When Susan Love joked that a group of breast cancer advocates in Salt Lake City should march topless to George H. W. Bush’s White House, she didn’t expect to be taken seriously.

“When we said, ‘We should march topless on the White House,’ they were ready,” Love, founder and chief visionary officer of the Dr. Susan Love Foundation for Breast Cancer Research, said to The Cancer Letter. “The idea of all these topless women marching on the White House was enough to launch the breast cancer advocacy movement.”

It was June of 1990, just after Love published her book, Dr. Susan Love’s Breast Book, which walks its readers through the radical changes in the science of breast cancer at the time. She was on a book tour that landed her in Salt Lake City, where around 600 people showed up to hear her speak.

“What I really learned when we were at this meeting in Salt Lake City, is if you have the right answer at the right time, people are ready. They were ready to do something,” she said. “It was a time when we had science, and we had the NSABP doing research and randomized trials, and we could start to change how we treated breast cancer based on data, which was really something new and novel.”

The science and the culture of breast cancer activism was changing.

“We had a randomized controlled trial comparing wide excision or lumpectomy and radiation, to mastectomy. The fact that women were willing to be randomized as to which they got, by itself, was pretty remarkable,” Love said. “It turned out that lumpectomy or wide excision, followed by radiation, was just as good as mastectomy, much to everybody’s amazement.”

Breast cancer advocacy of earlier years—marked by building awareness, something critics called “pinkwashing”—was less political and not nearly as confrontational, Love said

The AIDS activists had inspired a new kind of activism, and breast cancer activists took note. The National Breast Cancer Coalition, an umbrella group that revolutionized the goals and tactics of cancer patient advocacy, was emerging, Love said.

“This was, ‘We want to be at the table. We want to be making the suggestions and making sure they happen, not just marching around wearing pink,’” she said. Also, most of these activists were not physicians or scientists, or involved in treating or studying breast cancer at all.

“They were regular people who had had breast cancer, or their mother had had it, or their sister had had it, and they were eager to hear the science and they were eager to look to how we could end it,” she said.

“Women didn’t know that much about breast cancer, and we wanted them to be able to represent what was going on,” Love said. “We started educating them in a program called Project LEAD, and we got different scientists to come, and over a weekend, we would educate them on breast cancer.”

Now, Love and the National Breast Cancer Coalition had a group of educated and excited activists willing to fight.

“That was really good, because when we then went and tried to lobby for more money, all the women were very educated,” she said. “[Congress] couldn’t just say, “Oh, don’t worry, dear. We’ll take care of it,” because we already knew what was needed, and we could demand it.”

In Love’s eyes, breast cancer and AIDS activists set the stage for modern day disease advocacy.

“Now, you see people who are involved with all kinds of diseases—from multiple sclerosis to AIDS,” Love said. “You’ve got people who get a disease—always a percentage of them will end up trying to make it better…and this idea that regular old people, or people with a disease could be responsible for figuring it out and maybe ending it, was really started with AIDS and with breast cancer.”

By 1993, activists and the NBCC had secured the $300 million from Congress they had long fought for. Love and Kay Dickersin, a breast cancer survivor and epidemiologist, realized it was time to educate breast cancer advocates, through a program called Project LEAD.

A video interview is posted above.

Alexandria Carolan: Let’s start with your book, Dr. Susan Love’s Breast Book. It was published in 1990. Why then? What was essential about publishing a bible on breast cancer at this time?

Susan Love: Well, it wasn’t exactly my intent to publish the bible on breast cancer. But it was a time when there were a lot of changes happening in breast cancer, and people were starting to do breast conservation, lumpectomy, and radiation. And before that, it had been, “everybody should have a mastectomy or a radical mastectomy.”

And so, it was a time when we had science, and we had the NSABP doing research and randomized trials, and we could start to change how we treated breast cancer based on data, which was really something new and novel.

And so, that was the purpose of The Breast Book, and it went through many editions actually, and has been translated into many languages as well. And now, of course, I think it’s much less necessary because we have lots of ways of getting information about breast cancer, but then, there was nobody explaining anything. It was just, “We’ll take care of you, dear. Don’t worry about it.”

And as you mentioned, this was kind of a fascinating time to publish a book like this, and really essential. What was changing about the science of breast cancer at the time? What was known?

SL: Well, we were just making some big understandings. Prior to that, we’d been focused on surgery as the answer. First, it was radical mastectomies. You wanted to take the breast, the muscle, and all of the lymph nodes, which caused us a lot of problems.

It did cure some people, but it still caused a lot of problems. Then we went to modified radical mastectomy, where you left the muscle, but you took the breast and all the lymph nodes. And then finally, we had a randomized controlled trial comparing wide excision or lumpectomy and radiation, to mastectomy. The fact that women were willing to be randomized as to which they got, by itself, was pretty remarkable.

And it turned out that lumpectomy or wide excision, followed by radiation, was just as good as mastectomy, much to everybody’s amazement. It really pushed us more into the, “Gee, we can do breast conservation. We don’t always have to do a mastectomy or a radical mastectomy,” and that was a big step forward.

And what did this step forward mean for you, for your activism, your work, and your book?

SL: Well, I think what it really meant was writing the book, you needed to explain to people why we could do this. Because you couldn’t just say to a woman who is not a physician, “OK, well, we used to do mastectomies, but now we’re just going to take the lump out and do radiation. It’ll be just as good.”

I mean, people were really not up for that. You had to explain why, and the fact that taking the lymph nodes out was helping you to know whether you needed to add something like chemotherapy, and then taking the lump out and radiating it took care of the breast.

This was complicated for a lot of women at that period of time, where we were not used to giving the patient that much chance of making the decision. It was often done by the doctor. So that itself, giving the patient a voice in the decision, and then the change in the decision between breast conservation and mastectomy were really big shifts.

That’s so interesting that patients were able to have more of a say at this time. I would imagine that this kind of science and this approach was very different than what you were taught in your medical training. Is that right?

SL: Well, it was still considered—actually the best thing to do was to have a trial to randomize people, but it was much harder to randomize people to one operation or another, than it was to one drug or another. Somehow the drugs didn’t seem quite such a big deal, but doing a different operation based on just randomly pulling it out of a hat was a big deal at that time.

And the other thing was that there were more women going into surgery. There were very few women when I went into surgery, and that’s why I think they got drawn into breast surgery, because they weren’t given the chance to do big operations, gallbladders, or big abdominal operations. But breast surgery was something that women were allowed to do. So that was the other factor in those days. More women, as well as more consideration of breast conservation.

And back in the days of your medical training, were you taught that lesser surgeons performed lesser mastectomies? Is that something you’d ever heard of?

SL: I had never heard of that, but I was taught that there was a sort of a sense of macho surgeons were going to do the bigger operation. And maybe some people, the people who were doing lesser operations were just not so macho. So, there was a little bit of that, but I never heard about the lesser surgeons.

But going forward, let’s get back to the book. You’re on the road, you’re promoting it, you end up in Salt Lake City. What happens there?

SL: Boy, I don’t even remember. You got to give me another clue.

Well, I know that when you had been to Salt Lake City, I know that about 600 people showed up to hear you talk about your book, and they were excited and passionate about breast cancer activism. What did this feel like?

SL: Well, in Salt Lake City, we had a big crowd of women, much more than we had previously, and at the end, I said, “I don’t know what we’re going to have to do to change how we treat breast cancer, and to cure breast cancer. Maybe we should all march topless on the White House.”

And George Bush Sr. Was in the White house, so he was not really keen on that idea. The idea of all these topless women marching on the White House was enough to launch the breast cancer advocacy movement.

That sounds like an amusing thing to happen. And were you surprised that people kind of took to this idea?

SL: I was surprised. I mean, I was using it just as a line in a talk, and they were ready to go. It really was the beginning of the end, I think, of some of the older ways of treating breast cancer.

And did this actually happen, this walk to Washington topless?

SL: No, not topless. It didn’t happen topless, but it did happen that we had had a march on Washington. Now, can I remember the details? No. But we did, and that’s a Fran Visco conversation.

Amazing. Well, we’ll actually get back to that later. But I’m curious about, what did this moment in Salt Lake City teach you about politicizing breast cancer?

SL: Well, I think what I really learned when we were at this meeting in Salt Lake City, is if you have the right answer at the right time, people are ready. They were ready to do something. There had been enough information out there. There were books, there were enough talks that you just had to light the fire, and they were ready to go. And I think that lesson taught me throughout my career, that you just have to be aware of the moment, and what’s the right idea for the moment.

I think that’s a great point. And kind of touching on what we had just started discussing, this sort of grassroots activism, this excitement. We actually recently ran an interview with Fran Visco in which she kind of describes this grassroots exciting activism for breast cancer research funding at the time. Can you describe—what was it like to be there? What was it like to witness and experience and take part in?

SL: It was quite, it was fun and exciting to be there, and it was interesting because most of the people that were there were not physicians or scientists, or involved in actually treating or studying breast cancer.

They were regular people who had had breast cancer, or their mother had had it, or their sister had had it, and they were eager to hear the science and they were eager to look to how we could end it.

And so, it was not a bunch of scientists sitting in a room coming up with things, it was really a grassroots effort with some scientists that liked grassroots, sort of thrown in, and that put things together.

And because the women didn’t know that much about breast cancer, and we wanted them to be able to represent what was going on. We started educating them in a program called Project LEAD, and we got different scientists to come, and over a weekend, we would educate them on breast cancer. How does cancer work, and how can we treat it?

And that was really good, because when we then went and tried to lobby for more money, all the women were very educated.

They couldn’t just say, “Oh, don’t worry, dear. We’ll take care of it,” because we already knew what was needed, and we could demand it.

That’s very cool to hear about people kind of taking things into their own hands. Another thing I wanted to discuss—it sounds like this type of activism was very different than what existed before it. Paul had mentioned there was Rose Kushner, there was Nancy Brinker, there was Y-ME. How was this movement different?

SL: Well, it sort of evolved around the same time as the AIDS movement, because really, AIDS was the first time we had people with a disease lobbying and really involved in the research. And so, it was around that time, and that’s what really pushed us.

Because Nancy Brinker [and] Y-ME was wearing pink, and there was some lobbying, but it wasn’t the same as what was started with the Breast Cancer Coalition, where really this was, “We want to be at the table. We want to be making the suggestions and making sure they happen, not just marching around wearing pink,” and I think that made a big difference.

Right. That makes a lot of sense, which leads perfectly into my next question, which is just about this meeting in Washington with what would become the NBCC. Who were the players involved? What stances did everyone have?

SL:  Well, I don’t know that I can remember all of it, but I think the people who showed up in Washington were really ready, and when we said, “We should march topless on the White House,” they were ready.

They actually had already come to the position of, “We need to do something and we’re going to have to do it ourselves.” So, it was really a matter of rounding people up and coming up with time.

And while I was good at rounding them up and getting them excited, Fran was really good at leading them into the National Breast Cancer Coalition and also into all of the efforts thereafter.

So all of this is almost leading up to just this overwhelming support for breast cancer funding. Did it become sort of mainstream in a way, outside of the people who already knew about it and were passionate about it?

SL: I think particularly when we moved, it became more pink. That when wearing a pink ribbon or wearing pink was a symbol of breast cancer, then it became more mainstream, because then it didn’t seem so crazy to wear pink. It didn’t seem like you were rebellious.

It was a sign that we should pay attention to breast cancer, we should figure it out, and know how to cure it. And of course, the women, and the women with breast cancer were eager for that. So, I don’t think it was quite so bad once it got bigger. It was when it was smaller that there was a beginning of some problems.

So, it sounds like this movement to wear pink, this came after all of this grassroots excitement, this talk of walking topless to George Bush Sr.?

SL: Yes. Yes, yes, yes, yes, yes. That was their way of sort of, “Let’s calm it down, make it a little less threatening,” and so, then people started wearing pink.

Right. But I mean, I would imagine that before the pink, when there was all this talk of excitement, what moments from this sort of grassroots activism really kind of stood out to you? Or what still kind of sticks in your mind now about it all?

SL: Well, when we went to the White House, and I believe it was George Bush that we were with, that was really quite exciting.

Because that was the first time it really was clear that people were taking this seriously, and that it wasn’t just us complaining, and standing up and marching, but that people were actually paying attention to the problem. And so, the fact that we could do it.

I mean, AIDS had just been a big problem, and the people with AIDS really got very involved in raising money and in the research, and how to treat it and how to cure it. And so, that was the example that the people with breast cancer took on, and I think to their benefit.

That’s a great point. And all of this, ultimately, and I talked a bit about this with Fran on her mission to get that $300 million more. But in 1993, you all did get that $300 million. And so, what now? What happens after that? What are the next steps?

SL: First of all, we had to educate people in the science, because if we were going to figure this out, it couldn’t just be the few physicians or the few researchers who were involved.

And so, Project LEAD was developed, and with Patty Dickersin and myself.

She was an epidemiologist and I’m a breast surgeon, and we did these small program groups where we educated people in the science, because until they really understood the science, we weren’t going to make a difference.

And so, that was sort of step two, and it recruited a whole lot of people, both who wanted to know more, and also who were eager to change breast cancer and to figure out how to either prevent it or cure it.

That’s great. And this sounds like such a bright future. What did this signify for the future of breast cancer advocacy for raising money and things like that?

SL: You mean now? Or then?

Then.

SL: Project LEAD and having a group of educated women who were educated in breast cancer and in the science was really important, and then we were demanding more research money. And so, we demanded that we get it from the Department of Defense.

We said, “Enough money has gone to war and fighting it. We need money to actually fight breast cancer.” And so, the program was developed in the Department of Defense, in order to give out research money for breast cancer research, and that was another big move forward that we actually were able to accomplish.

Got it. And we touched on a lot of points during this timeline, but is there anything else you’d like to add, or anything that’s really important to this story?

SL: One of the things that I think is really important is that this whole breast cancer movement, just along with the AIDS movement, really changed how we look at diseases, and how we look at trying to get more research and trying to get more people involved in it.

And so, now you see people who are involved with all kinds of diseases—from multiple sclerosis to AIDS. You’ve got people who get a disease—always a percentage of them will end up trying to make it better, trying to figure it out.

And this idea that regular old people, or people with a disease could be responsible for figuring it out and maybe ending it, was really started with AIDS and with breast cancer.