The recent history of breast cancer in America with “Radical” author Kate Pickert

Kate Pickert’s book Radical: The Science, Culture, and History of Breast Cancer in America tells the recent history of breast cancer research intertwined with the author’s own treatment experience after a breast cancer diagnosis in 2014 at age 35.

Living Beyond Breast Cancer CEO Jean Sachs, MSS, MLSP, spoke with Ms. Pickert about her experience with breast cancer and what she learned while writing the book. They discuss the developments that have changed breast cancer care over the last 30 years, how advocacy organizations have shaped those developments, and how advocacy itself has changed in recent years.

Radical: The Science, Culture, and History of Breast Cancer in America is now available in paperback at local bookstores and online.

 

Kate Pickert

Kate Pickert is the author of Radical: The Science, Culture, and History of Breast Cancer in America and someone who has herself been treated for breast cancer. Ms. Pickert is a former staff writer for Time magazine, where she covered health care, politics, and trends in modern American life. She is a journalism professor at Loyola Marymount University and lives in Los Angeles with her husband and daughter. Read more. 

Jean A. Sachs, MSS, MLSP

Chief Executive Officer, Living Beyond Breast Cancer

Jean began her work with LBBC in 1996 when she became the organization’s first executive director; she was named CEO in 2008. Jean brings a lifetime of women’s advocacy experience to her role as CEO. She lives LBBC’s mission everyday by speaking with newly diagnosed women about their needs and gaps in support. Read more.

Jean Sachs (00:01):

Hi everyone. It's Jean Sachs. I'm the CEO of Living Beyond Breast Cancer. And I am really excited because today I have the opportunity to talk to Kate Pickert, who is the author of “Radical: The Science, Culture, and History of Breast Cancer in America,” the book that I have kept by my side for quite some time now.

Kate, welcome and thank you for joining us.

Kate Pickert (00:27):

Thanks a lot for having me, Jean. I'm really thrilled to be here.

Jean Sachs (00:30):

Kate was a former writer for Time magazine and she's now a professor at Loyola Marymount University in California, and she was diagnosed with breast cancer at age 35. She wrote this book both from a journalist perspective, but also from her own perspective living and experiencing breast cancer. I have to say when I read this book — and I read it, and I'm not kidding, in one sitting — I felt like Kate had chronicled much of my professional career because I have been working in the breast cancer advocacy community since the early 90s.

You did such an amazing job of capturing a really, really complex [history], how the science has evolved and we've made steps forward and steps back, the advocacy. As soon as I finished it I sent you a note on LinkedIn. I sort of felt like a fan stalker, but I was like, “I need to talk to her.” And you were amazing, you got right back to us and participated in our conference. So thank you both for writing this book and for being so good to Living Beyond Breast Cancer.

Kate Pickert (01:45):

Thanks so much for reading. And also it's great to hear from someone who was really there for a lot of the turning points in the book, if you feel like I got it right. That's very heartening to me because I was, of course, looking back on a lot of this stuff as history because I was young, but also I just hadn't been involved in breast cancer at all really. Aside from reading a couple of stories about it over the years it wasn't a main topic for me. I had to do a lot of research and reporting so this is great to hear from you, Jean. Thank you.

Jean Sachs (02:16):

And I know your, your research really went back to the 1800s, so I just want to say I wasn't around then, but it was actually really helpful how you did the deeper history and how decisions were made.

Anyway, Kate is also going to join us for our upcoming conference called Wellness & Wisdom, and it's going to be October 24 and 25, so you'll have a lot of chances to hear more from Kate.

Kate let's start right away because I know your book is coming out in paperback, which means more people can buy it, so we're excited to tell people more about the content. As we said, you cover an expansive history of the changes in medicine and advocacy. Share with us just a few of the key takeaways about how breast cancer treatment has evolved and changed.

Kate Pickert (03:06):

Yeah, I mean, I think that the biggest step forward is the scientific discovery that there are many different types of breast cancer. This is a key and absolutely critical turning point to get us where we are today.

Doctors have been treating breast cancer with surgery for hundreds, if not thousands, of years. but for most of human history that we have recorded, it was thought that breast cancer was a single disease. And so the discovery in the middle part of the 20th century that a drug could be developed specifically for breast cancer that is fueled by estrogen, for example, which is the majority of all breast cancer cases are some type of this particular subtype that is fueled by estrogen. That was a discovery that was made in the early 20th century, late 19th century, but that discovery allowed treatments to be tailored specifically for that type of breast cancer, which is really the key to treating that type of breast cancer.

Years later there was a discovery of another subtype of breast cancer called HER2-positive breast cancer, which after the discovery of that, the great thing was a drug could be developed, a targeted drug specifically for that type of breast cancer.

If I had to choose one important scientific step forward with breast cancer, it's figuring out that there are different kinds and that they all need to need to be treated slightly differently in order to improve outcomes. So I think that's the biggest scientific advance I will say.

Also, I think that the patient experience has really improved, particularly over the last 20 years or so. I think that doctors and the real heroes of cancer treatment, nurses, have gotten a lot better at treating side effects and anticipating what the, for example, chemotherapy or surgery recovery experience will be and doing more to inform women and help them get through those phases as well as possible.

Also if somebody's talking about something that's changed, I mean, more women are surviving breast cancer than ever before. The mortality rate for breast cancer in this country is ticking down a little bit every year, very consistently. It's not as fast as we would like, but we are making progress inch by inch, continuously, every year.

Jean Sachs (05:31):

Right. That's a great overview. And I agree with you. I still am amazed every time I talk to a newly-diagnosed woman, they have no idea that breast cancer isn't one disease. You know, that when you're diagnosed, you have so many decisions to make, and I know that you experienced that as well. I think your book really helps put it all into context. I think it's so valuable for everybody to read, but particularly those that have been diagnosed.

In your book, you talk about some of the changes that have happened, including what some people might call the de-escalation of treatment. I like to think of it as more isn't always better, but I think when you're diagnosed with cancer, your first reaction is I want to do everything I can, I want to hit it as hard as I can. Tell us what that really means.

Kate Pickert (06:25):

Yeah. I can speak from firsthand experience, when you hear a diagnosis of breast cancer, hear that you have breast cancer, it's very scary and you have not a lot of time to learn about the disease and learn about treatments. You have to become an expert in a short period of time, if you want to have any agency over how your treatment unfolds, and it's hard to get your mind around it enough to think, “Well, maybe I don't need to do everything. Maybe I don't need to throw everything but the kitchen sink at this, maybe there's a smarter way.”

It's really hard to get to that place, so I'm very heartened that in the oncological community, there is an effort under this umbrella of de-escalation of figuring it out. There's a lot of science being done and that has been done on this about what's the least amount of treatment we can give to still get the best possible outcome.

That's like a driving philosophy behind breast cancer treatment now and I think it's amazing. For example, does every woman need chemotherapy for breast cancer? No. In fact there was a huge study that came out just a couple of years ago, a great long-term study called the TAILORx study, which basically, I talked to the author of this study for my book and he said [that] yeah, we expect 60,000 fewer women a year to get chemotherapy for breast cancer, just in this country alone, because of the results of that study.

This idea of like taking things off the menu, whether it's a big surgery and instead replacing it with a smaller surgery, like maybe no chemo and instead targeted drug therapy. That's the de-escalation overview and the pharmaceutical companies are working really hard with that philosophy in mind to try to develop targeted drugs that are more gentle than chemotherapy, which is, of course, indiscriminate and wreaks havoc on your body far beyond wreaking havoc on the cancer cells.

Jean Sachs (08:22):

Yeah. And I think what's been minimized is the impact of treatment on your quality of life afterwards. It's just been looking at let's treat this effectively, but let's minimize the long-term side effects. I think we still hear from newly diagnosed women that it's very confusing. They still think, sure, let's cut it out. That's the first thing to do.

I know another big change that you document is neoadjuvant chemotherapy which still think is confusing to people

Kate Pickert (08:56):

Yeah and I'd love to just explain briefly. Neoadjuvant, and your audience may be really familiar with that term, but neoadjuvant just means let's give the drugs, including chemo, before surgery so we can see if they worked and how well they worked. Because if you cut a tumor out, then you really have no proxy, no way of sort of measuring the efficacy of the chemotherapy or other drug treatment. It's common still to have surgery first, but there's definitely a lot of oncologists rethinking that traditional order of treatment because we can learn so much by treating cancer neoadjuvantly.

I write about this in my book and I write about it in my case. I had 5 months of neoadjuvant therapy chemotherapy, as well as a targeted drug given intravenously, and then I had surgery. And actually, in my surgery, there was no cancer left. It had all been killed off. Today there's no way to know that unless you do the surgery and take it out. But one of the questions that came to my mind was, what was the point of this surgery from a medical perspective? It didn't improve my health. It did give us information, which was critical, but that's a question that's kind of cutting edge and there are doctors looking at that as well with neoadjuvant therapy. Can we somehow figure out, through biopsies or imaging, if we can maybe avoid surgery even for women who have like really aggressive dangerous types of breast cancer. So that's not going to happen this year, but that's sort of like one place where there's a lot of science ongoing and I think it's really exciting.

Jean Sachs (10:31):

It's so exciting. And it's also a real re-education of the American public, because the way we've sold mammograms, we've sold surgery, we've sold bigger surgeries. So I think there's a big learning curve.

That's why you have to read Kate's book because you'll dig into this and it'll make a lot more sense. I have so many sections highlighted just to go back. And even though I feel like I know a lot about breast cancer, it's really going back and understanding pulling all the threads through.

In your book, you talk about some of the superstars in medical oncology and we thought maybe you could share some of your favorites.

Kate Pickert (11:19):

Yeah. I think there's probably two people that really have done a lot to change the way I think about science around breast cancer. One is Dr. Dennis Slamon, who's pretty well known in the breast cancer community. He's been around for a very long time and he is based at UCLA where I was treated, but that's not what makes Dr. Slamon incredible, a superstar. It's that — and I don't think this is a coincidence — but Dr. Slamon was right at the center of development for two, and there aren't very many breakthrough drugs in breast cancer, but two of them have come out of Dr. Slamon's lab or he's been intimately involved in the process. One is Herceptin (trastuzumab). He was very involved in the development of that drug that ended up being produced by Genentech in the 90s into the early 2000s.

Also Dr. Slamon was integral in getting CDK 4/6 inhibitors to the fore. And these are drugs like Ibrance (palbociclib) which has been a game changer for a lot of women with metastatic estrogen-positive breast cancer, and is I think probably on the road to being used more, even for early-stage patients with estrogen-positive breast cancer.

Dr. Slamon has been really good. He's stayed in academia. He works in an academic lab, but he collaborates with drug companies and he's been someone who's played big roles in the development of some really critical drugs.

The other doctor, I think a lot of people think of this doctor when they think of kind of big names in breast cancer is Dr. Laura Esserman, who's at the University of California, San Francisco.

Dr. Esserman is controversial and she's not afraid to say things that might upset people, but to try to upend some paradigms in the way we think about breast cancer screening, neoadjuvant therapy like you were talking about, and drug development.

And I think Dr. Esserman is really smart and she also went to business school along the way. I write in the book about how she's applied market research and sort of teamwork principles and things like that to how she approaches [her] leadership role at UCSF. She runs a big trial, a couple of big trials, actually, a couple of big, really important trials, so she's changed a lot about the way that I think about screening and treatment for breast cancer. So Dr. Esserman and Dr. Slamon, I don't think we would be where we are in terms of treatment or in terms of a more modern way of thinking about breast cancer without those two.

Jean Sachs (13:40):

Two great people. Of course, even though I know you're from New York, you're showing your, your West Coast bias because you do also talk about many of the East Coast doctors and some of the divide about the East and West Coast doctors and how they approach treatment, which we won't give that away. We'll make people read the book so they can learn that.

In addition to interviewing so many doctors, you also talk to patient advocates and shared their stories. Just thinking about Herceptin, some of the women that chained themselves to Genentech's fence to get Herceptin and how advocates have made a difference.

Share a little bit about what you learned about the breast cancer advocates.

Kate Pickert (14:25):

I think that when we think about, you talked about the 90s, Jean, and the 90s was when all, a lot of the big breast cancer advocacy organizations were founded or really came into their own Everything from the Breast Cancer Research Foundation, Avon, Komen, and so those folks were trailblazers, right? And the pink ribbon and all of that stuff. I'm critical of the pink ribbon of culture in my book, but I do think it was a symbol that did galvanize a community of women to say like, “Hey, we need to make our voices heard, talk about what we care about, raise awareness among our sisters and some brothers around the country about the risks of breast cancer.”

So I think there's a very rich history of advocacy in breast cancer, but I also think in the last 5 years, it's really modernized and become more targeted. I think that advocacy organizations are looking at issues that really need attention. Not issues like screening — screening is pretty well understood. We can still get rates better, particularly amongst certain populations that have lower rates, which can be problematic even though screening itself is nuanced and a complicated topic. But so many of them have pivoted from just pushing that to pushing like research for triple-negative breast cancer, which is a subtype that can be very deadly and we don't really know how to treat it very well yet. That's a place that needs targeted funding and attention.

They focused even more in recent years on women with metastatic disease who typically were not a focus of advocacy organizations. I have to hand it to the stage IV advocates, women who are themselves diagnosed with stage IV breast cancer and are out there on social media, or doing a die-in on the line in front of the Capitol, doing all kinds of things to get attention and raise awareness for those issues.

I think the advocacy has really helped shape the direction of science in a lot of good ways. Hats off to all of the women who went through so much personally and then decided to use their experience to help other people down the line.

Jean Sachs (16:38):

Yeah, that's so well said. For those that are newly diagnosed, everybody is a beneficiary of those that came before them and really the bravery that they just went through.

I know when you were writing this book, you weren't just writing it as an author. You also had been diagnosed with breast cancer and you'd been diagnosed young. How do you think that impacted your ability to report on it?

Kate Pickert (17:05):

Yes. I mean, I would not have been able to do a good job writing a book like this if I hadn't been through it myself because, and I know this because I had written a couple of stories about breast cancer before I was diagnosed I covered health care for Time magazine. I didn't really write a lot about science and medicine specifically, I mostly wrote about healthcare policy and insurance and the Affordable Care Act, some politics and things like that. But along the way, there had been a few issues about breast cancer that had come into the policy and political realm. I had written a few stories, but within a couple of weeks of my own diagnosis, I realized, I don't know anything about this. And to be frank, I felt even a little embarrassed that I had written about it, not knowing so much about it.

That's what made me want to write the book. I thought, “Oh my gosh, I am learning so much in these first couple of weeks.” Things like, oh! there are different types of breast cancer. I don't necessarily have to lose my hair, even though I'm going to get chemo. I could still maybe have kids down the line. All these things that I wasn't aware of.

I felt like, “OK, if I don't know this stuff, and I'm a healthcare reporter, surely there there's an opportunity to educate other people.” And there really wasn't a book that had come out in the last 10 years that told these stories of the history and context behind what's happening now.

I think the other part of my experience that was good for the book is I understand the emotional aspect of being a breast cancer patient. And breast cancer itself is an emotional disease on a lot of levels. We're talking about sisters, mothers, daughters. Doctors are emotional about it. Patients are emotional about it. The general public is emotional about it. I think I experienced a lot of my own emotions through it too. I think that gave me some … I knew how to talk to breast cancer patients about what they had been through to because of my own experience. So yeah, I think it was just really helpful.

And most of the book is not about me, but it was really important to share my story in the book so that readers could understand where I was coming from, that I did have a bias obviously and I had a personal stake in the story.

Jean Sachs (19:13):

Yeah. And I think you weave through your experience in a way that I think is really relatable. I think you do a great job with that in one of your chapters, you talk about when you went to the big medical oncology meeting, the San Antonio Breast Cancer Symposium, which is, we always say, where you have to be if you're in breast cancer. And you met Lianne Kraemer, a young woman living with metastatic breast cancer. And I know you spent time with the metastatic community. Tell us what you learned from that. And you've already touched a little bit on it, but maybe tell us a little bit more.

Kate Pickert (19:47):

Yeah. Lianne is an incredible person. There's a whole chapter in my book about her. We're still in touch, she's still doing okay, Lianne. She's an amazing person.

Through Lianne and other women in her shoes that I spoke to, I learned a couple of things. One, there's not nearly enough science about metastatic breast cancer. There are very few researchers devoted to studying that form of the disease specifically, and it's different than early-stage breast cancer in a lot of respect. It's different maybe on a chemical and molecular and biological level. Those patients are facing something that's very different than an early-stage disease.

I think that for a long time the scientific community treated these women, but also kind of wrote off the idea that their lives could be saved. Over time, I think there is a real questioning of that conventional wisdom. Some [women] diagnosed with metastatic breast cancer can survive for a really long time, sometimes more than a decade, sometimes even longer than that and that's a whole shift in how we think about this.

So I learned there was not enough science. I learned that the treatment's gotten a lot better. It's no longer an automatic death sentence, a stage IV diagnosis in breast cancer. I also learned about, when you talk about advocacy, those ladies like, wow. They are, despite everything they're facing, they are highly organized on Twitter, on Facebook they hold conferences, they raise money, they get on panels. They're really all over the place when it comes to the world of breast cancer conferences and things like that. So they've done a tremendous job of bringing light to this. And I just wanted to bring a lot of light as well to that topic specifically, because very little has been written about it. There's so much been written about early stage, but metastatic hasn't been written about very much, at least in the popular press.

Jean Sachs (21:44):

You're right. And I think that is the breast cancer that kills people and a lot of people don't realize, they're like “What's metastatic breast cancer?”

And I agree the advocates are they're fearless. As we know, many women can do well, they can switch treatments. Some can do well on one treatment for a really long time, but their role is different because they're always in treatment.

That really does lead into our fall conference where you're going to moderate a panel called “Early-stage breast cancer and metastatic breast cancer: Being allies for each other.” And I think this is such an important topic because for so long, if you had early-stage breast cancer, the last person you wanted to meet was someone with metastatic, exactly who you didn't want to be. But what we're starting to see, and in some ways, if you're a metastatic, you don't want to see the early-stage person. We're starting to see more support and more understanding, which I think is so important because that's going to help move the needle.

What does it mean to you to be an ally for the metastatic community?

Kate Pickert (22:53):

Yeah, I think that I don't consider myself an advocate. I am a journalist, I'm not an activist. I consider myself someone who is documenting what's happening and then maybe trying to ask provocative questions based on the perspective I've gained through a lot of learning and research and reporting. But I think if there is an allyship between someone like me and the metastatic community, or just the breast cancer community in general, it's to shed light, right. It's to educate other people, it's to get the message forward in a different way.

So my role as a journalist, I think has a certain type of power that an advocate doesn't have, right? Because I'm taking everything into consideration, trying to contextualize, et cetera. One of the ways I'm trying to be an ally is write a chapter in my book about metastatic disease. Then I was able to get a book excerpt to run in Time magazine when the hardcover came out and the chapter we chose was the chapter about metastatic disease. So even folks who didn't read the book may have seen that.

I have a story coming out next month in Elle magazine about metastatic breast cancer. I'm trying to write about it and be an ally in that respect. And then also, I love to come talk to folks like you and help facilitate dialogue and further education. I mean, that's my job as a journalist is to get conversations going and to help hopefully make people a bit smarter.

Jean Sachs (24:22):

And I think that's great because I have to say it, it really hasn't been that long. It wasn't that long ago when people really didn't ever talk about metastatic and you know, a lot has changed in the last 5 years, but it really wasn't that long ago. So we do have to keep just keep that pressure on 'em so that people really do understand what metastatic breast cancer is and how it is different and the kinds of support they need because many women living with metastatic don't look sick.

I know that it's a horrible thing when you say, “Oh, you look great.” And they're like, “Really? Well, I've got cancer in my liver, my lungs, my brain.” But you know, it's not so visible to the general public.

Before we end, tell us how people can get your book and any other reasons why they should read it.

Kate Pickert (25:13):

Yeah. So the [paperback] comes out, I think September 29, and you can preorder it on Amazon. I'm also a big fan of IndieBound or ordering from your local independent bookstore. Independent bookstores are suffering mightily with the pandemic. The list price, I think is the same on Amazon or an independent bookseller website. It might be like $2 more on Amazon, but Amazon doesn't need your money, but the independent bookstore might. I don't know what bookstores are open across the country, but it will be in physical bookstores as well, nationwide. Preorder it now, and yeah, thanks a lot for having me. I'm thrilled to think that the book could get a new audience through the paperback edition and that I can keep going on and keep living as a resource for folks.

Jean Sachs (26:03):

Exciting. And I will just say that, I think this book is a quick read and if you're interested at all in science and how things happen and how we step forward and then move back. I mean, it's almost like a thriller.

Really well written, really engaging.

Kate, we so appreciate you sharing your insights, your knowledge being there for the community. As you said, you're not really an advocate, you're a journalist, but I think it's the journalists that amplify these stories. Without people like you, we just don't get the messages out. We really look forward to having you at our virtual conference, October 24. So everybody look for that. And then anyone who's listening who needs immediate support, remember we have closed Facebook pages, just look, log on to LBBC.ORG ask to be joined and we'll connect you with one of those communities so you can get support in real time. Otherwise I wish everybody well stay safe and stuff.

Stay healthy.

Kate Pickert (27:03):

Thanks, Jean, for having me and thanks for all the work that you and LBBC do to help a lot of people on a wide scale. Thank you.