When Stephanie Graff was a breast oncology fellow in 2010, one of her patients brought a marked up copy of “Dr. Susan Love’s Breast Book” to an appointment.

“One of my patients had brought it in and was using it almost as her cancer notebook, and had pages flagged and said, ‘Well, what about this? What about this? It says here…,’” Graff, director of Breast Oncology at Lifespan Cancer Institute and medical advisor to Susan Love’s foundation, said to The Cancer Letter.

The Dr. Susan Love Foundation for Breast Cancer Research is now the Dr. Susan Love Fund for Breast Cancer Research at Tower Cancer Research Foundation.

It was the first time that the book, written by Susan Love, a breast cancer surgeon, activist, and founder of the Dr. Susan Love Foundation for Breast Cancer Research, had shown up on Graff’s radar.   

“Dr. Susan Love’s Breast Book,” which sold a half-a-million copies and was dubbed the “de facto bible for breast cancer patients” in The New York Times,  also became an essential part of Graff’s oncology education.

“I actually ended up buying my first copy after that, and read it almost as an adjunct to my breast oncology scientific training,” said Graff, who is also co-lead of the Breast Cancer Translational Disease Research Group at Legorreta Cancer Center at Brown University and associate professor of medicine at the Warren Alpert Medical School of Brown University.

“It ended up providing some foundational knowledge on things that I hadn’t known, or hadn’t been exposed to yet, that allowed me to then dig deeper into the science side of that base knowledge that Dr. Love just outlined so eloquently in the first version of the book that I bought,” she said. 

“Dr. Susan Love’s Breast Book” was first published in 1990. Now, Graff is a contributing author of the seventh edition, the most recent version of the book published in 2023.

The book was also a catalyst for the formation of the National Breast Cancer Coalition (NBCC).

While Susan Love was on tour promoting the book in June of 1990, she encouraged a group of breast cancer advocates in Salt Lake City to 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 said in a 2021 interview with The Cancer Letter. “The idea of all these topless women marching on the White House was enough to launch the breast cancer advocacy movement.” 

At the time, the science and culture of breast cancer activism was changing. People were ready to fight for more breast cancer funding.

“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,’” Love said. “Also, most of these activists were not physicians or scientists, or involved in treating or studying breast cancer at all.”

The momentum garnered by Love was channeled into a larger breast cancer grassroots movement, leading to the founding of NBCC—with Fran Visco at the helm—in 1991 (The Cancer Letter, Sept. 10, 2021).

Love died in July 2023, at 75 (The Cancer Letter, July 7, 2023).

What’s the secret to this book remaining so vital that it has withstood  seven editions over the span of more than 30 years? 

“I’ve now had the privilege to read numerous patient-centered breast texts and none of them have ever been as comprehensive, as thick, as deep into the knowledge and the science as Susan’s work—and subsequent editions and revisions of the ‘Dr. Susan Love’s Breast Book’ have been,” Graff said.   

The book challenges the patient to think about their diagnosis and ask questions, Graff said.

“And I found Susan’s colloquialisms, her sayings and expressions, and examples of ways that she converted a complex scientific topic into patient-centered thought, really aligned with my own,” she said.

The book includes a series of “Susan-isms,” Graff said—ideas and terms that traditional texts on breast cancer may not inform the reader about.

“The Susan-ism that I perhaps most intimately burned into my mind, which actually may be more of a result of then going on to work with her, is the concept of collateral damage,” she said. “That if you’re going to do any treatment and it’s going to reduce your risk of breast cancer occurring in the first place, or coming back later by X percent, but there’s an associated risk of Y percent that you’re going to develop numbness and tingling in your fingers and toes that leaves you disabled, or causes you to have joint pain that bothers you mentally and physically every day for five or 10 years. Is the algebraic equation balanced for you?” 

The idea of collateral damage involves a nuanced conversation between patient and doctor, Graff said.

“The idea of really pushing back on the scientific community with the harm that cancer therapy can sometimes cause, Dr. Love was pretty revolutionary in saying ‘This isn’t OK, and we have to find ways to do better and be better,’” she said. 

Love’s activism and strong belief in patient advocacy ensured the book’s longevity, Graff said. 

“That really speaks to who she is, and what she believes and champions, hopefully what I believe and champion, which is really not to underestimate the ability of a patient to learn about and understand their disease from a scientific perspective,” Graff said. 

Love became a physician at a time when there were not many women physicians. She became a surgeon in a competitive East Coast environment dominated by men. She married her wife, Helen Cooksey, in 1991. In 1993, they became the first same-gender couple to legally adopt a child—their biological daughter—in the state of Massachusetts.

“And she rejected the idea that women are less-than—and she extended that approach to her own education, and her own career, to the patients who she was caring for,” she said. “It absolutely horrified her that women would go to the operating room not knowing if they had cancer, and wake up with a mastectomy.” 

Providing patients with knowledge about their treatment is a crucial part of the book, Graff said.

“And so, engaging patients in the decision around lumpectomy versus mastectomy, and the role of biopsy, to empower a patient to have those discussions and make those decisions, those are all hallmarks of her career,” she said. “And her legacy really involved the San Antonio Breast Cancer Symposium patient advocacy from the inception.”

Over the years, the book has changed, along with the science and language of breast cancer. 

“As her evolution as an advocate for the rights of others has evolved, the language in the book has also evolved,” Graff said. “She’s been very intentional about including women of color, including men with breast cancer, in the language of the text.

“The way that those communities are thought about and included, and their particular needs and conflicts, are specifically addressed in the text has evolved over that time too,” she said.

In the most recent editions of the book, Love—along with Graff and Lauren Green, another medical advisor to the book—have revised significantly. “We each sort of had our brainchild in this edition, revising the chapters on everything from endocrine therapy, to chemotherapy, to chemotherapy side effects, just from the sixth edition to the seventh edition,” she said. “It’s fundamentally different. The way we treat, the drugs we use, the thinking and the approach to neoadjuvant chemotherapy before surgery versus adjuvant chemotherapy after surgery, has completely changed between those two editions.

“I found that there were large sections that were just scrapped and rewriten because so much has changed. I think if you go back to the earliest editions of the book, even things like sentinel lymph node biopsy, or partial breast irradiation, were not mainstream, and were not a part of the routine care of women across the country or across the globe.

“Just seeing that evolution, really seeing the science of survivorship and the science of supportive care change, has been a hallmark from earliest editions to latest editions.”

Transcript

Alexandria Carolan: I’d love to just start with some background about when you first heard about “Dr. Susan Love’s Breast Book,” and what this meant to you at the time.

Stephanie Graff: My first exposure to “Dr. Susan Love’s Breast Book” was during my breast oncology sub-fellowship. One of my patients had brought it in and was using it almost as her cancer notebook, and had pages flagged and said, “Well, what about this? What about this? It says here…”

And I thought that the insights from the book were just absolutely wonderful in terms of how it challenged the patient to think about their diagnosis and ask questions about their diagnosis. And I found Susan’s colloquialisms, her sayings and expressions, and examples of ways that she converted a complex scientific topic into patient-centered thought, really aligned with my own. So, I actually ended up buying my first copy after that, and read it almost as an adjunct to my breast oncology scientific training. It was just that inspiration of a different way to think about how we communicate breast cancer.

And there are a lot of interesting historical pearls embedded in the book, in terms of how breast cancer has transformed over the last several decades, which was interesting to me, as a breast medical oncologist, to read. It’s a very comprehensive guide to breast health. It’s not just breast cancer, it’s survivorship, it’s prevention, it’s diagnostics, it’s surgical techniques, stuff that’s maybe not traditionally covered in a medical oncology training. It actually ended up providing some foundational knowledge on things that I hadn’t known, or hadn’t been exposed to yet, that allowed me to then dig deeper into the science side of that base knowledge that Dr. Love just outlined so eloquently in the first version of the book that I bought.

So, you learned about this through a patient, and you talked about those really interesting colloquialisms and sayings that Dr. Love included. Is there anything that really stands out to you, that at the time you were like, “Oh wow, I didn’t know this or I didn’t even think this before,” or that she put words to something you had been thinking?

SG: The Susan-ism that I perhaps most intimately burned into my mind, which actually may be more of a result of then going on to work with her, is the concept of collateral damage. That if you’re going to do any treatment and it’s going to reduce your risk of breast cancer occurring in the first place, or coming back later by X percent, but there’s an associated risk of Y percent that you’re going to develop numbness and tingling in your fingers and toes that leaves you disabled, or causes you to have joint pain that bothers you mentally and physically every day for five or 10 years. Is the algebraic equation balanced for you?

And the truth is that that’s actually a really nuanced conversation that I’m glad I get to engage my current patients in. But the idea of really pushing back on the scientific community with the harm that cancer therapy can sometimes cause, Dr. Love was pretty revolutionary in saying “This isn’t OK, and we have to find ways to do better and be better.”

With the concept of collateral damage—you mentioned that you were hearing about things in the Dr. Susan Love’s Breast Book that weren’t necessarily traditionally covered in your medical education. Is that an example of one of those things?

SG: I mean, obviously we talk about toxicity of therapy and the side effects of the treatments that we prescribe, but Susan just approached it in this much more assertive, patient-centered way that really empowered a reader to be able to sit with their physician and say, “This is not a tradeoff I’m willing to make,” or “Help me place these two sides of the equation on the scale so that I can decide if that balance is acceptable for me.”

And I hadn’t seen physicians, previously, be as critical of the negative side. And I know that you can identify with that as a science writer, and our audience can identify that with their interest in this topic by reflecting on every podium presentation you’ve ever heard where we stand up and say that these side effects are “acceptable” or “well tolerated”, or these kind of buzzwords that we use, though don’t really break it down for what that might mean for a concert violinist who now has numbness in their fingers. Or a patient who stands on a factory job for an eight-hour shift and now has such pain in their feet or their knees that doing that job is limiting. And so, to really be able to reflect on it in a different way than I had before was fresh.

Absolutely. And one thing I thought was really interesting is how you said that your patient had dog-eared these pages, interacting with it like a journal of sorts. Is that something you’ve come across a lot? I know not every patient might use it that way, but why is this book helpful and useful for patients, providing information for them that they can’t find written in a similar way elsewhere?

SG: This famous New York Times review of the “Dr. Susan Love’s Breast Book” said that it’s the breast Bible for women, the breast Bible for patients, honestly. And that very comprehensive nature of the Dr. Susan Love Breast Book is so unique. I’ve now had the privilege to read numerous patient-centered breast texts and none of them have ever been as comprehensive, as thick, as deep into the knowledge and the science as Susan’s work—and subsequent editions and revisions of the “Dr. Susan Love’s Breast Book” have been.

And I think that that really speaks to who she is, and what she believes and champions, hopefully what I believe and champion, which is really not to underestimate the ability of a patient to learn about and understand their disease from a scientific perspective. Dr. Love became a physician at a time when there were not very many women physicians.

She became a surgeon at a time where there were not very many women surgeons in a very competitive East coast environment, and she rejected the idea that women are less-than—and she extended that approach to her own education, and her own career, to the patients who she was caring for.

It absolutely horrified her that women would go to the operating room not knowing if they had cancer, and wake up with a mastectomy. And so, engaging patients in the decision around lumpectomy versus mastectomy, and the role of biopsy, to empower a patient to have those discussions and make those decisions, those are all hallmarks of her career. And her legacy really involved the San Antonio Breast Cancer Symposium patient advocacy from the inception.

And all of those are just hallmarks of how Susan valued communication, and she really embedded that in the book. And so it’s not often that patients pull the “Dr. Susan Love’s Breast Book” out of their handbag—in part because it’s huge, and so it’s probably a burden to carry around with them and dog-ear. I have actually said to Susan, and to our colleagues at the Dr. Susan Love Foundation that I think we need a workbook, or a study guide or the notebook version, that is more portable for patients who are hoping to use it like that.

But I do think that patients take it home, and review it and dog-ear it, and transcribe their specific questions into their notebooks, and their iPhones, and whatever devices that they’re using to communicate and reflect on their diagnosis with their care team.

It’s interesting to hear you talk about even the use of iPhones and things like that. When this book first came out, I think the first edition was in 1990. How has the book changed and evolved over the years?

SG: I think that it’s changed as the science has changed, and think about how far we’ve come since 1990 in revising this edition. One of my key values is that Susan is a breast surgeon, I am a breast medical oncologist, and one of the other advisors is a breast radiologist who contributed to the newest edition.

We each sort of had our brainchild in this edition, revising the chapters on everything from endocrine therapy, to chemotherapy, to chemotherapy side effects, just from the sixth edition to the seventh edition. I mean, it’s fundamentally different. The way we treat, the drugs we use, the thinking and the approach to neoadjuvant chemotherapy before surgery versus adjuvant chemotherapy after surgery, has completely changed between those two editions.

I found that there were large sections that were just scrapped and rewritten because so much has changed. I think if you go back to the earliest editions of the book, even things like sentinel lymph node biopsy, or partial breast irradiation, were not mainstream, and were not a part of the routine care of women across the country or across the globe.

Just seeing that evolution, really seeing the science of survivorship and the science of supportive care change, has been a hallmark from earliest editions to latest editions. And then I think another thing that’s really changed is the inclusivity. Dr. Love has been a champion for that.

I’m sure in her story that you’ve encountered, you know that Dr. Love was married to a lovely woman, Helen, and they were the first couple in Massachusetts to adopt as a same sex a couple, their daughter, who’s biologically their daughter, and that ended up in the Massachusetts State Supreme Court.

And so Dr. Love has really been an advocate, not just in cancer research, but also in gay rights and parental rights. And I think that as her evolution as an advocate for the rights of others has evolved, the language in the book has also evolved. She’s been very intentional about including women of color, including men with breast cancer, in the language of the text.

The way that those communities are thought about and included, and their particular needs and conflicts, are specifically addressed in the text has evolved over that time too. And that’s something that’s really refreshing and powerful to see.

You mentioned these Susan-isms earlier on, and I’m curious, do you feel that the current edition of the book maintains the tone that she was going for in that first one that you read?

SG: I hope so. One of the things that Susan and I really connected about when I first joined the organization was just our passion for effective patient-centered communication. And there were times reading the last version of the text that I thought, “Oh, I have a great analogy that I use to describe that for patients. Or I have a great anecdote, or that description maybe doesn’t resonate in our current culture as well anymore.”

We can find ways to update it. And I think Susan was very, very excited and enthusiastic about making sure that everybody’s voice is reflected, but there are loads of Susan-isms that persist and that are just so perfect. I can’t imagine them being edited—which continue to exist in the current edition. Of course, she carried us over the finish line, and it’s definitely reflective of her intellectual work and value and concepts. And so, it’s just really cool to have been a part of it.

I’d also just love to hear about your own work in contributing to the seventh edition, and what your role was there, and how you worked with everybody on that.

SG: Susan has a team of people that work on the book. And so Elizabeth Love, who’s actually Susan’s sister, is one of our co-authors, and in many ways is almost a project manager helping to go through it and make sure that the references are updated. So, Elizabeth is a hero—mad props to her and all the work she put in on this text.

And then Dr. Lauren Green, the other medical advisor, and I went through chapter by chapter and highlighted areas that needed to be updated, highlighted areas where we thought we would have a newer anecdote, or a great analogy, or story that would really put it in current context for patients as they were reading. And then helped with the rewriting of chapters that were relevant to us ,like Lauren with breast MRI advances, and me with chemotherapy and some of the supportive care contexts.

And then Susan is the final round of red ink, making sure that everything flows well and reads well. Elizabeth is also fluent in Spanish, so she assists with the Spanish translation, as does one of the third medical advisors to the foundation. And then this year there’s going to be continued editions in other countries.

For example, the book is being translated for China again, which is the first in a few editions. I’d have to look to see which the last one was that went to China, but that’s really exciting. The Love CEO, Christopher Clinton Conway, is influential in helping work with the publisher and make sure that all of those editions stay true to Susan’s vision. That team of people is really behind the scenes helping to drive the project.

I know we’re talking so much about the book, but I wanted to briefly touch on Dr. Love, the person. If you could talk to speak to your own friendship and working relationship with Dr. Love, and how that grew over the years, and how you got to be involved within her foundation as a medical advisor.

SG: A few years ago, the Love Foundation had decided that they were interested in expanding and having a medical advisor to the foundation, and had posted a job description for that position and had advertised it.

And I think at the time that they had moved forward with advertising and posting for that position, Susan was starting to think about retiring and slowing down. And in particular, there were certain aspects of the job that as she got older, she just didn’t love anymore. They were looking for just a different set of voices. They were also interested in diversifying the faculty and the staff that supported the Love Foundation. The call to the job posting was forwarded to me by a colleague on Twitter actually saying, “This isn’t the right opportunity for me, but I thought of you,” and had forwarded it to five or six of us.

And I read it, and at the time, I was starting to think about next steps for my own career. As I read it, I think perhaps the most telling thing is that rather than deleting it outright, I read it, and then after I read it, rather than deleting it, I moved it to one of my email file folders and just slid it into that folder.

And then I just kept thinking about it. Probably six weeks passed and I did nothing, but I would constantly think like, “God, that was such a great job description,” and I just was really inspired by what they were looking for, and their vision for growth, and what the foundation really embodied and believed. And it aligned so closely with my beliefs that I finally ended up applying for the position—and did not tell my husband, and the position at the time pre-pandemic would’ve involved moving to LA.

And at the time I was still in Kansas City. I applied for the position thinking, there’s no way they’re going to hire me for this. I got selected for a pre-interview, and I had the pre-interview with the CEO, Christopher Clinton Conway, and it was just absolutely delightful. We had a wonderful conversation. And then I got selected for the final interview that was with the foundation board president, Susan, Christopher, and a few other people close to the organization.

And at that time, I felt like I probably needed to tell my husband that I was apparently interviewing for a job in LA—and I think his response was something like, “Do you know how much housing costs in LA?” And I was like, “Yeah, but I just can’t stop thinking about this.” So I had that interview and that was on Zoom, mostly because they were in LA ,and I was in Kansas City. That was pre-pandemic.

It was one of the first times that I had really used Zoom in that group interview format that now just seems like every single day of our lives. I know that the group had scripted questions that they wanted to ask me, but instead what happened was the first question Susan asked me got me so excited!

I think it was about patient communication and how I value that, and talking a little bit about some of the features that had stood out in my application.

Susan and I just very quickly had this kind of rapid fire back and forth—had all these ideas about ways to be more effective communicators, and better reach different patient communities, all the different patient communities that really needed to be reached out to, or included, that perhaps had historically suppressed voices, or didn’t have the same access to information, which led to talking about being disruptive in the clinical research industry, and how often what we do with research is kind of the same old thing over and over again—different versions of the same experiments or slight iterations of the same drug or the same target—and how there’s a huge opportunity to revolutionize cancer care by really going in whole new directions to look for opportunities to cure the disease.

No one else got to talk! I mean, Susan and I just had this absolutely lovely bringing together of minds. I can’t describe it any other way. And I just felt so excited by her and her energy, and connected to her. And then finally, they told us that we really had to end the phone call. And I was like, “But there’s so much more I want to talk to Dr. Susan Love about.”

It was just absolutely amazing. And after that, the pandemic hit, and then all of a sudden the foundation was sending me messages that said things like, “We love you, but we have no idea what’s happening in the world right now, and we just need a minute.” And so actually one of the first outings I had during the pandemic was when the CEO came to Kansas City to meet me in person and talk about what the opportunity might look like in this, at the time, pandemic world.

And they had essentially agreed to change the job position to this medical advisor position, that would allow me to not move to LA and start working for a nonprofit in the middle of a pandemic, but instead have a close connection and relationship with the foundation doing many of the things that Susan and I had gotten so excited about on that original call.

And so rather than taking a new job, I ended up with two jobs, and I went to my friends and colleagues at Sarah Cannon where I was at the time and said, “Hey, is it OK if I take this other job?” And they said, “Absolutely.” That ended up being a really great opportunity and how I got involved in the organization.

Now that I’ve moved to Brown, one of my first questions here was, “Can I keep being a partner with the foundation and being a medical advisor here?” And they were gracious enough to let me continue that other job that I have as well, and it’s been wonderful.

Well, just wrapping up here, Dr. Graff—I know sadly we lost Dr. Love earlier in 2023. Just to sort of end on that note of preserving her legacy, how are you going about doing that in regard to the breast cancer book, and with the foundation, and how do you see her legacy continuing?

SG: I think that’s a question that continues in evolution and is potentially happening in stages. So interestingly, for everything that Susan is and and forever will be, one thing that maybe, she didn’t want to be, is a name attached to a book and a foundation forever and ever and ever.

I do think that there’s a vision to reimagine what the next steps look like, and that’s definitely still ongoing. As of now, the new edition is launched, and myself and Lauren, the other medical advisor in the foundation, together have really taken on the helm of being the faces of the book and helping to promote it and share its light out in the world. So proud to do that with Hachette, our publisher, who also have been tremendous champions of the book, the whole journey of all the editions.

I don’t know what will happen when it’s time for the next edition, the eighth edition. I guess we’ll have to see when the time is right to pursue that, and what that re-imagined version of the book looks like. In terms of Susan herself, the Love Foundation is partnering with the Harvard Radcliffe Institute Schlesinger Library to receive Dr. Love’s papers.

So, one of the archivists is going to go through all of Susan’s earliest drafts of the book, and personal papers, and research grants and all of that, to include that in their library’s collection. You will be able to visit Dr. Love’s Intellectual Properties collection at the Harvard Radcliffe Institute Library. That library has a really powerful collection of works by other historical giants who are women.

I got to meet the archivist at the book signing we held in Boston, and I’m really excited about going to see the collection once it’s fully curated. I’m interested in introducing my daughter to the archivist. My daughter has a real passion for deep research, reading, and quiet spaces and talking to the archivist. I think that this is her future career. Her and I are planning a girls trip to go visit Dr. Love’s work once it’s there, along with some of the other collections in the library.

That’s just one example of the wave that I think Susan will continue to have an impact on the history of women in medicine, and on breast cancer, and on patient advocacy.

Other components of the foundation, like the Love Research Army, continue to power forward, looking for opportunities to connect people interested in clinical research with trials that are appropriate for them or their communities.