Dr. McCaskill‑Stevens, welcome to Washington Post Live.
DR. McCASKILL‑STEVENS: Good afternoon. I am delighted to be here.
MS. WINFIELD CUNNINGHAM: And remember we always want to hear from you, our audience. You can share your thoughts and questions on Washington Post Live by tweeting @PostLive, and we’ll try to fold those into our conversation.
Dr. McCaskill‑Stevens, your title is a bit of a mouthful. Can you tell us a little bit about what you do at NCI?
DR. McCASKILL‑STEVENS: Thank you very much. Well, the Community Oncology research program is the community‑based clinical trials network. I am a medical oncologist by training and focused my initial interest on breast cancer.
Now I’m leading in the community‑based clinical trials network, which was designed to really make sure that the clinical trials are accessible in the communities where individuals live. So, in our program, we have a broad research portfolio that includes treatment but was originally designed to bring the treatment oncologists into the prevention arena. We now do screening, but we, importantly, also do symptom management. So we look at the adverse effects of chemotherapy. There is other treatments as well as symptoms of the cancer itself.
So, in a nutshell, that’s what we do. We have a huge reach throughout the country. We have over a thousand sites and over 4,000 physicians, and if you include the expanded network of nurses and all the advanced practitioners, we have 9,000 individuals who help to make access to individuals in their own communities for cancer research.
MS. WINFIELD CUNNINGHAM: We know clinical trials are so crucial to advancing cancer care and yet so many challenges with trials, and I’d love for you to spell out what you see as some of the biggest challenges in terms of recruiting and conducting these trials.
I was reading a little bit before this interview, and I was reading that there are sort of this problem of repeat patients who will enroll sort of consecutively in trials and actually was reminded of someone I knew in college who did this very thing. Can you talk a little bit about that challenge and other challenges?
DR. McCASKILL‑STEVENS: Well, I think that the challenge and I think those whose clinical trial it is, our goal is to make sure that the patient has access, that the patient has been given enough information to make a choice. I think that’s the best that we can do.
I think, importantly, it’s making sure that it’s in an environment in which the patient doesn’t have to worry about transportation to traveling too far and most importantly that there’s trust. So we select institutions that tell us what their catchment area is. We ask many questions of them. Who do you treat? What connections do you have in the community?
And, as I said in the introduction, the oncology team is rapidly expanding. It takes the team to do this, not just the health care team that are oncologists by training, but also the relationship with the primary care physicians. Particularly, patients who are not that knowledgeable about cancer treatment, they will go to their primary care physicians and ask, “Well, Dr. McCaskill‑Stevens has asked me to participate in a clinical trial. What do you think about that?” So it’s very important that we engage the important stakeholders.
Trials are becoming increasingly complex. We are diving into precision medicine to make our treatment more tailored to the individual, to the individual’s cancer. So the nature of clinical trials that we had three decades ago is really changing. We’re asking more specimens so that we can do all the‑‑to employ all the advanced technologies that we have, the molecular characterizers that are so individual.
So I think one of the challenges is making sure that that information is out there, but most importantly that the information is given, that the environments are culturally sensitive and welcoming to the individuals who are being asked to participate in clinical trials.
We know that there have been barriers in terms of trust, and I like to think of them as the historical trust issues, but some of the more current ones that I think lingered from the past‑‑but I think we have‑‑because we have such a diverse community in the U.S. now, I think there’s sort of a new wave of trust.
And let me be specific about that. You know, we’ve talked about Tuskegee, and there are many other events locally throughout the country that led to mistrust. But I think also we need to keep in mind that with new populations coming in, individuals who live in countries where there was no screening, no cancer registries, or not even the training disciplines to treat cancer, that that’s a different level. So we have to speak to them on the level from which they’re coming and make sure that throughout what we do for screening, for treatment, for survivorship, that it’s tailored to these individuals and what they’re accustomed to and how we can work to make their outcomes better as well.
MS. WINFIELD CUNNINGHAM: Well, all this sounds good and reasonable, but, you know, how big of a problem is it in terms of not being able to recruit enough people for clinical trials? I was reading that a large number of clinical trials seem to be delayed or never get off the ground because it’s just hard to find the right sorts of people to enroll and then persuade them to enroll.
DR. McCASKILL‑STEVENS: Well, I think that the NCI’s effort to get patients in clinical trials and putting them in the communities where accessible actually have been quite successful.
We have‑‑in 2013, 2014, there were lots of discussions and modifications and revamping to make sure the trials are conducted more quickly, that they end successfully, and over the last couple decades, both in the treatment arena as well as in the Division of Cancer Prevention, for prevention and other types of trials, I think some of those barriers have been broken down.
The funding, the regulatory issues that one has to go through to ensure that the patients were safe‑‑one of the things, I think, that has helped us is having a central IRB for review of the trials, that when you had every institution having to do its own approval, that was really a burden. And that’s one of the examples that has helped us to expedite that.
I think also that the discussions about cancer are more prevalent in the media, and I think that we have tools now, translation tools, for example, that we’re doing so that local sites as well as the CRP can help, the central review panel can help us in making sure that the languages are appropriate and also, importantly, that the trial’s problems come from the communities. That’s one of the things that we ask. We are delighted when an institution can bring to the table something that is from a specific population that’s a research gap, and we can bring in all the expertise that we have to design those trials to be more user friendly and feasible and wanted in those populations.
MS. WINFIELD CUNNINGHAM: I know another challenge, of course, is the failure rate of clinical trials. I read somewhere that it’s about 80 to 90 percent failure rate, and I’m wondering, is that sort of an unavoidable part of research? Is there a way to improve the success rate?
DR. McCASKILL‑STEVENS: Well, remember you do the trial to answer a research question. Not all the trials are going to be positive. I’d also add that sometimes when the trial doesn’t have a positive or what we call a “negative trial” that we learn from them. We always say that, you know, you learn‑‑more questions should emanate from a trial than necessarily that you’re answering.
But I do think that with the advanced technology, we’re able to dig a lot deeper in terms of answering the questions and, more importantly, identifying the next step that’s going to take us there.
MS. WINFIELD CUNNINGHAM: There’s a lot of talk these days about the need for diverse representation in clinical trials, and, you know, it’s sort of obvious why you would want equal representation between males and females because of the obvious biological differences.
But it seems less clear why, say, the color of someone’s skin would affect the outcome in a trial. Can you talk to us about how you look at that and why you see that as important?
DR. McCASKILL‑STEVENS: Well, I think that the first step is to think about the fact that everyone should have access to good care, and the driver for what’s done in practice in the real world outside of‑‑you know, just across the country has really brought‑‑has been‑‑emerges from the information from clinical trials.
But we know that there are different rates and incidence rates among populations, and even when the incidence rates are more equal in terms of incidence, there are differences in mortality. So it’s really critical to have participation, representation from those individuals who are dying and have a higher risk of mortality in our cancers, and we know that among racial and ethnic population, this is, in fact, the case. They have a much higher burden of cancers in their outcomes in terms of mortality. We also know that there are barriers and that there are the social factors, the lower incomes, the discrimination, the racism that they function‑‑that they function under.
And it’s also important to know that we know that in the past, we’ve had many institutions that have served racial and ethnic populations within their communities. Many of them‑‑many of them were known as the safety net hospitals where they could come in, regardless of their income or their insurance status, and many of those hospitals are no longer functioning. So it’s really critical that we get them in.
I mean, we want our outcomes to be generalizable to racial and ethnic populations, regardless of whether you’re rural or you’re in an urban area or ages. You know, we know that there’s age discrimination or age‑‑lower representation at clinical trials.
And we learn so much over time. You know, we’ve learned that the adolescents and young adults, 15 to 39‑‑you know, we’ve learned so much in the pediatric population, but many of our trials have been very successful, and they’ve had great outcomes. But there are disparities.
For example, in Hispanic children, they’re 20 percent more likely to develop leukemia than in non‑Hispanic Whites. So there are many questions that emerge, and so having the diversity of race, ethnicity, geographic representation is critical to make sure that their quality outcomes in cancer are obtained.
MS. WINFIELD CUNNINGHAM: Those are all helpful points. Just to press into that topic a little bit deeper, you mentioned precision medicine and the targeting of cancers looking at, you know, very‑‑at someone’s genetic makeup, and I guess I’m wondering sort of in light of that, how helpful are these broad racial categories? Because there’s great‑‑there’s large genetic diversity even among these broad racial categories. So I’m just wondering how useful those categories are sort of when you’re talking about this need to fold in more diversity in clinical trials.
MS. WINFIELD CUNNINGHAM: Yes. Thank you. That’s an excellent question.
As you know, we now use the Office of Business Management‑‑OMB criteria, and they are what we have now. They are restrictive, but we are working very hard to disaggregate them.
And you’re absolutely correct. If you look at the Hispanic population, it’s going to be important to know whether this is a population of South America, whether this is Puerto Rico, whether these are immigrants who have come in, you know, decades ago or they’re newly ones.
And, similarly, within the African American population, where we have‑‑by this category, if you’re from South Africa, it’s African American or Black, but if you just put Black, we don’t know whether you immigrated from the Caribbean area or you’re from South Africa or any of the other African countries that will allow you to categorize yourself. It’s self‑reported.
So our method of addressing that is coming up with tools that have expanded the opportunity for individuals to self‑report, to learn about their country of origin, to learn where they were born, and what their languages are that were spoken or whether they are first‑generation populations.
MS. WINFIELD CUNNINGHAM: I want to ask you about recent comments by President Biden who was talking about his Cancer Moonshot earlier this month and talking about his goal of cutting cancer deaths in half in the next 25 years. Do you see this as an attainable goal given what you know about the development in cancer treatments and the rate of that?
DR. McCASKILL‑STEVENS: I hope this is an obtainable goal. I think there is a lot of evidence, as you know, in the past years, some prompted by covid and a greater awareness of some of the things that have happened throughout the country and lives lost. I think there’s a greater tension on disparities. I think a combination of advanced technology, open‑‑more open discussions about it, I think that it’s something we can work toward. I’m hoping that we get to 25 percent. It’s going to take a big team and not just oncologists but, of course, policy, industry, the FDA, all of the agencies that have to work together to make this possible.
MS. WINFIELD CUNNINGHAM: I know a lot of your professional focus has been on breast cancer, including as director of STAR, which is short for the study of tamoxifen and some other drug that I’m having trouble pronouncing.
DR. McCASKILL‑STEVENS: Raloxifene.
MS. WINFIELD CUNNINGHAM: Can you tell us about that study and what its findings were?
DR. McCASKILL‑STEVENS: Well, this is a very large study that built upon a study before it, which looked at tamoxifen versus placebo in women who were at high risk of developing cancer. So then there was another drug that showed promise in this area. So we compared those two drugs, and now both of those drugs are FDA‑approved for reducing the incidence of breast cancer. So that’s very important.
You know, we had some challenges. We worked very hard to provide to minority women information that was applicable to them. For example, one of the things that was a driver into these trials was a reduction in the contralateral breast cancer. So we know that if you have breast cancer in one breast, you are at risk of developing it in the other breast, and so the drug tamoxifen had demonstrated that ability.
So, when I would go to talk to diverse communities or specific African American communities, I presented data that we analyzed to show that they got the same benefit. We were clear about the adverse events and making sure that they understood that, you know, many populations with growing incidence rates of obesity and more chronic diseases and we know that there are extra burdens of those disease in racial and ethnic populations, but thinking about the risk and benefit, you know, if you’re going to reduce a risk of breast cancer with an agent that had some side effects that may impact your chronic disease, we were very clear about that. But I think the outcomes and the availability of reducing risk for women was a significant finding in that study.
MS. WINFIELD CUNNINGHAM: There’s always this debate over the origin of cancer, right, the generic side of it and then the behavioral side of it, and I just wanted to dive into that briefly in the time we have left.
I know, of course, as you know, that there are genetic markers for some of the most common types of breast cancer, but are there prevention efforts that women can take to try to reduce their risk as well?
DR. McCASKILL‑STEVENS: Absolutely. And I’ll speak specifically about breast cancer. We know that there are some associations with obesity. As a matter of fact, if you look across the board, we know that 40 percent of the cancers that do exist are probably modifiable by changing of lifestyle and other issues, of course, inactivity, your family history, of course, which you can’t change. But what you can do is be knowledgeable about it. And I encourage families to talk about their family histories and research it.
We now know that breast cancer is not just one disease. So there are subtypes, and there are different risk factors for them. But, certainly, things reducing, you know, weight loss, increasing activity, and also advocates for making sure that the facilities in which one can do these types of things are available in the specific communities, that’s really important.
MS. WINFIELD CUNNINGHAM: Well, we’re going to continue following this vitally important topic. Dr. Worta McCaskill‑Stevens, thank you so much for joining us here at Washington Post Live.
DR. McCASKILL‑STEVENS: Thank you.
MS. WINFIELD CUNNINGHAM: And thanks to all of you for joining us here today. Please stay with us for the next segment of this conversation where we’ll be speaking with best‑selling author and motivational speaker, Joan Lunden.
MS. ORZECHOWSKI: Greetings to our online audience. My name is Martha Orzechowski, and I’m a part of the AstraZeneca US team.
I’m thrilled to be here today as part of our YOUR Cancer program, which celebrates and supports individuals working to redefine cancer care. As we’ve just heard, patient navigation and resources beyond the medicine are important tools for advancing health equity in the cancer space.
Today we’re going to explore this topic further with Dr. Linda Burhansstipanov, a public health researcher, educator, and president of the Native American Cancer Initiative. In addition to her current role, Linda is also a member of the leadership at the Academy of Oncology Nurse and Patient Navigators, and Linda has served on multiple federal advisory boards.
Dr. Burhansstipanov, thank you so much for being here, and welcome.
DR. BURHANSSTIPANOV: Thank you very much for including our community in your efforts.
MS. ORZECHOWSKI: Of course.
Linda, we know that patient navigation can be a key to patients reporting better outcomes and improved quality of life. So can you tell me a little bit more about the role of the patient navigator and how they interact with a patient’s larger health care team?
DR. BURHANSSTIPANOV: Yeah. Patient navigators really need to be part of the entire oncology team. They really understand how to talk with the community. Navigators typically come from the community, same community as the patients, and so they’re familiar with how complex issues are phrased. They make things easier to understand so that people can make informed choices about what’s happening to them and their health and moving forward in a good way.
They definitely are invaluable for overcoming barriers to care. They find effective strategies for getting people into care in a more timely manner.
MS. ORZECHOWSKI: Thank you. That’s very helpful.
We know that recent advances in precision medicine are helping transform patient outcomes all across the cancer community, but unfortunately, disparities still remain. Can you help us understand how patient navigation can help close some of those gaps, especially for people of color and other marginalized communities?
DR. BURHANSSTIPANOV: Yeah. The navigators can make certain that the Western medical concepts are understandable to the patients, and they can ask better questions and have more control over what is happening to them during their entire experience. And this is very, very difficult because so many clinical trials are using new types of precision medicine and new types of treatments that are proving so effective, but if we don’t understand what they are, we’re not going to say we want to take part.
And the navigator provides that liaison in a culturally respectful manner so that people can make an informed choice about what they can do for their treatments.
MS. ORZECHOWSKI: Thank you for bringing that to light. I think that’s incredibly helpful.
A second part to that question is we know how important in the precision medicine landscape genetic testing can be. So tell me a little bit more about how your patient navigators are supporting patients’ understanding of genetic testing.
DR. BURHANSSTIPANOV: Yeah. We’ve been running a program called Genetic Education for Native Americans, or GENA, since 1996, and it provides genetic information in culturally respectful manners as well as a lot of hands‑on activities that are fun and silly but help people understand, for example, pharmacogenetics and understand what tailored medicines or targeted therapies actually refer to.
Our community has actually been very positive. They want to take part, but if they take part, they want to make certain they can afford the treatments or the medications when they are available to the public.
We are from‑‑we get most of our health care from Indian Health Service, and it is the most underfunded federal program anywhere. And so we need to make certain that we can get access to the same quality medicines, as do all other people.
MS. ORZECHOWSKI: Thank you. Thank you so much, and I know we’re almost at time, and there’s still so much work left to do and so much to talk about. Any closing thoughts you’d like to leave us with today, Dr. Burhansstipanov?
DR. BURHANSSTIPANOV: Basically, that what we found through our research is that Native patient navigators‑‑we refer to them as Native sisters and Native brothers‑‑have really been essential in improving access to high‑quality care and resulting in higher quality of life for the Indigenous patient as well as higher quantity in years of life. They really are important.
MS. ORZECHOWSKI: Well, I couldn’t agree more. Thank you so much for sharing your insights and your experiences today.
If you’d like to learn more about AstraZeneca’s commitment in this space, please visit YOURCancer.org.
A big thank‑you to The Washington Post for hosting this timely forum, and thank you again to you, Dr. Burhansstipanov, for your time and the incredible work and commitment of you and your organizations for your patients.
And now I’ll turn it back over to The Washington Post.
DR. BURHANSSTIPANOV: Thank you, Martha.
MS. WINFIELD CUNNINGHAM: Welcome back to Washington Post Live. For those of you just joining us, I’m Paige Winfield Cunningham, an editor here at The Post, and I’m now joined by journalists, best‑selling author, and motivational speaker Joan Lunden.
MS. WINFIELD CUNNINGHAM: For our viewers, please tweet us @PostLive your questions, and we’ll try to get those asked.
Joan, you were‑‑as was mentioned already, you were diagnosed with stage 2 triple‑negative breast cancer eight years ago, and you wrote a book about your experience entitled “Had I Known.” What is that in reference to? What do you wish you had known?
MS. LUNDEN: You know, I didn’t know of any family history. We never lived close to any of my relatives on my mom’s or my dad’s side. So, you know, you don’t overhear that conversation between two aunts like‑‑because those are back in the days where they wouldn’t even tell the family, let alone friends or the public, that they had breast cancer. You know, the big C, I was kind of whispered about, you know, back in the day, and a lot of people just don’t know that they actually have a family history. And it’s really important that everyone asks the questions and finds that out.
But I don’t really think I had any family history, but had I known that less than 15 percent of women diagnosed with breast cancer ever had a family history, I wouldn’t have been walking around feeling, you know, like, you know, “I know the statistics. One in eight women will be diagnosed with breast cancer at sometime during their life.” I just didn’t think I’d be the one in eight because I didn’t have it in my family. Boy, was I wrong.
And I hear from women all the time on my social media: “I don’t have it in my family. I eat healthy. I’m a runner. I take good care of myself. I can’t believe I was diagnosed with breast cancer.” So I thought it was important to get that out there.
Had I known anything about dense breast tissue, which I knew nothing about, I wouldn’t have known that I was also‑‑that I also had that and I was also at risk because of it.
So, on June 5th, 2014, that was the day that I was to go for my annual mammogram, but about a year and a half before that, I had‑‑I had been sent by a health program I was working on to interview Dr. Susan Love, and she’s like, you know, one of the leading experts in breast cancer. She wrote the book, “The Breast Book,” and the interview was about mammograms. So, at some point in the interview, Dr. Love, who is a very‑‑she’s a force to be contended with. She looked at me and said, “You do get your annual mammograms, right, Joan?” and I said, “Yeah, but, you know, I’m one of those women who they always call back in for more pictures,” and you always‑‑you freak out, and you say, “Oh, my God, did you see something bad?” But they always say the same thing, “No, no, no. It’s just hard to see anything because your breasts are so dense.”
Well, with that, Dr. Love said, “Wait a minute. If you have really dense breasts, then you need more than a mammogram. You need an ultrasound. Nobody has told you that?” “Nope. No one has ever told me that.” I didn’t know it was a thing to ask about.
So that day, because I went on that interview‑‑I could have walked out that day. I took the 3D mammogram, you know, the best of the best, and it was clean. I could have just walked out of that radiology lab thinking that I was good to go another year, another clean mammo. Thank goodness, I walked across the hall, and I had that ancillary test, the ultrasound, in which they found a tumor, one‑‑a little bit larger one and another small one nearby.
And after the biopsy, I met with my breast cancer surgeon, who‑‑I’m going to admit something‑‑who said‑‑she looked‑‑she was looking at the biopsy report that got handed to her, as I was sitting across from her, and I could tell by her face like this isn’t going to be good news. And she said, you know, “Unfortunately, you have triple negative.” I knew so little about breast cancer at the time. I thought, “Ah, well, at least I’m negative to three things,” and she then proceeded to tell me, “No, no, no. You don’t have the receptors for estrogen positive or down the list, the three major breast cancers, for which we have targeted treatment. So you’re going to have to undergo months and months and months of chemotherapy in addition to radiation and surgery.”
At that moment, I, all of a sudden, realized that it was going to be a much tougher road, and admittedly, the first question was “Are you telling me I’m going to lose my hair?” And she said, “Yes,” and up to that minute, I thought, “Oh, you know, I’ll put a baseball cap on and some sunglasses and just kind of scoot in and out. No one will know.”
And I immediately went home and called Robin Roberts because, you know, I knew she had been through the same thing, and I’m thinking about what’s the venue that you go on and talk about something that’s this serious. And she said, “You got to get out in front of it immediately because as soon as it’s found out, the tabloids will have you dead, like in weeks.” [Laughs]
So I went on the next day, and it’s hard to even call a friend, like a good friend, and have those‑‑say those words, “I have to tell you I have cancer.” Like a lump forms in your throat, and, I mean, it was really hard going on the air to an audience that, you know, I had known and loved for years and years and go public with it.
But I‑‑and I‑‑you know, I’ll tell you something, Paige. My dad was a cancer surgeon. I always thought I’d grow up to be a doctor. I always thought I’d be maybe like really follow in his footsteps, but when I was just 13 and he was 51, he was flying back in our private plane from a cancer convention, American Cancer Society, speaking, and they crashed. And he was killed, and I think at that moment, I became even more‑‑just more embraced, this idea that I needed to carry on his legacy.
But I went to work in a hospital, summer before college, and, Paige, I found out real quick that scalpels and stitches and shots, they were not going to be part of my future. So I always had that little bit of regret, I think, that I didn’t carry on his legacy, even though I happily went into journalism, and, you know, you don’t need a scalpel sometimes to help people look for their best health and take care of themselves. Just being a disseminator of medical information, health information can help them. But I always had that little regret.
And, amazingly, Paige, that diagnosis, it kind of like dropped this gift in my lap, and within 24 hours, I said you have this unique opportunity right now to go out and learn as much as you can, share it, share the experience, take a camera in and, you know, video very appointment. Let people see what it looks like, what it’s like. Share the information, and you’re kind of going to be able to, like, pick up that baton and run with it and carry on your dad’s legacy. And that was the best thing I ever did because, all of a sudden, I went from being a patient, you know, kind of the victim, to being a warrior advocate, breast cancer advocate and educator, and it made my whole breast cancer battle much more palatable, if that’s the right word.
MS. WINFIELD CUNNINGHAM: Well, I want to hear more about your experience, but just going really, really quickly back to the issue about the density of the breast tissue‑‑
MS. WINFIELD CUNNINGHAM: ‑‑that’s really fascinating. You point that out. I’m actually thinking this summer‑‑this last summer, I had a friend who was diagnosed with breast cancer, and she actually mentioned that very thing that the density of her breast tissue‑‑and I had never heard of that before. Do you have any insights into why that message doesn’t seem to have gotten out there? Most women seem to be completely unaware that this is a factor in the screenings they should get.
MS. LUNDEN: I do because I came to realize that it was something that was important and that I didn’t know about it. So did other women know about it? And when I really looked into it, I found that for decades, they have‑‑in every mammogram we’ve ever had, our density is checked. It’s Box 1, 2, 3, 4, very fatty breasts, which a mammogram is great; kind of fatty breasts, which a mammogram is still‑‑you know, it’s still good; mostly dense or very dense. And those two categories along with your family history and everything else will deem whether you really need to have an ancillary test. Why? This is why.
Very dense breast tissue shows up white on a mammogram, and cancer shows up white on a mammogram. So doctors have said to me that it’s kind of like looking for a snowball in the middle of a snowstorm. So breast cancer can really be easily masked and hidden on a mammogram, and I didn’t realize any of that until I just like, thank goodness, went on that story with Dr. Love.
And so that day, they couldn’t see anything, but I clearly had, you know, a stage 2 triple‑negative tumor and a smaller ductal tumor about an inch away. And so because I had that ultrasound, it was found.
So then I started looking into, well how many women have this dense breast tissue. Almost 50 percent of all women have dense breast tissue. You know, when you’re younger, it’s dense, and then as you get older, it becomes more of a fatty breast, usually, like with a lot of women, and that’s very easy to detect breast‑‑yeah, breast cancer in that fatty breast. But for all the rest of us that continue to have very dense breast tissue‑‑and by the way, you can’t tell by, like, feeling your breast. A lumpy breast does not denote dense tissue. Only a mammogram can tell that.
Now, while we haven’t been included in this information from radiologists, our referring physician has. So I asked my radiology lab. I said, “I want to have every single one of the tests, the reports, from the last 15 years, since I started coming here.” They gave me all of them, the reports that went to the doctor, and every one of them at the bottom said, “This patient has very dense breast tissue, and an ancillary test is likely needed.” Did that ever get to me? No. So why was this critical information being kept from the patient, the person, the payee on that mammogram?
So I then found out that there was a huge lobbying effort going on to try to get legislation passed federally that would make mandatory mammogram reporting, that would make it mandatory for women to be given that same report that doctors are given.
And I asked Dr. Love, “Why? Why do you think this is?” and the answer I got was that in Western medicine the breast cancer surgeon gets from the belly button up and the gynecologist gets from the belly button down. I said, “Well, that makes no sense because you don’t go to a breast cancer surgeon until after you have breast cancer,” and she said, “Yep. That’s the problem.” And I said, “Well, why don’t the referring physicians tell us?” and she said, “I have to imagine it’s because the field of gynecology has just gone through so many lawsuits due to problems that can occur in childbirth, and their insurance has gone through the roof. And now here they sit. They’re reading it, but they know the insurance company isn’t going to pay for it. And they don’t want to get involved.” So that’s kind of the backstory of that.
But I went to Congress many times and, you know, knocked on senators’ doors and said we‑‑we couldn’t even get all of the female senators to sign on to this bill.
Now, in the meantime, there was an incredible grassroots organized‑‑it was called DenseBreast.com or‑‑AreYouDense. It was called AreYouDense.com, and by the way, you can go to AreYouDense.com and find out, you know, what the laws are in your area.
But the problem was‑‑is that some people lived in a state like mine, Connecticut, where that was the first state to mandate that women got that report, and it shouldn’t be that if you live in a state without that, that you don’t get that report. So we really fought hard for three, four years, and finally, that legislation, that federal legislation got passed so that no matter where you lived, they have to tell you whether or not you have dense breasts and whether an ancillary test is possibly needed.
I went and testified in front of the FDA, and they’re the ones that will eventually, actually write the wording. But we need the wording to be the same, no matter what state you live in, and we need to know. So anyone watching right now, if you’re a woman and you’ve started your mammograms‑‑and I hope that you will at 40 or even a‑‑you know, sometimes they do a baseline 35, but this idea of waiting, which, you know, unfortunately, American Cancer Society even like‑‑you know, they got their arm twisted and said, “All right, 45. Start at 45,” women are getting breast cancer younger and younger and younger. And that’s a whole other discussion as to what’s in our food and our everything that’s causing this to happen.
But I wouldn’t wait. I mean, I hear from women in their 30s and 40s all the time, every day on my social media platforms that are being diagnosed.
So, once you go for that mammogram at 40 and then you’ll go every single year, and you’ll find out if you have very dense breasts. And then if you do, you’ll have an ancillary test, and now we’re finally getting around to the point where insurance companies are going to have to, you know‑‑they’re really going to have to pay for that test, and it doesn’t make any sense not to, Paige. If you don’t pay for the test so that you catch breast cancer early, you’re going to spend a lot more money taking care of the woman that’s diagnosed in stage 3 or 4. It makes no sense not to let‑‑not to mention the humanity of not letting women find out early.
What’s the statistic? Ninety‑five percent of women diagnosed with breast cancer today will‑‑if they’re diagnosed in an early stage will live through it. So those are those words: “in the early stage.” So, if you don’t think you have any family history, don’t think that you don’t need to get a mammogram.
And I have to admit I went back. I found‑‑I looked at all my mammograms, and I realized, oh, my God, I went a year and didn’t get it. I missed a year, and I’m a journalist. I’m asking the questions of the experts. So we can’t‑‑we have to really, really be careful and take care of ourselves.
MS. WINFIELD CUNNINGHAM: Well, a helpful takeaway for all of our female viewers, and I’m two years away from 40, so for me as well.
MS. WINFIELD CUNNINGHAM: But I do‑‑I know that in your book, you talk about how you set out to learn everything about breast cancer that you could. How did you approach this learning process, and did it inform the treatment you pursued?
MS. LUNDEN: Very much so. Now, I come from‑‑I’m a lot older than you. So I come from an era, not to mention my dad was a doctor. I felt like I didn’t want to go for a second opinion. Like, I don’t want to, you know, insult the doctor, but fortunately, my three daughters in their 30s said, “Uh‑uh. You’re going for a second opinion,” and there the right was. Whenever you have something really big like a cancer diagnosis or a cardiovascular problem, whatever, you need to go for a second opinion and maybe even a third.
So the problem with the second opinion is sometimes you get it and it’s really different. I went to‑‑I got my first opinion from someone who had just come from a huge breast cancer conference, and she said there’s the standard of care, which is do surgery and then do ACT. And the way medicine is today‑‑remember this was in 2015‑‑’14‑‑everybody just kind of gets that treatment, but she said it’s going to change. And, boy, has it. And she said the new thinking for triple negative‑‑and the clinical trials have been good‑‑is that we do chemo first, and she said‑‑and there‑‑and I also want to add another drug, carboplatin.
So, but we took ACT, turned it on its head, started with the Taxol and added carboplatin, which is a pretty aggressive approach, but I had a really aggressive cancer. Triple negative is a very fast‑growing kind of cancer. So we did that, and in the clinical trials, a lot of the women had a complete pathologic response, like it was gone.
So, after I finished that first round‑‑I think it was eight weeks‑‑we decided to do this‑‑I went back in for another ultrasound, and we couldn’t see anything, and we’re like, “Wow. Maybe it’s actually all gone.” So she did the surgery, which, of course, was a way smaller surgery. If I had done it in the beginning, I probably would have had, you know, a mastectomy, but because I had a 95 percent success with that first round, that tumor was shrunk down to practically nothing. And the smaller tumor was gone. So, consequently, I just had to have the surgery and didn’t have to have any kind of reconstruction afterwards.
Then, of course, there was the big question. So it wasn’t completely pathologic, so do we go on now with another round of AC? And AC is really the traditionally‑‑that best, you know, the best thing for getting rid of triple negative‑‑or I guess any breast cancer but certainly triple negative. And I decided you don’t play games. You don’t play Russian roulette when you have breast cancer. So I went ahead and had the rest of the rounds of AC.
It was tough. It was a year of chemo. I had two blood transfusions, and then finally, I had six weeks of radiation. But, you know‑‑and I was bald for a year, and it’s not only bald. But I remember I was going on the TODAY Show, right when‑‑right in the beginning when People magazine was coming out, where I was bald on People magazine. And I looked in the mirror, and I washed my face that night, and as I wiped my face, I looked in the mirror, and I wiped off all my eyebrows and all my eyelashes, all in one fell swoop, like all gone. I called up my makeup artist and said, “You are really going to earn your money tomorrow,” and like you‑‑this real cancer patient is looking back at you.
But I think that, you know, just going out and being the journalist that I am and asking a million questions and taking in that camera and asking all those questions so that everybody else could hear the answers and see what chemo looks like and see what radiation looks like and hear why they chose to have me be facing down during my radiation instead of facing up so that you don’t have any scatter radiation, you know, against your chest wall or into your heart. You don’t want to end up with another‑‑yet another problem.
So, you know, I’m delighted that a crummy diagnosis like breast cancer gave me an amazing opportunity to go out there and be an advocate for every other woman having to face this battle.
MS. WINFIELD CUNNINGHAM: Well, I appreciate how candid you’ve been in your story and insights have been fascinating. So, Joan Lunden, thank you so much for joining us today.
MS. LUNDEN: Oh, thank you.
MS. WINFIELD CUNNINGHAM: And thanks to all of you for joining us today. To find out what interviews we have coming up, please head to WashingtonPostLive.com to find out more about our upcoming programs.
I’m Page Winfield Cunningham, and again, thanks for watching.
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