll explain the results, we’ll go over the specific cancer risks that that identify, gene-specific cancer risks. We’ll then talk about what the general guidelines are for patients with mutations within these cancer genes.

And then. importantly, we then refer to our amazing colleagues who will then give you an individualized risk assessment taking in all of this information. It’s not just the test results, it’s family history, test results, your clinical picture, medical history, so on and so forth. And I just want to say it’s such an amazing team that we work with. I do love working with everyone that I deal with in my job.

The other thing to point out as well is, even if you’ve had genetic testing that is negative, depending on the extent of testing, as I mentioned before, if you haven’t had an extensive panel done, you may want to consider thinking whether you need to update your testing, you may not need to.

And additionally, family history still matters. So even if your test is negative, and I’m not taking away the good news for being negative, but it may not be the complete picture. We don’t want people to be thinking “Oh I’m, I’m fine,” or you know, things like that. Again, this is being very general, so it’s important to point out or make sure you speak to someone if you’ve had a genetic test, if not already done so, and go over the family history to see if there are recommendations regardless of your negative test results. And that’s again where the amazing breast surgeon and teams and high-risk screening programs come into play. And we refer patients on for that as well.

You’ve learned all about genetics in 10 minutes. I’m not going to test you today on it, but if you are interested in finding out more about genetic counseling, you can come and meet with myself or my amazing team at the Basser Center for BRCA. But if you’re not local, then you can find a genetic counselor. You can find one by zip code, by specialty, by going to the following website, findageneticcounselor.com and that’s part of the National Society of Genetic Counselors.

Ali Rogin [14:42]

Angela, that was fantastic, thank you so much.

I want to just ask one question before we move on. Why is it so important for people to meet and consult with a genetic counselor? And I ask that partly in the context of the preponderance of at-home tests that a person can take. I wonder do you see those as a help to the cause? Are they a hindrance or are they irrelevant? And why is it important to have that personal interaction with somebody looking to understand their genetic history?

Angela Arnold Ross, MS, LCGC [15:13]

Thanks, Ali. Yeah, that’s a very good question. We’ve had to take a step back and accept that people are now getting genetic testing outside of a genetic counseling consultation. That really wasn’t possible years ago. It was very strict and guidelines, so on and so forth.

Now it’s become a lot broader. There’s positives and negatives to that. When it comes to the benefit of genetic counseling, we are able to describe the little things that people don’t realize when they’re having a genetic test, because the testing itself is easy. It’s a blood test, a saliva test, we get DNA. We look at the genes, we compare your sequence to the reference sequence. And if it’s different to the point where it’s a positive gene mutation and then we have the answer. If it’s negative or benign, we have changes like the word “gray.” I’m Australian, G-R-A-Y. Lived in England, G-R-E-Y, they’re normal changes and that’s considered negative. But sometimes we can find changes in the gene that we just don’t have enough data to say that it’s benign, like my gray analogy, or that it’s positive. A lot of people don’t always get that information beforehand.

Look, it’s not a tragedy, I have to say, but sometimes it is concerning for people. It might ease the waters, it concerns them. And I hate to say, we’ve had people thinking they have real mutations, coming in thinking they have a BRCA mutation or they’ve got another mutation. And then when we get reports, which is very important to get from yourself or family members, we can have a look, see what the latest information is. Now the importance of that is mainly that these variants of uncertain significance often get downgraded to benign. So we actually don’t action those variants of uncertain significance. We don’t consider it positive.

There are outliers, but family history comes first. So again, you’re not going to be left, “Oh it’s uncertain, don’t worry, come back.” We’ll always base it on family history. So things that management might apply to that. But you know, it’s very important to understand your results and go over the results with a physician or someone that understands it. Because we do get a lot of people coming after the fact and some are totally fine with it and some are distraught.

Ali Rogin [17:22]

In 30 seconds or less, I wonder if we can address a follow-up question in the chat. What does uncertain significance BRCA2 mean in the report?

Angela Arnold Ross, MS, LCGC [17:30]

What happens is, when I said when we’re comparing your sequence to the reference sequence, we are looking for changes in the gene that we’ve seen before that we know causes a problem with that gene. So remember that diagram, that we have a mutation, the gene doesn’t work, there’s no protein. If you think of a gene like a book. If some kids come into the library and ripped out chapters three to 10, that book is rendered useless, right? Those are mutations we know are pathogenic, real, and the lab’s very regimented with their reporting. And that’s pathogenic and real. Then the same for benign. If it’s a spelling mistake in the book, it doesn’t matter, you can still read it, that’s a negative result.

But if we find something that’s inconclusive, be it BRCA2 or otherwise, it is a variant of uncertain significance. It’s in the DNA, it’s inherited, it’s a change in the DNA that’s there, but we just haven’t seen it a lot before. It’s not big enough to know that it causes a problem with the gene. One of the reasons for that could be gene mutations have to start somewhere. And for example, if a great grandparent has, when they first developed from egg and sperm, an error occurs very early on, a mutation or a change in the DNA is there, but it wasn’t going to do anything. It’s going to be familial because it’s so early, it’s in the egg or the sperm. It’s going to be passed on. If it’s not going to do anything, it’s not necessarily going to come to anyone’s attention. But now we’re so smart these days, it does, and it’s that family’s mutation. Now someone’s going to have it eventually, but it might take time to find that error. So it’s uncertain until proven otherwise essentially. And we do not action it unless there’s indication on family history and we do not consider it a positive result.

Ali Rogin [19:14]

Fabulous. Thank you so much, Angela.

Here on stage, we’re going to be engaging in more of a dialogue. I want to start where Angela had left off there, which is the importance of a surgical team. If somebody does choose surgery following high-risk cancer testing for a proclivity or otherwise indicated, what is that interaction like between genetic counselor and a breast surgeon like yourself?

Oluwadamilola Fayanju, MD, MA, MPHS [19:45]

Thanks. So Angela did a great job of laying out exactly what these types of genetic mutations are, and typically a patient will come and see me if they have either decided that they definitely want to have a risk-reducing mastectomy or if they’re thinking about it. My job is to really help them figure out what choice might be most consistent with their values.

The truth of the matter is risk-reducing mastectomy is a choice that many women with a known pathogenic mutation, that is a mutation that is known, it does reduce your risk of a future breast cancer, and for many women it’s a source of peace of mind. But so far as we know, there is not a survival benefit associated with having a bilateral risk-reducing mastectomy, in part because, especially if you’re someone who has a known mutation and has had that mutation since a young age, you’ve known you’ve had it for a young age, you’ve been undergoing screening and surveillance with MRIs and mammograms, you’re established with the care team, where we’re watching those people so closely that even if they were diagnosed with a breast cancer, it’s often at a very, very early and curable stage. So on balance, and this is work actually many of us have contributed to, including me as well as Dr. [Susan] Domchek who leads the Basser BRCA center. Basically, we have not found a definitive survival benefit with having risk-reducing mastectomy.

That being said, if you get a bilateral mastectomy, it does decrease your risk of future breast cancer by, you know, 98% because you’re reducing the amount of breast tissue left behind by 98%. I say that because, what I have to explain to patients is that we take out the vast majority of the breast tissue underneath the skin and then work with our plastic surgery colleagues to create a beautiful result, if people want reconstruction—or no reconstruction, that’s also a perfectly legitimate choice. But we can’t eliminate every single speck of breast tissue. So there remains a very small chance of a future breast cancer.

In summary, it does not associate with improved survival, however, it does decrease future risk of breast cancer but does not eliminate it completely. Those are the kind of nuances I have to engage with patients when they come and talk with me about whether or not they want to proceed.

If they choose to proceed, at that point we talk more about what the actual operation involves.

Ali Rogin [22:03]

Let’s talk a little bit more about that. I know there are many different types of mastectomies out there. I wonder, can you give us a brief overview of some of the common procedures that are done and how you walk a patient through those options?

Oluwadamilola Fayanju, MD, MA, MPHS [22:17]

Absolutely.

Our goal for someone who’s looking for a risk-reducing mastectomy, also known as a prophylactic mastectomy, is to have you look as good as you looked walking in the door after the surgery. And that’s something my colleague, Dr. Kanchwala is going to speak with you more about.

If a person wants reconstruction, our goal is to, if possible, offer them the kind of reconstruction that is both consistent with their values, that’s possible based on their body type, and if they can keep their nipple and that’s something that’s important to them, we try to do it. We think that that’s completely safe for almost every single type of pathogenic mutation, with the exception of p53, that is people who have Li-Fraumeni syndrome. We do believe that for those individuals the nipple should not be saved. But for all others, if it’s important to the patient and if it’s something that is felt to be cosmetically achievable between the patient, the plastic surgeon, and the breast surgeon, we try to keep the nipple.

What this means is that we are trying to keep a skin envelope that includes the skin, the nipple, but we’re removing all the underlying breast tissue. This can be done through an incision that’s at the inframammary fold or the very underside of the breast, which is where the underwire for an underwire bra basically lies against the breast. Or it can be in a vertical line extending from the interior part of the nipple down to the underside of the breast. Any combination of those types of incisions can be done with the goal of achieving a very natural look where the skin and the nipple are preserved, allowing for someone to have a really beautiful look.

In terms of what builds a new breast after the breast tissue is removed by me, the breast surgeon. Dr. Kanchwala will go into that more, but you can either have an implant-based reconstruction or an autologous reconstruction, that is tissue-based reconstruction. With implant-based reconstruction, that can either be with using first a tissue expander, it’s a temporary implant filled either with air or saline, that is salt water, that is gradually expanded until you’re at the size and shape you want to be. And then a subsequent surgery puts in a final implant, typically made of silicone.

Autologous reconstruction uses your own tissue, typically from your abdomen, to build a new breast mound by connecting the tissue from your abdomen to blood vessels in your chest. Again, filling up the space that was created by removal of the breast tissue underneath the remaining skin and nipple that is there.

Both of those, again, can create beautiful results, and what a woman chooses to do in part depends on, in the case of implant-based reconstruction, an awareness that implants typically need to be changed out every 10 years or so and that you probably need an MRI every five years to ensure that the implants are still intact and don’t have any problems.

With regards to autologous reconstruction, patients need to have the awareness, and also frankly the available tissue, that it’s a longer operation, longer recovery, and that you’re going to be recovering not only from major surgery on your chest but also on your abdomen. Thinking through with patients what’s involved with those different types of reconstruction, I often am the person who has that preliminary conversation but defer the details of what reconstruction will involve to my plastic surgery colleagues who they then see afterwards.

Probably the most important thing I try to convey to women is that having reconstructed breasts is not the same thing as having augmented breasts. That is if you had your breasts and decided to get implants to make them bigger, that is not the same thing as having a mastectomy and then having reconstruction. We give you beautiful results no matter whether you choose implant-based or autologous reconstruction. But it is a little bit different from when you, let’s say, or someone who has your natural breast tissue in place and then places an implant behind it.

The most important thing to know is that after mastectomy you are typically numb and that is typically permanent. Some people do achieve some level of sensation being regained over the course of their lives, but that is highly variable and is something that remains kind of a work in progress as to how we can improve that for patients. But that is probably the thing that is most important for patients to be aware of and that many women are under-counseled about. So it’s really important for me to go over that with women, given the implications for your sexuality, for how clothing feels, and for intimacy in general.

Ali Rogin [26:50]

Lastly, Dr. Fayanju, I want to ask, I know you’re very passionate about reducing disparities in outcomes and care and increasing equity. We hear a lot about the stats related to racial differences in breast cancer outcomes. Black women are much more likely to die of breast cancer than white women. Rates of advanced cancer are also much higher in Black women, which are horrible statistic, which I know you and your colleagues are working hard to right. But I want to ask you, do those sorts of dynamics extend into issues related to high-risk patients, surgical options, genetic testing, any and all of the above?

Oluwadamilola Fayanju, MD, MA, MPHS [27:37]

That’s a great question. Unfortunately we do see disparities, one with regards to awareness in racial and ethnic minority groups with regards to whether or not they have a pathogenic mutation. One of the things that’s interesting about pathogenic mutations versus variants of uncertain significance is that variants of uncertain significance are much more common in people of color because far fewer people of color have been tested. And so there’s more ambiguity about the results in us.

People from racial and ethnic minority backgrounds are less likely to get genetic testing. They’re also less likely to know their family history at a level that might prompt them to get genetic testing. One of the things we often have to combat in a lot of communities is a certain level of maybe misplaced privacy or squeamishness about asking relatives about what kinds of cancer they had. Say, “Oh, I know grandma had a woman’s cancer.” But there’s a big difference between the causes of ovarian cancer versus uterine cancer versus cervical cancer. And knowing which of those grandma had can be a difference between knowing whether it was caused by a virus, whether it was caused by a risk factor related to obesity, or whether it was caused by a BRCA1 mutation.

The oldest patient I diagnosed with a BRCA1 mutation was 95. And again, that is someone who, it’s too late. If we’re finding that out so late, that means she has great grandchildren who could have benefited from having that information much sooner. So yes, we do see disparities with regards to testing, we see disparities with regards to opting for reconstruction. And in a paper we published a couple years ago, we also found disparities with regards to postoperative complications even among people who get reconstruction. We think that might be related to the fact that again, racial and ethnic minorities might be more likely to enter the reconstructive process with their various medical conditions less well controlled, their diabetes less well controlled, their blood pressure less well controlled, they’re not having as good of a primary care relationship.

My takeaway from this is that it’s really important for all of us to know our family history, to know what our mothers, our sisters, our fathers as well, our grandparents have, if they had cancer, what kind of cancer it was. It’s important for us to stay healthy at baseline because it means that if we choose to undergo prophylactic mastectomy or other types of risk-reducing operations, we’re as healthy as possible and can do as well as possible through those operations.

And then finally, if it comes to the point where we realize we benefit from genetic testing as a result of our family history or other risk factors, it’s important to pursue that, get the results, and if the results demonstrate a mutation, that you share that information with your family so they can also get tested and act on information as well.

Ali Rogin [00:00]

Fantastic. Thank you so much, Dr. Fayanju. I’m going to invite Dr. Kanchwala to join us now to give his presentation, and then we’ll have a little conversation.

Suhail K. Kanchwala, MD [30:23]

Thank you, Ali, and I appreciate the opportunity to be here tonight.

I am the director of our center for advanced breast reconstruction. And between myself and my 14 colleagues, we perform an incredibly high volume of breast reconstruction and the highest volume of tissue-based reconstruction in the world.

When a patient is made aware of a diagnosis of a genetic mutation and needs to contemplate bilateral mastectomy, it’s an interesting psychological dilemma. First of all, it typically happens at a time in life that’s particularly inconvenient for such devastating news. Either in early child rearing or in advance of that, there’s so many things that go into this decision, but one thing that’s different than when a patient has a diagnosis of cancer is that this is an active decision that a patient has to make about having that mastectomy. In some ways, if there’s a cancer present, there’s a system of things that need to happen. And a patient, you know, is obviously actively making decisions, but not in the same way. This decision can be agonizing for many, many patients, I can only imagine.

But the one thing that I want to share with you today, if nothing else from this presentation, is that the options for reconstruction are phenomenal, getting better every day and so much better than even just a few short years ago. This is where we were in 2004 when I first started at Penn as a senior resident, on the left. And you can see, we considered this to be a phenomenal reconstruction. And when I first was in training, I was taught that we should talk to patients about breast reconstruction and the goals of breast reconstruction to be one where you’re going to look good in clothes. The goal was so that no one else except for patients or folks you wanted to share this diagnosis with would ever know that you’d had a mastectomy.

I think that that’s actually now kind of a terrible goal. And the reason for that is, if all we’re trying to do is to get a patient to look good in clothes, well we can achieve that without surgery at all. Prosthesis, modern prosthesis, particularly even prosthesis in swimwear, no one would ever know that you’d had a mastectomy. The goal, I think, if we’re going to put you through the recovery and the surgeries — and breast reconstruction is a journey, it’s not one surgery typically, it’s a series of surgeries — we’re going to put you through that, the goal should be a much higher standard. And I believe that the standard should be normal or as close to normal as it is possible to be. You can see on the right, this is a patient from just this year.

I love this company, it’s called ServPro. You may have seen ads for it on TV. They are a fire and water cleanup company, and their motto is “Like it never even happened.” And I think that’s like the best motto or goal for breast reconstruction, which is to go back in time before you’d ever have the mastectomy. In order to do that, what we’re really trying to do is to fool the patient into forgetting.

Now this is a process, it’s going to take a year, sometimes a little longer than a year, but at the end of the year we want to erase the memory that this ever happened. And thankfully, in the large majority of patients we can do that. We can do that for a variety of reasons. First, our techniques have evolved, but secondly, and it’s so critical, especially for those from around the country that are searching for centers and places to have this done, it’s so critical to have a good team. The cases I’m going to show you, the results that I’m going to show you, they’re cases that I participated in, but they’re not my cases. These are the cases of my entire team, and that includes Lola and her colleagues because quite frankly, without having a good mastectomy, it’s almost impossible to get the kind of results that patients deserve and, quite frankly, that you should expect.

There are a variety of different methods. In fact, within each category there’s so many nuances. We can’t go into every detail, but just to suffice this to say, when I talk to patients about what breast reconstruction is, effectively, it’s as if someone went in and essentially deflated the breast, leaving a skin envelope, often with the nipple preserved, as Lola mentioned, and my job is to reinflate that with something. And the two flavors of what we can use are either an implant or tissue. In some cases we can use a combination technique, but basically that’s the fundamental concept.

If we’re using an implant, there are a variety of different ways we can do that. As Ali mentioned, what we used to do is put expanders, which are essentially temporary implants that have a port as you can kind of see in the middle of the screen here, that will then stretch out the skin and in some cases the overlying muscle, until we get it to the size that a patient’s comfortable with. And a second surgery several months later goes in to remove the expander, which is a temporary device, and put the permanent implant in place.

We no longer do implants under the muscle, and part of the reason we don’t do that is because of patients having a lot of discomfort with this technique. But the other option is to simply at the time of mastectomy, go in and put the permanent implant in. So there are a variety of different techniques for implant-based reconstruction, but the fundamental concept is the space where the breast was is now occupied and filled with a silicone breast implant.

Another option, and one of our particular areas of expertise, is to use a patient’s own tissue. And as Lola mentioned, you have to have the tissue available. It doesn’t always have to come from the abdomen, but that’s a very common donor site, particularly for patients who are having prophylactic mastectomy because it’s always bilateral and that’s a source of enough tissue to get to the size that would match the patient’s preexisting breast. And effectively what we are doing is replacing the tissue that’s lost in the mastectomy with a very similar kind of tissue.

The fat that exists on the lower abdomen is this loose real or fat in a very similar structure to the fat of the breast. So when we replace like with like, it looks very similar and it feels very similar and it moves very similar. And it is probably the most natural, both appearing and feeling breast reconstruction that’s available, but it comes at a price and that price is additional surgery on the abdomen and the additional recovery.

Now, as early as 2016, we started to realize that the reconstruction isn’t just about the photo, it’s also about the recovery. And particularly with more information coming out about the opioid epidemic that we’ve in some ways contributed to, we started to rethink our surgeries and to come up with ways of doing both implant reconstruction and tissue reconstruction that are far more minimally morbid and minimally painful as the previous techniques.

As Ali mentioned, pre-pectoral reconstruction is where we no longer touch the muscle in breast reconstruction and are able to put the implant in front of the muscle. This is not only a more natural place, that’s where the breast is so that’s where we put the implant, but also doesn’t involve the kind of stretching and discomfort that the expander caused. In addition, we’ve developed, at Penn Medicine, robotic and laparoscopic techniques, as is evidenced in this video that minimize the pain and the recovery associated with the abdominal surgeon.

Suhail K. Kanchwala, MD [37:39]

When we do this robotically, we can make the smallest incision possible. That’s the whole point of the whole thing.

Suhail K. Kanchwala, MD [37:46]

We’ve done many of these surgeries and it’s been really amazing to see some of the innovations that have come out of our center.

When it comes to implant-based reconstruction, this is a typical example of a patient. This is actually a patient who had breast cancer, but very similar to patients having inframammary fold incisions, so incisions underneath the breast, where we’re able to do this and place the final implant, in this case at the same time. So this was a direct implant-based reconstruction, where we don’t leave visible scars on the breast. Here’s another example of a patient having bilateral reconstruction, and again, on the right breast, you can see a little bit of rippling from the implant. But in large measure, this is a patient who really could have had a breast augmentation in terms of the result that we’re able to achieve now.

When we talk about minimally invasive approaches to autologous reconstruction, it’s the same tissue, we’re able to just harvest it in a different manner. Effectively what it does result in a scar, very similar to an abdominoplasty, or tummy tuck, but we’re able to transfer this tissue. And now once this is done, that patient really has no additional follow up for the rest of their lives. This ages naturally with the patient, it moves naturally, and we are also able to reconnect nerves to get an earlier return of sensation, which is a critical concept. It’s not just about how this looks, but it’s also about how it feels. The photograph is one thing, but the experience of this is largely dictated by how it feels postoperatively.

Here’s another example where we’re able to provide a little elevation to the nipple and keep nipple projection without nipple- sparing mastectomy. There’s no way to rebuild a nipple that looks like this. And without it being normal in appearance, it doesn’t meet our goal, which is to again, fool that patient.

Here’s another example. This is one of the earliest examples of a patient where we were not only able to save the nipple but reposition the nipple, and we can now do this all at one time, in one surgery, that allows us to not just reconstruct the breast that the patient started with, but reconstruct a breast that’s arguably a little bit more aesthetic and a little bit more pleasing for that patient to experience.

When I talk to patients about this, we talk about what the goal is. What is the goal? Are we rebuilding what you have? Are we rebuilding something different? And largely we have techniques now that allow us to do all of that but to do it in a way that doesn’t require the kind of recovery that patients have had to have.

This is an example of a patient having surgery at my hospital and you may not see the video because it may not play, but the concept here is, this is after bilateral reconstruction, about 10 minutes, and here’s her audio,

Suhail K. Kanchwala, MD [40:17]

You are about 10 minutes after your free-flap breast reconstruction surgery. How are you feeling?

Patient [40:22]

I feel great. I feel amazing.

Suhail K. Kanchwala, MD [40:24]

How much pain are you in?

Patient [40:26]

Zero pain.

Suhail K. Kanchwala, MD [40:27]

And that’s the point. We want patients not taking narcotics after surgery. And about 80% of the time we’re able to accomplish that goal. And really what I’m collecting isn’t so much photographs of postoperative results, it’s photographs of patients going back, living their lives, able to wear a dress like this if they choose to, and not have to be constantly reminded that they’d had to make the difficult choice of having to have a mastectomy.

So with that, I’m happy to answer any questions and thank you.

Ali Rogin [40:56]

Thank you so much, Dr. Kanchwala.

That is truly incredible seeing that patient emerge from surgery 10 minutes later, just able to speak like that and be in no pain. I wish I could say the same about my experience, however wonderful the results are.

I want to ask you a question that begins with a bit of my story. When I was getting my reconstruction, I wanted to go actually bigger, in terms of the implant size, than my plastic surgeon recommended. And he said, “If we do that, what I’m going to do is, I’m going to stand you up in the surgical theater and we’re going to see if it looks OK. If it does, we’ll use the ones you want. If not, I’m going to put in the ones I want.” I said, “I don’t like that idea of being Frankenstein on the table.”

So I just went with the smaller ones, and I’m very glad they did. They were still a little bit bigger, which I saw as an ancillary benefit to going through this. But I ended up deferring to his expertise.

The question I want to ask is how do you balance your recommendations as an expert in aesthetics, plastic surgery, with the desires of the patient, whether or not that’s going smaller, going bigger, staying the same, whatever the case may be. But certainly you have a trained eye in these things. How do you balance what they want with what you would recommend?

Suhail K. Kanchwala, MD [42:14]

I may be an expert in plastic surgery, I’m not sure I would characterize myself that way, but I am not an expert in that patient’s body. The patient is the expert in that patient’s body. And quite frankly, the point of this is to try and get something that the patient will be happy with.

Now, sometimes what the patient might desire isn’t going to be feasible, and there are biologic constraints. We can’t just do whatever we desire. Patients when they talk and think about plastic surgery sometimes refer to us as artists, and I try and dispel that myth because an artist gets to pick the canvas and choose all the materials. We have to deal with the limitations of the human body.

Factors such as how the blood flow to the skin is, the thickness of the skin, the amount of fat that’s left afterwards, and the amount of padding, the stretchiness of all of that, that determines how large of an implant you can use. It also determines the amount of tissue we can use for the reconstruction.

So there are very real biologic constraints, but there are also other preferences. And within reason, a patient does have a lot of autonomy to make those decisions.

One of the things that I like a lot about the two-stage approach to implant reconstruction, where we put a tissue expander in first, is that a patient gets to experience that size and literally try on sizes, wear clothes that they may wish to wear, try on different bras even, before they commit to the kind of implant that they will have.

One of the issues with direct implant, where we just do it all in one surgery, is then I really do have to make that decision on the patient’s behalf a little bit more. And that’s good and bad, you save a surgery, but that ability to communicate and really understand this is important. It’s not a haircut, it’s surgery to change this out, and we want to make sure we get it right. And the critical part of that is the rapport that we’re able to establish with the patient and that ability to communicate. If we’re not on the same page before surgery, we shouldn’t do surgery.

Ali Rogin [44:17]

Fantastic. I’d like to invite all the panelists to join me back on screen. We have time for a few questions, but we’re going to try to get to as many topics as possible.

First of all, there were a number of questions in the chat about screening protocols following risk-reducing surgery. Dr. Fayanju, maybe this would be best posed to you first, and then certainly if our other panelists wish to weigh in, feel free. But why don’t you take a shot at that one?

Oluwadamilola Fayanju, MD, MA, MPHS [44:45]

So after a person has undergone bilateral mastectomy, they do not need any more mammograms. They do not need any more MRIs, which for many women that’s considered a side benefit of undergoing bilateral mastectomy.

That being said, you do typically get, if you have implants, a bilateral breast MRI every 5 years. But that MRI is not protocolized to look for cancer. It’s protocolized to look at implant integrity. That being said, MRIs are very sensitive tests, and not infrequently they might catch something that might be seen not only in the breast but elsewhere in the chest as well as the upper abdomen at the time of the particular scan. Some people find some peace of mind coming from that MRI being done, but that’s not the purpose of that MRI.

But if you have autologous reconstruction, typically you’re not getting any type of breast MRI or chest imaging, cross-sectional imaging, unless ordered for other reasons. So after mastectomy, you’re mammogram free, which a lot of people are very happy about.

Suhail K. Kanchwala, MD [45:46]

My favorite thing, I just want to interject one thing. My favorite thing is when a primary care doctor postoperatively orders a mammogram for a patient. Because that means that primary care doctor believes the patient has breasts and then we’ve won.

Ali Rogin [46:02]

That’s great. I love that.

A number of people were asking, once you’re at a certain age, is it still appropriate to pursue prophylactic surgery if you haven’t been diagnosed, or even get tested for a series of genetic mutations.

Perhaps, Angela, that might be territory for you. And then doctors, sorry, Suhail or Lola, if you went weigh in on that as well. But I think it’s interesting this idea of, you know, is there a certain age at which a declining relationship between testing, surgery, surveillance?

Angela Arnold Ross, MS, LCGC [46:38]

Thanks very much. Yes, that’s a very good question. Your genes are your genes from birth. So by testing, you know, it doesn’t matter what age you test, you’ll either find something if it’s there or you won’t. The question is what other benefits are you going to get out of it at that age?

Depending on the age, really depends on the answer to that question. If you’ve aged out of screening, you might not be recommended to do any screening. And again, very individualized about whether you want to have surgery. I’m sure my wonderful colleagues here will talk about that.

You know, it might be an age where it’s really too risky to go through surgery, so on and so forth. From the genetics perspective, a lot of people do testing later in life because of their family. Their family members ask them to, and it’s not unreasonable to do if it’s covered by Medicare or if it isn’t, genetic testing is much cheaper now than what it used to be. So it’s all about the information and the age really in a way doesn’t necessarily matter. But then it may not necessarily affect the individual, depending on how old that person is. Does that make sense?

Ali Rogin [47:42]

It does. Suhail or Lola, would you like to also weigh in from a surgical perspective?

Oluwadamilola Fayanju, MD, MA, MPHS [47:47]

Yeah, so I think it is interesting that for BRCA mutation carriers who have triple-negative disease, it is also important to get genetic testing because there are treatments, specifically a PARP inhibitor that, if a person is found to be a BRCA mutation carrier, can be used in the treatment of triple-negative disease. There’s actually a therapeutic benefit to people who have a particular mutation if they’re found to also have cancer. So that’s one reason, from a personal perspective, someone should get genetic testing. From a familial perspective, as Angela already mentioned, it’s important to be able to inform the genetic risk of your family members.

As to whether someone should pursue prophylactic, or risk-reducing, surgery at a later time. It is an interesting question. We do see that in families, and again, Angela can speak to this probably better than I can, that sometimes there is an acceleration of the age at which someone is diagnosed with a particular cancer that maybe in one generation it was diagnosed typically in people among their 60s and the next generation it’s in their 50s, next generation it’s in their 40s. So again, a reason why it’s important ideally for families to be followed, not just as individuals, but as a group, which is what we do at Penn. There are families who are seen by our team.

It means that we can kind of look at you holistically and say, OK, given not only who you are as an individual, but who your family is, what makes most sense for you. If you are a family that has a BRCA1 mutation, but everyone was diagnosed in their 80s or their 70s, which occasionally happens, risk-reducing mastectomy at 65 may not be the most reasonable. It’s not clear. But if you’re someone in whose family everyone was diagnosed in their 30s, then it’s much more important for you to be getting a risk-reducing mastectomy at a young age, starting screening at a young age. And so again, familial context is really, really important for guiding these types of decisions.

One important caveat is that Medicare, I believe, does not pay for contralateral mastectomies for people who have a known cancer after the age of 65. But the good news is breast reconstruction is covered by the government. By law, if you have cancer or if you have a known genetic mutation that puts you at risk for cancer, it is highly likely to be covered by insurance. We have financial navigators who can work with you to develop a payment plan if there’s any question about that whatsoever.

Suhail K. Kanchwala, MD [50:07]

And the only thing I’ll add to that is that sometimes, and there’s so much nuance to all of these things, but sometimes the reconstruction choice can make genetic testing more important.

For example, a patient with a unilateral breast cancer is contemplating just having a unilateral, one, reconstruction. If they’re using tissue from the abdomen, for example, that’s a limited resource, and we often will recommend they get tested because if they are positive and they choose a prophylactic mastectomy on the other side, we want to know that before we commit to using the abdomen. So there’s a whole lot of nuance here.

Ali Rogin [50:41]

We’re running out of time quickly, but I do want to get to one other topic that came up in multiple questions. And this I think is really a question for Suhail: Does BMI factor into decisions about what type of reconstructive surgery, whether a person can do flap surgery. And also some folks were asking about fluctuations in weight. Would that affect the breast if somebody does undergo a flap surgery, or an autologous surgery?

Suhail K. Kanchwala, MD [51:13]

Yeah, flap surgery is fine.

One of the things about having the kind of volume and experience we have is that we’ve actually published on the impact of BMI on breast reconstruction. It’s complicated, but I’ll just mention a couple brief things.

If a patient is at the higher end of BMI, surgical complications of all kinds increase. After a BMI of about 40, at least in our center, the complications from the abdomen definitely increase. But after a BMI of 40, there’s a limit to the size of implant that a patient can have. The largest manufactured implant, sometimes it’s too small for a patient.

It’s an individualized discussion, but BMI certainly does impact both the availability of tissue and at the higher end of BMI, it can impact surgical complications. So that’s one.

In terms of weight fluctuations, after surgery the body doesn’t recognize that we’ve moved the tissue. It still behaves like the abdomen even though it looks like a breast. And so if a patient is one where their storage areas are on the abdomen and they gain weight postoperatively, they often will gain weight in their breast first. And if they lose weight, is that the first place where they lose weight on their abdomen? Well, then the breast will lose weight and deflate similarly. Typically, it’s large fluctuations in weight that cause that to happen.

Ali Rogin [00:00]

Thank you so much to all three of you, Angela, Suhail, and Lola, for participating in this fantastic conversation. I know I’ve certainly learned a lot and I thank all of the viewers this evening for joining in and asking fantastic questions.

I also want to thank again our sponsors for their generous support of this program: Abramson Cancer Center at Penn Medicine, Basser Center for BRCA, and Restore Penn Medicine Center for Advanced Breast Reconstruction. And our promotional partners FORCE, BRCAStrong, and Sharsheret.

I want to ask all of you to check out LBBC’s private Facebook support group for high risk. And if you have been diagnosed with breast cancer, there is a support group for all ages, all stages, and a young women’s support group.

For trusted information, please again, visit LBBC.ORG, and if you have not already, please join our mailing list so we can let you know about future programs like this one.