Triple-Negative Breast Cancer Diagnosis and Treatment

Dr. Marisa Weiss: Thank you all for joining us about this important presentation, this webinar on triple-negative breast cancer. I'm a breast cancer survivor and a breast cancer doctor, and I've been in the hot seat. I call myself the dual citizen, and I know it's overwhelming to hear the words, "You have breast cancer." But after the initial shock fades, it's time for action, time to understand treatment options, and time to make a plan with your doctor.

For people with triple-negative breast cancer, being diagnosed with this subtype of the disease means there may be unique challenges in charting a treatment path, especially if the cancer is metastatic, which means it's spread beyond the breast and the nearby lymph nodes. Going through breast cancer and dealing with triple-negative breast cancer can be frustrating and isolating, but there is hope for new and better options.

As you know, breast cancer is defined by three markers, estrogen receptor called ER, the progesterone receptor called PR, and human epidermal growth factor receptor two called HER2. If these receptors are present, they're called positive. In contrast, if there's no receptors for these three things, ER, PR and HER2, it's called triple-negative. And today, we're going to talk about why triple-negative breast cancer, aka, TNBC can be more aggressive and harder to target in treatment, and why it's important for your doctor to evaluate TNBC based on a variety of key characteristics, and not just view or treat the cancer with a one-size-fits-all approach. We'll discuss how researchers have made progress with targeted therapy and the goals for ongoing studies to help people with TNBC.

First, I want to thank our generous sponsor, Gilead, for making this event possible. Thank you so much for your continued support of Breastcancer.org. We have an incredible lineup of speakers today to share their insights and expertise. First, we'll hear from inspiring author and breast cancer advocate, Maimah Karmo, who is the founder of Tigerlily Foundation. She's a TNBC survivor who was diagnosed at age 30. Maimah has served on the federal Advisory Committee on Breast Cancer in Young Women, and as a global health advocate, she fights for policies to help people with breast cancer.

Then we're honored to be joined by doctors Roberto Leon-Ferre and Dr. Evelyn Taiwo Dr. Leon-Ferre is a breast oncologist who leads the Mayo Clinic Triple-Negative Breast Cancer Working Group. His research focuses on how to better personalize treatments for the best outcomes, along with the least side effects, and find new ways to use the immune system in cancer treatment. Dr. Leon-Ferre received a 2024 ASCO Conquer Cancer Advanced Clinical Research Award for his work on TNBC, which we'll hear about today.

Dr. Taiwo is an oncologist at New York Presbyterian Brooklyn Methodist Hospital where she treats people with breast cancer and hematologic disorders, disorders of the blood. She's also associate professor of clinical medicine at Weill Cornell Medical College. Dr. Taiwo's research includes studying cancers in patients from urban and minority populations. She has won several awards in recognition of her commitment to her patients and to public health education.

Then we'll talk with Kelly Thomas, who's a breast cancer advocate and founder of TNBC Thrivers. She was diagnosed with TNBC seven years ago at age 33. Kelly is doing amazing work to grow a community on social media too, as she says, "Make TNBC feel a little less lonely." Thank you all for being here today.

Before we welcome our guests, I want to share a quote from Tiah, who was diagnosed twice with TNBC. "When I was first told that my cancer was triple-negative, I was relieved because I didn't have to be on maintenance meds for the next 5 to 10 years, all those endocrine therapies. At the time, I didn't realize that TNBC was one of the more aggressive forms of breast cancer. I had to learn why TNBC is different and teach my friends and family about what I was dealing with."

Her reaction captures the experience of a lot of people when they first learn of a TNBC diagnosis. I hope everyone in the same situation gives themselves grace as they navigate a new normal. Now I'm thrilled to introduce our new friend. Our new friend, actually, she's been around for a long time with us.

Maimah Karmo: I'm an old friend.

Dr. Marisa Weiss: You're an old wonderful friend, Maimah Karmo. Welcome, Maimah.

Maimah Karmo: Thanks for having me. Dr. Weiss.

Dr. Marisa Weiss: Thank you so much for being here. Let's start with your story of being diagnosed with breast cancer. When were you diagnosed and how did it impact your life at that time?

Maimah Karmo: So I was 32 years old. And first of all, I'm so blessed to be getting older, because I didn't know I would live to be this age. I'll be 52 this year and never imagined I'd be thrilled to be saying, "I'll be 52 this year." At 31, I found lump with my breast while taking a shower. And my mom's a nurse and taught me breast exams when I was younger, but never imagined, never thought about cancer, things like about cancer when they're young, right? You're living your best life and just doing what you got to do.

And there's this lump there, and saw my doctor and they told me that I couldn't have breast cancer, that I was too young, to come back when I was in my late 40s or early 50s, and I was just 31 years old. I had to push for mammography. It came back clean and they said, "Well, Maimah, all the guidelines, all the things say that women don't get breast scans at your age. You're fine. What's the problem? Your mammogram is clean." I said, "Well, this lump is still here and it can't see what I can feel, so the scan must be wrong." And I kept pushing for a biopsy. After almost a year, I got a biopsy and it came back. I remember the day February 28th, 2006 at 4:44 PM, and I have a tattoo on my arm, it has 4:44.

Dr. Marisa Weiss: Wow.

Maimah Karmo: You can't see it because of the blur, but my doctor called my office phone and my cell phone, she kept calling my phones and she said, "You have breast cancer." And it was triple-negative breast cancer. I don't know why this series really hit me because know, triple-negative breast cancer is so aggressive, and at the time there was no treatment targeting TNBC at all. And they were like, "Well, we're going to give you all that we have with treatment, but there's nothing to treat your subtype of cancer."

Not only that, I understand subtypes and treatments and all the things, all the words, but all I heard was that, "We can't treat your cancer, that it's highly aggressive. It will probably come back. People don't survive this kind of breast cancer." And my daughter was only three years old. And I'm saying this because I'm just so thankful that there are more treatments out there, like what Gilead has for patients. But imagine being at the prime of your life and then hearing that you probably will die because you got dismissed by the healthcare system, you got delayed in diagnosis, and nothing's targeting your breast cancer subtype.

Dr. Marisa Weiss: Wow. Were you already familiar with that type of breast cancer, triple-negative, at the time of diagnosis?

Maimah Karmo: I had no idea what breast cancer was. All I heard about was pink walks and runs, and feathers and boas and balloons, and no one talked about what breast cancer really was. So I was totally uneducated about anything. Breast cancer. I didn't know what an oncologist was or a surgeon was or who treated what. I didn't know what mutations were. I didn't know about biomarkers. I knew nothing about anything.

So I was being deluged with all this information while raising a three-year-old child who was potty training, and trying to work and figure out treatment options. And all I kept hearing people would say, "Oh my God, I'm so sorry. Oh my God, I'm so sorry. Oh my God, I'm so sorry." And that's where it was. And I found a surgeon. I went through three surgeons. The first person said, "Just cut your breasts off." And the other one said, "Well, you poor thing, we'll just do the best we can with you."

And I found one doctor that I was in her office and I had my knees under my chin. I was just sitting there shaking, and she walked in, she had these beautiful hazel eyes, and she looked at me and she just pulled her chair next to my chair, and she put her hands out and she said, "Hold my hand." And I was just like this, shaking. And she said, "Hold my hands." And I remember being so scared, and I finally pulled my hands out and she said, 'Just breathe. I got you, and I'll do everything I can to make sure that you live. I'll do whatever my power it takes to figure out how to keep you here." And we just talked and talked. And we're done talking, my feet were on the ground, and she's still my doctor today.

Dr. Marisa Weiss: Amazing. That's an amazing story. And thank goodness you found your voice and spoke up to advocate for yourself. Look, you have so much at stake and you still do. You're a young woman with a three-year-old, and yet you followed your instinct. I bet your mother being a nurse gave you more confidence to find your voice. Is that the case?

Maimah Karmo: Well, she did. She did because she taught me breast exams, but I'm from West Africa. And so I'm not only Black, but I'm African Black, so we don't discuss a lot of things. So the thing was she empowered me to know my body and she gave me life and saved my life, but she said, "Don't talk about it. Don't talk about this. It's a woman's issue, I don't want it talked about." So, I went on the news and-

Dr. Marisa Weiss: Oh, you went on the news, and then-

Maimah Karmo: And then I went to churches and I went everywhere. I got into Essence Magazine, Good Morning America. And she's like, "I told you don't talk." And it was everywhere, but I feel like-

Dr. Marisa Weiss: And you're here today, and then you started Tigerlily. Tell us what inspired you to start Tigerlily and its mission.

Maimah Karmo: There's a quote by Wayne Dyer I love. He says, "When you squeeze an orange, what comes out? When an orange is squeezed, what comes out is what's inside. So when you're squeezing life, what comes out is who you are." And I remember sitting there laying in bed one day after treatment, and I lived near a path and there was a baby that was laughing. And I heard the baby laughing and I thought, "This baby could be a girl and she could never know what could happen to her at some point in her life. Her mom may never know what's the risk. My daughter's life is at risk. I could sit here at my bed and just be sad and be distraught and be overwhelmed, but if I do something, somebody else might have a better outcome than me. Someone else could live, someone else could have hope."

There were no young adults, nobody my age who had breast cancer, my stage, my subtype, nothing. I felt so alone. And so I asked God to... oh my God, it's 4:44. Look at the time, 4:44 now. I asked God to give me the grace to start something, to help people go who looked like me, who were like me, and to use my voice to speak up, and that's where I began Tigerlily. Long treatment, getting chemotherapy during that time. And everyone said I was crazy. They said, "You're sick. Why would you begin a nonprofit when you're a young single mom?" And I said, "Someone needs to hear this message. Someone could have a better outcome, someone could live." And I had a full-time job. I had no funding, no sponsors, no nonprofit at time,

Dr. Marisa Weiss: No time.

Maimah Karmo: I had no time. And I didn't know if I would live, but if my life would save someone else's life, one person's life, then it would be worth me sharing my story. So I spoke at a church first, and I never imagined that I would've done what I've done now. So I tell people who were diagnosed, "Just pray to God, whoever you believe in, and ask, 'How can I serve and use your voice?' Speak up and often."

Dr. Marisa Weiss: Wow, you're such an inspiration.

Maimah Karmo: Thank you. Thank you.

Dr. Marisa Weiss: Oh, thank you. We've enjoyed working with you, and together we've reached more people with greater impact. But how can people participate in Tigerlily's programs?

Maimah Karmo: The website Tigerlily, TigerL-I-L-Yfoundation.org. And I'm @maimahkarmo on Instagram, on TikTok, on Twitter, and on LinkedIn.

Dr. Marisa Weiss: Wow. Well, thank you so much, Maimah, and we look forward to working with you and helping you fulfill your mission to help more people in such important ways. You are godsend. You really are. You're a blessing. I'm

Maimah Karmo: I'm blessed and I'm paying it forward. Thanks for having me.

Dr. Marisa Weiss: Oh, thank you. Thank you. Thank you. Now it's our honor to bring on Dr. Roberto Leon-Ferre and Dr. Evelyn Taiwo. Dr. Taiwon, let's start with the basics about triple-negative breast cancer. What does the name of this subtype mean and how would someone know if they have it?

Dr. Evelyn Taiwo: That's a great question. Well, first, thank you for having me here. I'm always excited to talk about breast cancer. There's so much progress that's being made. So it's not all doom and gloom when the conversation is about triple-negative breast cancer. So you did mention this earlier, that when there's a diagnosis of breast cancer, there are certain receptors, proteins, if you may, that we check for.

There are three receptors, the estrogen receptor, progesterone receptor, and the HER2 receptor. And these receptors tells us what protein is essentially driving the tumor. So when we say a triple-negative breast cancer, it means those three receptors are absent in the tumor, which is partly why this ends up being a somewhat more difficult disease to treat, because we don't necessarily have targets. But that's a simple definition of a triple-negative breast cancer. It's missing estrogen, progesterone and HER2 receptors that are ways of categorizing and subtyping breast cancer.

Dr. Marisa Weiss: It's sort of like if you don't have eyes or ears, you can't listen or see something, but you can find other ways to get the message. And that's what I know your work has been with triple-negative, is that you have to find other ways to address this type of cancer to effectively treat it.

Dr. Evelyn Taiwo: Exactly.

Dr. Marisa Weiss: Yeah. Dr. Leon-Ferre, what can make triple-negative breast cancer uniquely challenging to treat? And why can it be an aggressive type of breast cancer? What makes it that way?

Dr. Roberto Leon-Ferre: Yes, thank you. And Dr like Taiwo, it's a privilege to be here and to participate in this forum. So, as Dr. Taiwo just mentioned, and you alluded to, the main challenges that we define the disease by what it lacks, right? So I tell my patients it's kind of like being diagnosed with a heart condition and being told that you do not have a heart attack, but what do we actually have and what are we actually dealing with? So that's been challenging, and this is partly why traditionally we have not had treatments specifically designed for triple-negative breast cancer, other than chemotherapy, which is a non-targeted therapy specifically. And that has made it more challenging to identify more optimal treatments that can be more personalized.

And the good news is, however, that that's starting to change and we're starting to have a much better understanding of the biology of triple-negative breast cancer. We've started realizing that it is not a single disease. It's actually a collection of diseases that have different behaviors and also thankfully different weaknesses that we can exploit. So even though the cancer doesn't have the hormone receptors or the HER2, there are other markers that we're starting to realize can help us getting a better idea of who might respond to a better treatment, for example, immunotherapies and so on.

Dr. Marisa Weiss: Absolutely. We've come a long way, thank goodness. Right? Dr. Taiwo, can you explain who is most commonly diagnosed with TNBC, and talk about the racial disparities that can affect access to treatment, the side effects you may experience, and outcomes, how long you live, survival?

Dr. Evelyn Taiwo: Well, so triple-negative, the hormone receptor types of breast cancer are the most common, make up about 65 to 70%. And in the general population, triple-negative makes up about 10% of breast cancer subtypes. However, in specific groups of patients, so Black women tend to have triple-negative at a higher rate than white patients. So it's about 20% compared to the 10% of triple-negative breast cancer that we see in the general population.

So in terms of the disparities that exist, I think it's pretty similar to the infrastructure that exists in our society, whether it be economic, so access to care, we'll talk about poverty rates. We know patients who are poor, patients who are less educated, generally have worse access to care. So there's that, but then I think there's also the understanding that, like Dr. Leon-Ferre mentioned, that triple-negative is not one disease type.

And so we do know triple-negative in Black patients compared to, say, white patients, and just women of color regardless of your socioeconomic status, it's very likely if you're a Black woman with triple-negative, you're going to do worse than your counterpart. And we know that has to do with the biology of the disease. There's lots of research that's ongoing right now looking at triple-negative in women of color, how it's different, what drives the tumor.

So there's definitely the social determinants of health. We know that you have higher rates of obesity in communities of color. Those are things that increase the risk of breast cancer. And so those are contributing to disparities, poverty, education, like I mentioned, biases that exist, trust and mistrust in the healthcare system. But there are disparities that exist because of the biology of the tumor that we need to figure out how to narrow those disparities as we're talking about social determinants of health.

In terms of who generally gets triple-negative breast cancer, it tends to be younger women. The average age for breast cancer diagnosis is about 62. For triple-negative, it tends to be about age 53, 54. So these women are generally younger, when they're in their prime. So, as it pertains to disparities, I think part of it has to do with even understanding the disease in communities of color. When you look at some of the research that's been done in how we manage triple-negative breast cancer, the women who are predominantly or most affected by the disease are generally not represented in a lot of the clinical trials that are happening, so we don't understand the disease in this patient. And I think some of that is contributing to the disparities.

Dr. Marisa Weiss: Absolutely. And just like Maimah's story, when she spoke up as a young woman, they were dismissive and said, "Oh, no, no, no, no, you don't get breast cancer," but Black women are more likely to get breast cancer at young ages than white women are. And also when Black women ask for genetic testing, which is really important, someone with triple-negative breast cancer, they're also more likely to be dismissed and say, "Oh, no, no, no, you don't really need that."

And then they're also other disparities, societal disparities that are sort of rampant, really everywhere that can really get in your way. We did a whole thing about the cost of care and how just getting into the system to get evaluated, diagnosed can take a lot. You're a single mother with a three-year-old like Maimah was, she had to juggle a lot to get in there and to be taken seriously.

And these stories are shared by people. And so that, as you were saying, the trust may be thin or not there. And women of color are less likely to be invited to participate in a clinical trial. And Dr. Taiwo, I know we're about to discuss TNBC research, for which clinical trials are essential. Why don't you just say why is it so important to increase representation of Black women and Hispanic women in clinical trials, particularly for TNBC?

Dr. Evelyn Taiwo: Generally, when you think about clinical trials, they are the mainstay of development and validation of new cancer therapies. So regardless of the patient group, to understand the disease, to understand what therapies are effective, you need to do clinical trials that are representative of the people who are affected by the disease. Unfortunately, right now, less than 1 in 20 patients participates in clinical trials.

So, in terms of what needs to happen, besides the fact that we have to, number one, deal with biases that exist between the healthcare community, doctor biases, we need to do a lot of community outreach. Community engagement, it's absolutely important to include women of color in triple-negative breast cancer trials. Number one, they're disproportionately affected by the disease twice the number of other women who are diagnosed with triple-negative breast cancer. We know that their outcomes tend to be worse.

So understanding the disease in the patients that are affected by the disease I think is absolutely important, particularly now we're talking about personalized medicine in terms of how we treat cancer, targeted therapy, immunotherapy, a lot of that has to do with your genetics and how you respond to triggers and antigens. And not including a diverse group of patients in this clinical trials, I think somewhat nullify some of our findings if we're not representing our demographic.

Dr. Marisa Weiss: Absolutely. And Dr. Nadine Barrett, her research led to the Just Ask Program that was shared by ASCO and ACCC. Basically, the idea is if you just ask each person to participate in a clinical trial, they're going to participate at the same rate, but there are biases, as you said, where women of color less likely to be asked. So we do need to make sure that everyone is just asked to participate in clinical trial. So, everyone joining us today is eager to hear about advances in goals in treating TNBC. Dr. Leon-Ferre, let's talk about immunotherapy. What is immunotherapy and how is it currently used for TNBC, and for whom is it most effective?

Dr. Roberto Leon-Ferre: Yes, thank you. Well, immunotherapy is certainly one of the most exciting advances in the treatment of cancer in general, including breast cancer, but not limited to breast cancer. When we talk about immunotherapy, we're talking or we're referring to a type of medication that doesn't directly treat the cancer itself, but rather it's helping the person's own immune system to recognize and fight the cancer. So the medication doesn't attack the cancer directly, but indirectly it helps boost those responses against the cancer.

So just like our immune system is trained to recognize and defend us from bacteria or viruses that cause infections, the immune system is also able to recognize and go after cells that become abnormal, that become cancerous. The challenge is that cancer cells can look very similar to our own normal cells in certain situations, and the immune system sometimes is not able to recognize that something wrong has happened to that cell.

So I tell my patients many times, I use an analogy, I tell them it's kind of like if you think about the security at the airport, the security officers at the airport that are checking your documents to decide if they can let you in and board the plane. Well, our immune system is like those security officers at the airport that are screening everything that enters our body to try to see if they belong there or not.

And cancer cells are supposed to acquire certain changes and perhaps have invalid documents, if you will, and they should be able to be recognized by the immune system. But unfortunately, triple-negative breast cancer and many other cancers are able to re-express certain markers that they should have lost and that perhaps fool the immune system into thinking that they're normal. Well, immunotherapy, one of the main targets is to try to strip away one of those signals that fools the immune system into thinking that those cancers belong in our bodies.

So that's the main way it works. And at this time, it's used for many patients with triple-negative breast cancer that has spread to the lymph nodes, and it's limited to the breast and lymph nodes. So we usually add immunotherapy to chemotherapy, specifically for patients with stage two or three triple-negative breast cancer. And that improves the likelihood of achieving a complete response to the treatment. And also, it has been shown to increase the odds of cure.

In metastatic triple-negative breast cancer, it's also available, but we have learned that in that particular situation, immunotherapy is only effective if the cancers express a protein called PD-L1. And if the marker is not present, it's less likely that immunotherapy may offer anything additional than the chemotherapy, other than potential side effects. Now, it's also exciting to see that there are studies that are showing that immunotherapy can also be effective in hormone receptor-positive breast cancer, but this is not yet routinely used, and still more research is needed in that space before they become approved.

Dr. Marisa Weiss: Is one takeaway to ask, for people who have metastatic triple-negative breast cancer, to make sure that they've been tested, the tumor's been tested for PD-L1?

Dr. Roberto Leon-Ferre: Absolutely. I would say that that's standard. It should be part of the routine testing, particularly at the first diagnosis of metastatic triple-negative breast cancer. So, we have also learned that immunotherapy in triple-negative breast cancer tends to work a lot better when it's used earlier in the disease continuum. So, definitely most facilities would test a PD-L1 upon first diagnosis. But to clarify, just in the metastatic setting, patients that have early stage disease that can still be treated with surgery, we have found that for reasons that we still don't understand very well, immunotherapy seems to work regardless of whether the PD-L1 is present or not.

Dr. Marisa Weiss: Okay, thank you. And as a follow-up, Dr. Leon-Ferre, can you tell us about your research on a type of immune cell called a tumor-infiltrating lymphocyte, or TILs, and what you've learned about a link between TILs and a lower risk of TNBC recurrence? And I want to be sure everyone understands that measuring TILs is not typically offered as standard of care everywhere. It's something that's relatively new, but it's an important discovery that you've helped contribute to.

Dr. Roberto Leon-Ferre: Yeah, certainly. Thank you. Well, we have known for some time, as I alluded to earlier, that the immune system is able to recognize some cancers more effectively than others. So in the case of breast cancer, we have known for quite some time already that triple-negative breast cancer is the subset that is more readily recognized by the immune system. And this may be why immunotherapy is more effective in triple-negative than in other breast cancers.

So a relatively simple method of trying to get a sense of whether the immune system is actually recognizing breast cancer tumors is to actually go to the tumor and look for the presence of cells of the immune system in the tissue that can be measured either in biopsies or in tumors that are removed at the time of surgery. So those immune system cells are called lymphocytes. Those are the normal, the cells that normally fight infection and also cancer. And when we see lymphocytes in the tumor, we call them tumor-infiltrating lymphocytes, or TILs for short.

So, pathologists are able to estimate the amount of immune cells in the tumor. As you mentioned, this is not yet routinely done in practice, but still as part of research. And there has been a lot of research over the last decade or so that has shown that triple-negative breast cancer tumors that have higher levels of these immune cells, of these TILs, tend to have a better prognosis, and also tend to respond better to our treatments, including chemotherapy and immunotherapy. And that may be partly due to the fact that the immune system is already helping attack the cancer, alongside with our current treatments.

What we've found to be exciting recently is that now we have evidence that high TILs are associated with a much lower risk of recurrence in patients who have very early stage breast cancer, so stage one triple-negative breast cancer, and that it may be possible in the future, if additional research confirms this, that a subset of these patients may actually be able to avoid chemotherapy altogether, or at least receive a less intensive chemotherapy regimen and perhaps have less side effects without compromising the likelihood of curing the disease.

So as I mentioned, more research is needed before we can fully make decisions based on TILs. That includes spreading the knowledge and how to assess for this amongst the pathology community. But more importantly, we need clinical trials that test whether making decisions based on TILs can indeed be associated with a more favorable outcome. And those trials are currently being designed and ongoing.

Dr. Marisa Weiss: Great. And for people who are listening, ask your doctor, is there a clinical trial that you may be eligible for and can you learn more about it? And you can meet with the clinical research coordinators that work in the hospital that have a whole list of the portfolio of clinical trials that are available. And by the way, we will email everyone a link to the article that on the study that Dr. Leon-Ferre contributed to. So, that's also exciting to hear about. Dr. Taiwo. What should people know about genetic testing for and the use of PARP inhibitors?

Dr. Evelyn Taiwo: Yeah, it's a great question. When we're talking about triple-negative breast cancer, every patient with triple-negative breast cancer, regardless of stage, should get genetic testing. That's now standard of care. We had age cutoffs at some point, but it's now standard of care. It's NCCN guidelines. Your insurance company should cover it. Everyone with the triple-negative breast cancer should get genetic testing. Not only is it important to know what your germline mutation is, we're using the findings to make decisions about how to treat patients, not just prophylactic surgeries to prevent cancer, but to actually treat patients who've already been diagnosed with breast cancer. Now, most patients with triple-negative breast cancer will not have a genetic or breast cancer susceptibility mutation, but on average, about 10 to 15% of patients do, and 30% of Black women and Ashkenazi Jewish women will have a genetic abnormality that's predisposed them to this cancer.

So having a BRCA1, BRCA2, or even a PALB2 mutation, I know we talk about BRCA1 and 2, those with the most common types of genetic abnormalities, predisposing to breast cancer. There's a whole bunch of them. There's PTEN, there's BARD1, but we talk about BRCA1, 2, and PALB2 because we have data, very good data supporting the use of PARP inhibitors in patients who have those mutations, whether it's in the metastatic setting in breast cancer that has spread. Or in patients who are high risk, who've gotten chemotherapy before surgery and have residual cancer at the site of the tumor, we're recommending PARP inhibitors.

And PARP inhibitors are really, just to simplify what they are, they're proteins in PARP, they're proteins involved in DNA repair. It allows tumor cells to repair themselves and keep proliferating. PARP inhibitors are targeted drugs that target that PARP protein to prevent the cancer from being able to repair itself and progress further. So yeah, the one important thing everyone should take home is that everyone with triple-negative breast cancer should get genetic testing.

Dr. Marisa Weiss: Absolutely. Amen. And the thing is, is that genetic testing isn't such a big deal. It's really, our hospital, you meet with a genetic counselor and you give your consent, but then you provide either swish and spit into a vial or it's one tube of blood to get the genetic test. It's not real a fancy test or anything like that, but you do want to get it so that you can know the best treatment for you.

A lot of people say, "No, no, no, no, I don't have any kids," or, "I'm too old. I don't need genetic testing." No, no, no, no, no. It helps us get much smarter about how to take the best care of you and how to follow you after you've been treated. So really speak up and get pushy about asking for genetic testing if you've been diagnosed with breast cancer, especially if you were diagnosed with a triple-negative type of breast cancer, Dr. Leon-Ferre, a newer type of targeted called antibody drug conjugates, I don't know why we come up with these fancy terms, is helping some people with TNBC. How does it work and who can try it?

Dr. Roberto Leon-Ferre: Yes. No, following immunotherapy, I think this is one of the most exciting developments in oncology. Antibody drug conjugates, as the name suggests, is a mix between an antibody and a drug. So, an antibody, as many in the audience may know are proteins that your own body makes to fight infections, and each antibody usually has the ability to attach to a particular protein or a particular part of a bacteria or virus. But in this case, the advance has been that the antibodies have been modified in the laboratory so that they can attach to a particular part of a tumor cell, protein present in a tumor cell that perhaps is more present in the cancer, but less present in the normal tissues.

We have had many antibody-based drugs like Herceptin or Trastuzumab for HER2-positive breast cancer, but the innovation is now that these antibodies have been modified so that they can carry with them a small amount of chemotherapy, and that allows to deliver the chemotherapy more specifically to the cells that have that marker, so they can concentrate the chemotherapy in the tumor. So I tell people it's kind of like smart chemo, like a directed missile that goes specifically where you program it to go.

So in breast cancer, we have two classes of antibody drug conjugates that are already available. This class has target either HER2 or a protein called TROP2. And what is new is that even though in the past we talked about HER2-positive breast cancer as being the only type of cancer that benefited from drugs in that category, what we have learned is that with these new drugs, even very low levels of HER2, that would've been considered negative, so a subset of patients with triple-negative breast cancer actually may have a small amount of this HER2 protein, these drugs could be effective also in that context.

There are currently several antibody drug conjugates that are approved for patients with metastatic breast cancer. So at this time, a standard of care is only in the metastatic setting. There are four that are approved. There is three of them that are available for hormone receptor-positive breast cancer. You talk about the names, it's very complicated names, one is sacituzumab govitecan, trastuzumab deruxtecan, and datopotamab deruxtecan. And then two of them are available for triple-negative breast cancer, and then two are available for HER2-positive breast cancer. In addition to trastuzumab deruxtecan, there's an older one called T-DM1 or trastuzumab emtansine that we have been using for several years.

Dr. Marisa Weiss: Right. All these fancy names, but it's important to know about them and ask your doctor, "Okay, so I've got a situation that's where it's spreading, it's in other parts of my body. What are the new forms of treatments that might benefit me?" Dr. Taiwo, TNBC vaccine study headlines have gotten a lot of people excited. Although a vaccine is still in the very early stages of development, what's the hope for a vaccine use in the future? The immediate future? Soon?

Dr. Evelyn Taiwo: Yeah. No, I think everyone's excited and waiting to see what the studies are eventually going to show. I think a lot of the studies right now are obviously phase one studies, and you're looking at toxicity, you're trying to figure out the best dose, which are what phase one studies are. But vaccine studies are essentially trying to replicate what immunotherapy is doing, which is basically create a vaccine that targets a protein that the triple-negative breast cancer or the cancer itself is making.

So right now, they're looking at lots of vaccine trials in triple-negative breast cancer, patients who've already been diagnosed. They're looking at studies in patients who have a high risk of breast cancer because they have a BRCA1, BRCA2 or PALB2 gene mutation, looking at creating vaccines to target those mutations. Then they're looking at vaccines to target patients who've already been diagnosed who are metastatic or who've been diagnosed and high risk of recurrence.

So there are going to be different types of vaccines. And I guess the most effective would be the vaccine that leads to response that's targeting a protein that the tumor is making. We're not going to have any answers or results. You start off with the phase one studies, then you go to phase two studies. But I think it's very exciting to have studies that are looking at targeted therapies in triple-negative breast cancer. But yeah, I think it's understanding the vaccines are basically giving to you to allow your body form inflammatory responses to these antigens that you've been exposed to, and cancer is technically an antigen, because not normal to be in your body.

Dr. Marisa Weiss: Right. An antigen is something that is not supposed to be there.

Dr. Evelyn Taiwo: Exactly.

Dr. Marisa Weiss: Yeah. Okay. Now, when people register for this conference, the overwhelming question was, "What can I do to reduce my risk of this ever coming back? And what lifestyle changes can I make to avoid recurrence?" I'll ask you each your advice. Dr. Taiwo, you want to go first on what you tell your patients about this?

Dr. Evelyn Taiwo: Yes. I think we know some of the risk factors. Risk doesn't mean cause. It just means it increases your risk. So besides getting the standard of care, whether that's surgery, chemotherapy, and whatever else, we are an obese country. And so, I think number one, in the post-treatment phase, a lot of conversation surrounds about weight loss for patients who are overweight or obese. We know being obese, it creates an inflammatory response in the body, which can increase the risk of cancer. For patients who are smokers, I recommend the stop smoking. For patients who drink or heavy drinkers, now the Surgeon General has recommended that any alcohol is bad for you.

You figure out what's appropriate for you. But generally, for patients who drink more than one drink a day, we generally recommend, I recommend that they reduce the amount of drinking they're doing. Exercise, physical activity is a huge one. Being physically active is good for the body. It's good for responding to inflammatory processes. So those are the main risk-modifying behavior that I think patients can take on as a way of just taking ownership and being proactive about ways of reducing their risk. And then you have the ongoing research on medical and molecular studies, and MRD and things that we can do to assess who's at risk. But in terms of what patients can do, that's what I recommend.

Dr. Marisa Weiss: Right. Right. Thank you. Thank you. And Dr. Leon-Ferre, what do you tell your patients about when they ask those questions?

Dr. Roberto Leon-Ferre: Yeah, no, completely agree with Dr. Taiwo's recommendations. It's important to take charge of the things that you can control, and those are what Dr. Taiwo mentioned. Those are the things that you can directly influence to decrease your risk. I don't have much to add in terms of the lifestyle recommendations. I think Dr. Taiwo has outlined those very well. I would just add to that, that we definitely want to have people be motivated to think about clinical trials as well at that point when they're about to complete all their treatment, sometimes there's other preventive clinical studies. And I firmly believe that until we cure every woman with breast cancer, a clinical trial should be part of the conversation, because we cannot stop doing additional research until those cure rates approach 100%.

Dr. Marisa Weiss: Amen. Absolutely. Thank you. And we know you've told us that TNBC is not just one disease. There are a lot of different subtypes with unique characteristics. When someone's facing a diagnosis, are there other ways in which treatment can be more precisely tailored to each patient? So what should they do, ask their doctor about the specific subtype they may have and how that may affect treatment? Dr. Taiwo, you want to go first on that?

Dr. Evelyn Taiwo: Sure. In terms of triple-negative breast cancer, I think Dr. Leon-Ferre had mentioned there are things that you can do in the metastatic setting. It's imperative to check your PD-L1 status. We're not only just recommending chemotherapy blindly. There are patients, who if you're PD-L1-positive, adding immunotherapy to the chemotherapies, leading to improved outcomes and improved disease-free survival.

So, those are ways to personalize treatment, knowing what your germline mutation status is. We're using PARP inhibitors in the adjuvant setting. We're using it in metastatic settings. And then clinical trials. There are lots of trials looking at the combination of immunotherapy with this antibody drug conjugates. So they're a bit more personalized. It's not quite chemotherapy, but these are also targeting certain things in the tumor.

Traditionally, if you were HER2-negative, it just meant you were HER2-negative. Now we want to know, are you one plus? Are you two plus? Even though you're triple-negative, we now have a targeted agent for those patients that we didn't have up until recently. So, we're getting there in terms of personalizing. But those are the things I can think.

Dr. Marisa Weiss: Right. And just to clarify, and even people who may have been called HER2-negative zero, they may still have some activity. They might be ultra low. Right?

Dr. Evelyn Taiwo: Yes.

Dr. Marisa Weiss: So we're learning a lot more about that. And then when you said germline testing, you mean that testing for the genes you may have inherited that, like BRCA1, BRCA2, PALB2, things like that, where the PARP inhibitors may have a role now available for people with earlier stages depending on the situation, rather than just metastatic.

And so, it's an exciting time, and I'm so glad you brought up all those different situations. Dr. Leon-Ferre, what about side effects of treatment for people with TNBC, like from chemotherapy? What are doctors doing to manage those side... The more treatments you give, the more side effects there can be. How do you manage them so people can get through their treatment to get the benefit that they need?

Dr. Roberto Leon-Ferre: Right. Yes. No, I think side effects are something that needs to be taken very seriously, and it's a continuous dialogue between my patients and my team. We have to be always cognizant of what are the high priorities for the patient beyond cure. Of course, everybody wants to be cured, but there are unique situations where perhaps a particular side effect is it's something that is much more top of mind for a particular patient. I remember a few patients that I've had that are musicians or that are artists, and they worry tremendously about neuropathy, whereas other patients may say, "Well, I don't worry too much about that. I worry more about nausea."

So I think it needs to be a dialogue. And just like we personalize the targeted therapies based on mutations, we need to personalize also the drugs that we choose many times based on the priorities of our patients. So every time that we recommend a chemotherapy, we balance those risks. And thankfully, a lot of the progress that sometimes we don't speak enough about has been actually in those supportive care medications that we can now give along with chemotherapy to make it more manageable.

Dr. Marisa Weiss: Right. Right. And the same people who are more likely to get triple-negative breast cancer are more likely to get peripheral neuropathy, young women of color. And we're learning more about using the cold caps and the cold mitts and the cold socks to help reduce that risk. And then I actually did a clinical trial and looking at cannabis to help people manage CIP and chemotherapy-induced peripheral neuropathy if it should happen. because we want people to get through their treatment and get to the other side with a good quality of life. That's the whole point of treatment, is to give you back your life, and one that's got a high quality so you can keeping on. So to close, what's your greatest hope for improvements in diagnosing and treating TNBC? What makes you most hopeful? Dr. Taiwo, you want to go first?

Dr. Evelyn Taiwo: Sure. I think it's the fact that there's so many clinical trials, from TILs that Dr. Leon-Ferre mentioned. I think triple-negative breast cancer, we all know it's aggressive, it generally presents at a higher stage, it generally presents in younger women, but the responses that we're seeing in patients who are getting chemotherapy combined with immunotherapy, it's so exciting to see where we're going with this disease.

I think I'm excited about the fact that people are more aware about triple-negative breast cancer and just breast cancer in general. Patients are asking about getting screened earlier. We know if patients are screened, and triple-negative breast cancer is caught early, prognosis is better. Now that we're including MRIs in screening for women who are high risk, if we can catch triple-negative breast cancer early.

So for me, I think it's the fact that now we have more sensitive screening, we can catch this tumor early and we have more targeted drugs, and triple-negative is no longer doom and gloom. We're seeing pathologic complete response rates with chemotherapy and immunotherapy of 70%. That's unheard of and it's only going to get better.

Dr. Marisa Weiss: Yeah. Thank you so much. And Dr. Leon-Ferre, your last comment and what makes you most hopeful?

Dr. Roberto Leon-Ferre: Yeah. Like Dr. Taiwo, my biggest hope is that we can improve detection at an early stage and treatment of early stage disease to decrease the risk of metastatic disease. And I think that some of the advances that have been made and how we adjust treatment based on response to neoadjuvant therapy makes me hopeful that we'll see a day with much less metastatic disease.

And also, alluding to the fact that it's not just one disease. I think that in 5, 10 years, maybe we won't be talking about triple-negative breast cancer anymore, but we'll actually start classifying the disease by what are the factors that make cancer grow and treat it accordingly. Right?

Dr. Marisa Weiss: Yes.

Dr. Roberto Leon-Ferre: Because triple-negative is just a diagnosis of exclusion, if you will.

Dr. Marisa Weiss: Right. And medicine marches forward. So I'm hopeful, too, that we're going to get there, working together. So thank you so much for sharing your wisdom with creastcancer.org, our community, and for all you do every day to help people with breast cancer, especially this evening, we're so grateful to you. And for our last but certainly not least guest speaker today, we want to welcome the inspirational Kelly Thomas. Kelly, tell us about your story of being diagnosed with breast cancer.

Kelly Thomas: Well, thank you, Dr. Weiss, and thank you Breastcancer.org for having me. I was diagnosed at 33 years old when I was working in finance. No family history to breast cancer, no known genetic mutations. I was the type of person that listened to their doctors, and I was always told to check yourself monthly, and always checked myself and never felt anything. And then one day, I just sat on my couch and I folded my arms and I felt something. It felt like a golf ball, almost overnight. And I remember thinking, "How did this just pop up? How did I miss this?" And I just knew in my heart that it was breast cancer.

Dr. Marisa Weiss: And when you found out that it was triple-negative, what was your reaction like as that researcher person? You had to dig around to find out what it meant, but what was your reaction?

Kelly Thomas: Again, as someone that knew nothing about breast cancer, again, I had no one in my family to really talk to, and I kind of walked this by myself. I remember when I got the phone call after the biopsy that it came back positive. Actually, my gynecologist reached out to me and she was the one that gave me the phone call, because obviously, I went to her to get assessed on this, and thinking like, 'Oh, breast cancer is breast cancer. Right? People get breast cancer all the time."

And she was like, "You need a breast surgeon immediately." And I'm like, "Well, yeah." And, "You need a breast surgeon immediately." And I quickly learned that breast cancer, unless you've been diagnosed with it before, you know something about it, you learn that you're like, "Wow, there are multiple types of breast cancer." And then you go down the [inaudible 00:58:57] of Google and reading, triple-negative. And it was hard. I remember meeting with my first oncologist and I was already stage three. I'm like, "How?" It's just like-

Dr. Marisa Weiss: "How did this happen so fast?" Right.

Kelly Thomas: It was such a whirlwind because you're like, "I found this as soon as possible and I'm already at stage 3, stage 3C. and he sat down with me and he was like, "You need chemotherapy, you need surgery, and you need radiation off the bat," because it was already in my lymph nodes. And he looked at me and said, "I just want to let you know people die from what you have."

Dr. Marisa Weiss: Oh, that's nice of him to say.

Kelly Thomas: And I will never forget how that felt and just-

Dr. Marisa Weiss: The words. After my own diagnosis, I really appreciate greater the words that doctors use can make such a big difference. And by the way, she said, "Go to a breast surgeon immediately." The breast surgeon may be the one to sort of be the captain of the team initially, but as you know, as went through, for triple-negative breast cancer, often the upfront treatment is chemotherapy and maybe an immunotherapy first, before you ever have surgery. Now, your account on Instagram shares creative original videos and touching TNBC stories. Why did you want to carve out a space for TNBC content on social media?

Kelly Thomas: So, I was diagnosed in 2018, and I don't mean to date myself, but the breast cancer community today did not exist in 2018. It was very hard to find people. I remember going on there and trying to find breast cancer people, and even harder was finding triple-negatives. And you would have to search hashtags, and I would find people, but then they were no longer with us. And I'm like, you know that this is such an aggressive disease. And at the time, YouTube was really popular and there was people there, and then they were gone. And I was just like, "There is no way." My oncologist said, "People die from this." And I'm like, "No, there's got to be people living and thriving with it, too." And so I wanted to find these people, so I'm like, "Well, I might as well do the digging." And so, I created TNBC Thrivers in 2019, and I just wanted to showcase hopeful stories, because triple-negative is such a hard, daunting disease. There was no triple-negative community, and I decided to start the first one.

Dr. Marisa Weiss: Well, you're amazing. How do people get involved in TNBC Thrivers?

Kelly Thomas: So we have a website, tnbcthrivers.org. You can check out our Instagram page, @tnbcthrivers. We have virtual programming. Obviously, March is TNBC month, so we had this really exciting month. After this call, actually were doing breast cancer and skin care even, with Dr. Marisa Garshick. We're dermatologists, and so we're really excited for that. We have Thriver chats three times a month, and you could always send me a message @iamkellythomas at Instagram too, and I'm happy to share your story. I'm happy to have you meet the other Thrivers.

Dr. Marisa Weiss: Well, thank you so much, Kelly. It's great working with you. And I know at Breastcancer.org, we work very hard to reach out to all people with breast cancer, including those dealing with triple-negative breast cancer, but you really created a very hopeful, positive place for people to go.

Kelly Thomas: Well, I feel like this is full circle for me because I remember when I was diagnosed, when you search triple-negative breast cancer, you find Breastcancer.org. So I thank you so much, Dr. Weiss, for having me here. It really means a lot.

Dr. Marisa Weiss: It's kismet. We're all in the same universe. What you put out, you get back. And so thank you, thank you, thank you, thank you.

Kelly Thomas: Thank you so much.

Dr. Marisa Weiss: Before we go, I wanted to actually summarize some of the important information that was shared today. We'll also email you links to the articles and links to Maimah's and Kelly's organizations, because they could really be helpful to you. First, we talked about who gets diagnosed with triple-negative breast cancer. It can be anybody, but is that subset of breast cancer that's more common in people of color, Black women, Hispanic women, women younger than 40, and people with a BRCA1 inherited genetic mutation.

And while research is ongoing, I do want to share a study that found three risk factors linked to a higher risk of TNBC. If there's a family history of it, using birth control pills for long time, like more than 10 years, and having high breast density that's determined by mammography. We'll email a link to the article about the study so you can see more information there.

Eight facts to know about TNBC, where you learn about it and you want to explain it to others. Here are the eight things that are helpful. Again, breast cancer is defined by three markers. The estrogen receptor called ER, progesterone receptor PR, and the human epidermal growth factor receptor called HER2. And when these receptors are present, they're called positive, and when they're not present, they're called negative.

So if you've got triple-negative breast cancer, it means you don't have any of those three receptors. Although we found out today that there's more to dig in terms of the HER2 status, and maybe it's HER2 low, HER2 ultra low, whatever, where there may be more treatments against HER2 for those people. And about 10 to 15% of people with breast cancer have triple-negative breast cancer. It can be harder to treat and it can be more likely to come back, but we have new treatments today that are making that less of an issue.

TNBC tends to grow faster, and it can act more aggressive compared to breast cancers that have receptors for estrogen, progesterone and HER2. The symptoms for triple-negative breast cancer are kind of the same as with other types of invasive breast cancer. That's invasive, is when it starts in the milk pipe or the lobule in which it starts, and it breaks through that area.

Testing is required to diagnose TNBC, and your pathology report will include that as a part of the diagnosis. If you don't have very much in that pathology report, push the doctor and say, "Can we find out more about what they saw, because we know there are subtypes out there. Right?" And as we've talked, because TNBC doesn't have receptors for estrogen and progesterone, it's not a kind of cancer that responds well to hormonal therapies that do their work in those receptors.

And as a reminder, TNBC isn't one disease, but as we've talked about, it's a group of breast cancers with distinct characteristics or personality features. TNBC research is looking at better understanding what TNBC is, what turns it on, what turns it off, what are the best new treatments, and how to give treatments that work really well with fewer side effects. We need more research, so ask your doctor if there is a research study available to you.

TNBC treatments can include, when you're discussing your treatment plans with your doctor, talk about the possibility of the lineup of treatments, if it's chemo, surgery, radiation, or various orders, depending on your unique situation. Your doctor may also recommend immunotherapy. And if the cancer is HER2-low or HER2-ultralow, instead of assuming it's HER2 negative, you may also be a candidate for a targeted treatment called an antibody-drug conjugate, which we told you is sort of like hiring a spy with a backpack. You tell them where to go, where to drop the backpack of treatment, which it delivers the chemo in a more targeted way to the cancer cells, and that involves less in the way of side effects.

You also want to look into getting genetic testing. Beyond determining your risk of getting breast cancer, genetic testing helps us pick the best treatments for you and helps us figure out how best to follow you over time, especially if you have a BRCA, BRCA1, 2 or PALB2 mutation. And we'll send you more links with information about these treatments. At Breastcancer.org, we've published an in-depth podcast interview with TNBC expert, Dr. Lisa Carey, who's on the front lines of research and treatment. It is a must listen, and we'll send you links to all these important podcast episodes.

And just to know, that we have an upcoming webinar on May 20th, focusing on mental health after a diagnosis, and the fear of recurrence can really get in the way of your mental health. How do you manage that? We'll be addressing that. It's such a critical issue. We want to make sure everyone feels seen, heard, understood, and help you find the help that you need.

And finally, this Friday at 4:00 PM, we're hosting a special support group just for people with TNBC who are in treatment at Breastcancer.org. And if you haven't been to Breastcancer.org support group yet, trust me, you'll want to see why our community members call it a lifeline. It's run by a professional facilitator. You'll bond with others who know what you're going through, and receive useful information to help advocate for yourself. We'll email you a link to that one also.

And we want to thank each and every one of you for joining us today, being part of our Breastcancer.org community. We want to thank our fabulous speakers today. You've given your time so generously, and you've been so committed to advancing our knowledge through research and through sharing, creating a community of your own, being that person out there, that group out there, the community out there that is giving hope to more people. So, thank you all, and take care to everyone who's joined us today.

Q: Any updates on the Trodelvy trial for early-stage breast cancer?

A from Dr. Roberto Leon-Ferre: One of the largest studies evaluating Trodelvy (sacituzumab govitecan) + immunotherapy in patients with early-stage TNBC is still ongoing and recruiting participants.

Q: My 30-year-old daughter recently found out she is BRCA1 positive. What recommendations do you have for her — especially in regards to an increased risk of TNBC?  

A from Jamie DePolo: Breastcancer.org has info on BRCA1 mutations, including on how the mutation affects breast cancer risk.

Q: Survival rates? 

A from Jamie DePolo: The American Cancer Society has info on survival rates from the SEER database.

Q: Is there an increased risk of recurrence if you opt to have a lumpectomy versus a mastectomy? 

A from Dr. Roberto Leon-Ferre: The risk of recurrence is not necessarily higher with lumpectomy or mastectomy, as long as in addition to lumpectomy radiotherapy is given as needed as well.

Q: What are some long term effects of chemo, specifically Keytruda [Editor's note: Keytruda is an immunotherapy medicine]? I am experiencing hair loss even though I am three years out of treatment and I feel my depression has gotten a lot worse since I had treatments. I am managing with medication.

A from Jamie DePolo: Our page on Keytruda has info on side effects. But Keytruda is often given with chemo meds, so it can be hard to parse out which medicine is causing which symptoms.

Q: Can you provide any information on microbiome research related to triple-negative and/or immunotherapy?  I recently learned about fecal transplant for those who can't take immunotherapy. 

A from Dr. Roberto Leon-Ferre: There is still a lot of research being conducted on the impact of the microbiome on responses to immunotherapy — but this is still not completely understood. We are not recommending fecal transplants for this purpose as more research is still needed.

Q: What is the percentage that breast cancer changes from ER/PR positive originally to now triple-negative metastatic disease? 

A from Jamie DePolo: There are a couple studies that may help, I suggest looking at this one and this one.

Q: What are your thoughts regarding the Signatera test in regards to finding TNBC a second time? 

A from Dr. Evelyn Taiwo: The research on the utility of tests like Signatera is ongoing. The results of these research studies will guide how best to use the tests for follow-up. It’s too soon to formulate an accurate response but I suspect we will be using these tests routinely in the near future.

Q: Your opinion on circulating tumor DNA testing for recurrence screening? 

A from Dr. Evelyn Taiwo: Circulating tumor DNA (ctDNA) is likely going to change how we screen for recurrence in the near future. It is not standard of care at this time.

Q: Is routine screening with CtDNA testing advisable for several years after treatment? 

A from Dr. Evelyn Taiwo: It is not standard of care at this time. I reckon we will have more guidance based on research studies soon.

Q: How can I explain this to my family and friends in simple terms? 

A from Jamie DePolo: This page on TNBC may help you.

Q: Hi All, please may I know standard treatments for stage I, grade 2 TNBC? 

A from Jamie DePolo: In general, these are the treatments. But it depends on your unique situation and any other health conditions you have.

Q:  I read that dexamethasone given while on chemo treatment would reduce the efficiency of immunotherapy, at least when brainstorming cancer. Could it be the case for breast cancer that dexamethasone should not be taken while on treatment with immunotherapy? 

A from Dr. Roberto Leon-Ferre: This was a concern early on when immunotherapy was being developed. However, most studies of immunotherapy in combination with chemotherapy in breast cancer have shown it to be effective regardless of whether dexamethasone or other steroids are given. Dexamethasone can be incredibly helpful in decreasing the risk for allergic reactions to chemotherapy and can also help with nausea. I would have no concerns about taking it with chemotherapy and immunotherapy as recommended.

Q: Is it ok to eat eggs and dairy with TNBC? 

A from Dr. Roberto Leon-Ferre: Yes, no concerns specific to TNBC.

Q: What can you tell us about triple-negative breast cancer and hormone-positive in one tumor? Basically a heterogeneous tumor. 

A from Dr. Evelyn Taiwo: This is likely due to tumor heterogeneity. It means the tumor has different clones and is being driven by different receptors.

Q: Is it normal that I didn’t get any treatment after mastectomy and chemotherapy? TNBC, stage I. 

A from Dr. Roberto Leon-Ferre: Depends on many factors, but yes, there are some stage I TNBC patients who may not receive chemotherapy for various reasons (tumors that are very small, or certain histology subtypes).

Q: If you have had triple-negative, do you have to stop hormone therapy because you have had a total hysterectomy? 

A from Jamie DePolo: That's a question to discuss with your oncologist and general practitioner.

Q: Are you able to diagnose TNBC from an axillary lymph node biopsy?

A from: Dr. Roberto Leon-Ferre yes, it is possible to diagnose TNBC from axillary lymph nodes. However, if there is also a breast tumor, we usually also recommend a biopsy of the breast tumor.

Q: Do you know any timeline?  I realize you won't know the specifics. I am a recent survivor of TNBC but was unable to finish immunotherapy. I'm wondering if microbiome research may help those of us unable to take immunotherapy in the future. 

A from Dr. Roberto Leon-Ferre: Based on what we know so far, it is unlikely for microbiome research to replace immunotherapy. Most of its potential is to try to help identify how to possibly improve the efficacy of immunotherapy.

Q: Is immunotherapy only given for stage 2 and above? I am stage 1 and it wasn’t given as an option. 

A from Jamie DePolo: Keytruda is indicated for early-stage TNBC with a high risk of recurrence. It's a good idea to ask your oncologist about your risk of recurrence.

Q: I thought all TNBC are grade 3? Is this incorrect? 

A from Jamie DePolo: No. Inflammatory breast cancer is always stage III or higher. TNBC can be stage I through stage IV.

Q: Standard of care post-treatment for low-risk 1b stage TNBC is mammography. What if mammography did not detect the cancer originally? 

A from Jamie DePolo: Definitely talk to your oncologist about which tests you should have. In some cases, it's recommended that people have a mammogram and breast MRI each year, six months apart.

Q: What treatments are in the pipeline for triple-negative breast cancers, including metastatic disease? Are there options beyond immunotherapy? I can't have Keytruda.  

A from Jamie DePolo:: This podcast with Lisa Carey discusses several treatments being studied. If you scroll down to the "about the guest" section, you can read the transcript.

Q: What does TNBC idc with some micropapillary features mean? 

A from Jamie DePolo: It means triple-negative breast cancer, invasive ductal carcinoma. Micropapillary features means that there are spaces around the cancer cells.

Q: Do we know what caused TNBC? 

A from Jamie DePolo: Unfortunately, no.

Q: If we have TNBC, does it mean we won’t be cured? Is it more like a chronic disease? 

A from Jamie DePolo: Maimah is a wonderful example of someone who was diagnosed with TNBC who is thriving and living her life.

Q: Is there a way to identify dormant cancer cells after remission? 

A from Jamie DePolo: Not yet, but researchers are studying how to do this. See this podcast. 

Q: T-DXd (Enhertu) has been shown in trials to increase lifespan of TNBC. Research is showing it’s effective if HER2 is ultralow. Could it be used if you’re not metastatic and your HER2 is negative 1+?  Thank you. 

A from Jamie DePolo: I believe studies are looking at Enhertu for early-stage breast cancer, but right now it's only approved for advanced-stage/metastatic disease.

Q: Would you recommend Dato-DXd + Durvalumab rather than Keytrudra in combination with chemotherapy for early-stage TBNC patients? 

A from Jamie DePolo: Durvalumab is being studied for TNBC, but it's not approved for that use yet. This podcast may be helpful.

Q: How can more women of color get involved and participate in clinical trials and studies? 

A from: Lisa Kline, Breastcancer.org There’s information available on the Tigerlily Foundation website and this special report on our website.

Q: What are standards for follow-up/screening once active treatment is over, to monitor for recurrence? 

A from Jamie DePolo: That depends on the type of surgery and other treatments you've had. It's best to discuss this with your doctor.

Q: Is it standard practice to offer clinical trials when diagnosed? I was never offered anything, but gladly would have participated had I known of any at the time. 

A from Jamie DePolo: It depends on where you're being treated. Many large teaching hospitals will discuss clinical trials with people. In smaller clinics in more remote areas, there may not be the same access.

Q: I have just finished neoadjuvant chemotherapy and immunotherapy. The next step is surgery. How many radiotherapy sessions are usually recommended?   

A from Dr. Evelyn Taiwo: Thank you for your questions. The amount of radiation depends on the disease stage, the lymph node findings, and the type of surgery. Your radiation oncologist will be more specific about the number and duration of sessions tailored to your disease stage.

Q: What does it mean for treatment when you say that TNBC is not a single disease? 

A from Jamie DePolo: Unfortunately, TNBC is categorized by what it's not. Scientists are working to tease out the different biological features of TNBC in hopes of finding proteins or other things that can be targeted with drugs.

Q: Does having an autoimmune disorder (specifically MS) take immunotherapy off the table? 

A from Jamie DePolo: This study offers some insights. But it's best to talk to your doctor.

Q: Do you have any cases of serous retinal detachment caused by pembrolizumab? 

A from Jamie DePolo: It has happened, here’s an article to read. 

Q: I'm receiving chemo (12 paclitaxel/carboplatin and 4 AC) + Keytruda every 3 weeks for early-stage TNBC (34 y.o). I finished 2 applications. Will side effects get worse after the 3rd application? For now, I just have strong nausea the 3rd/4th day after application, but no other side effects. Blood counts are also good, for now. 

A from Dr. Evelyn Taiwo: I suggest you discuss with your oncologist about escalating the anti-nausea medications.

Q: Is stage II just a question of the size of the tumor? Or does stage necessarily involve the lymph nodes ? 

A from Jamie DePolo: It does involve size, whether cancer is in the lymph nodes, as well as hormone receptor status. See this page for more detailed info. 

Q: I have TNBC and have been given Keytruda for a year. I was recently diagnosed with Type 1 diabetes and I was told by my oncologist that it was the Keytruda that caused this. Have you heard anything about this? 

A from Jamie DePolo: Because it's an immunotherapy, Keytruda can affect the glands in your body that make hormones.

Q: Hi, I am an African American female, age 48, and was diagnosed in January. I have lymph node involvement by my armpit, and was given information for a clinical research study. But the PET scan showed additional lymph node involvement behind my breast bone and they said that since that discovery I am now stage 3 and not eligible for the study. My current status is T2N3bM0. How do I go about looking for another legitimate study, or is it only through my oncologist? 

A from Jamie DePolo: You can search on the ClinicalTrials.gov site. You also can ask someone in your doctor's office where you can go for clinical trials near you.

Q: If you were diagnosed with TNBC but no lymph nodes were involved, is this a good prognosis? 

A from Jamie DePolo: It also depends on the size of the cancer. It's best to ask your doctor about your individual prognosis.

Q: Is PLD1 a blood test or a tumor biopsy? 

A from Jamie DePolo: It's an immunohistochemical test that is done on a sample of the cancer. 

Q: I am 5 years out of TNBC stage 3. I have a BARD gene mutation. Does that play a part in me getting this? I had chemo, targeted immunotherapy in a clinical trial, surgery, and radiation. 

A from Jamie DePolo: A mutation in the BARD1 gene seems to increase the risk of breast cancer.

 Q: What can I do to prevent a recurrence of the cancer?  

A from Jamie DePolo: Most doctors recommend daily exercise, avoiding alcohol, and eating a diet full of vegetables, lean protein, fruit, and unprocessed foods.

Q: How is treatment different if you do or do not have a genetic mutation? 

A from Jamie DePolo: If you have a genetic mutation, you may be a candidate for a PARP inhibitor.

Q: How long does it generally take for genetic testing to be returned? 

A from Jamie DePolo: It can take between one to two weeks. The results usually go to your genetic counselor or doctor first, who then discusses them with you. 

Q: If a person has genetic testing with their first diagnosis of TNBC and is cured and then six years later gets a second diagnosis of TNBC, do they need genetic testing again? 

A from Jamie DePolo: You probably don't need genetic testing again, but the cancer tumor should be tested for various proteins and mutations.

Q: Are anxiety meds okay to take during treatment? Specifically benzos. 

A from Jamie DePolo: Definitely talk to your doctor about this.

Q: If I have TNBC now, and it comes back after time/years, will I always have this type of breast cancer or it could be different? 

A from Jamie DePolo: Breast cancer can recur with a different hormone receptor status and HER2 status.

Q: I am triple-negative and wanted a double mastectomy. After testing positive for BRCA2, I was allowed to have a double mastectomy. It is important if you are positive with BRCA2 or 1, to let your family know and get tested also. One of my children also tested positive for BRCA2 and is being seen on a regular basis. 

A from Jamie DePolo: Our pages on genetic testing offer info about this. 

Q: I am in a TNBC STEMVAC Phase 2 clinical trial at the University of Washington in Seattle (in coordination with the University of Wisconsin and Johns Hopkins University). Are researchers seeing effects on trial funding with the recent U.S. administration and NIH  budget cuts? 

A from Jamie DePolo: Yes, they are. I did this podcast with a researcher who talked about how  research is being affected.

Q: How do I understand Ki67? I have >80 and from what I read — it is really high/aggressive. Does that change recurrence rates? 

A from Jamie DePolo: Ki-67 is a way to measure the rate of cancer cell growth. Cancers that are growing faster are usually considered more aggressive.

Q: I am HER2-negative. What does the score 0 mean? 

A from Jamie DePolo: See this page on our site. 

Q: Is it safe for any breast cancer patient to try cold cap/cold mittens during chemo time? My oncologist said no. 

A from Jamie DePolo: My understanding is that scalp cooling is safe. It may not be available everywhere, though.

A from Jen Uscher, Breastcancer.org: You might also want to read our article about using cold gloves and socks during chemo.

Q: My TNBC diagnosis was delayed due to the COVID pandemic impacts on our regional hospitals. Is there any data emerging about TNBC diagnosis rates spiking after the pandemic subsided (and hospital schedules normalized)? 

A from Jamie DePolo: I haven't seen studies on only TNBC, but research shows that breast cancer screening went down during COVID and scientists expect diagnosis rates to go up.

Q: Is there a benefit to getting updated genetic testing if you were diagnosed as [positive for] BRCA1 20 years ago? 

A from Jamie DePolo: Yes, tests have changed dramatically over the last 20 years. Talk to your doctor about it.