There’s the grin, the glasses, the signature short curly hair ― and then there’s the book, universally touted as the bible for women with breast cancer.
Instantly recognizable, sometimes controversial, Dr. Susan Love may just be the most famous cancer advocate on the planet. She's the face and the force behind major advances in breast cancer research and treatment, including the use of lumpectomy over mastectomy and the tracking and documenting of the “collateral damage” of surgery, chemotherapy and radiation.
A surgeon, researcher, teacher, activist and author, Love is currently the chief visionary officer of the Dr. Susan Love Research Foundation, a clinical professor of surgery at the University of California, Los Angeles and a founder of the National Breast Cancer Coalition. In 2008, she partnered with the Avon Foundation for Women to launch the Army of Women, a cohort of over 375,000 women ready and willing to participate in research. More recently, she worked with Sage Bionetworks, a nonprofit research organization based at Fred Hutchinson Cancer Research Center and led by Dr. Stephen Friend, an affiliate investigator in the Public Health Sciences Division at Fred Hutch, to develop Share the Journey, an iPhone “crowdsourcing” app designed to help track the physical, mental and emotional after-effects of breast cancer treatment.
Love is also a cancer survivor. In June 2012, she was diagnosed with acute myelogenous leukemia and went through seven weeks of hospitalized chemotherapy followed by a bone marrow transplant (her “baby sister” was her donor). That experience has both informed her research (particularly with regard to treatment’s impact on patients) and further inspired her to not just treat breast cancer but find the cause and eradicate it completely.
In 1990, the surgeon-turned-survivor published the first edition of her groundbreaking book, “Dr. Susan Love’s Breast Book.” This month marks the publication of its sixth edition, a perfect occasion to talk to Love about what’s changed and what hasn’t in the realm of breast cancer research and treatment ― and what she hopes lies ahead.
It’s been 25 years since you published the first edition of your book. Can you talk about the changes that have happened during that time?
It’s really been an interesting journey writing every five years. [The book] clearly documents how we get one theory and think that explains everything, and we go hell-bent off in that direction only to find by the next edition that it’s maybe not so much.
First, it was surgery and [the concept that] more is better. The first edition was really written to say lumpectomy and radiation were just as good. Then we began to think more systemically. With the second edition, it was high-dose chemo and stem cell [treatment] to the rescue. And then it was no, maybe not. Then it was targeted therapy with HER2/neu – and another edition. Now we’re finding maybe the tumor is not all one kind. Maybe there are multiple kinds, [so now there’s] this idea that with precision medicine we can figure out exactly what kind and hit it. This edition is asking what about immunotherapy? Each time, we make advances. It’s not like [these treatments] are totally worthless. Each time, we move forward because it does help some people. It’s just not the total answer.
It shows you how medicine and research work. We tend to think it’s just a simple thing. You look for the answer, you find it and everything’s groovy. But it’s not. We sneak up on it. We look this way and get some benefits but not as much as we wanted. So then we go back to the drawing board and try to figure it out.
It’s been interesting writing every five years. It gives you perspective on how things are changing. I really hope that five years from how we’ll be able to say, this is the answer.
You used Facebook to “crowdsource” content for your book. How was that?
It was great on two fronts: content and support. When I’d wanted to know about joint pain ― everybody always talks about joint pain from AIs (aromatase inhibitors) but I realized I wasn’t as clear on which joints were giving pain ― I could put it out there and within a couple of hours, I’d have the answer. When I was in practice, it was easy: I saw and dealt with a lot of people. Facebook helps me be aware of what the issues are, and what, realistically, is bothering people. It was very helpful.
Also, when I got discouraged ― or my own chemo brain got to me ― I could go on Facebook and say, “I need you to cheer me on” or, “Don’t let me be on Facebook!” It was a very good experience.
You’re crowdsourcing research, as well. Tell me a little about the Army of Women and the Health of Women studies you’re doing.
The Army of Women was my reaction to the fact that researchers were doing their research on rats and mice that don’t get breast cancer. You have to give it to them to study them, and that seemed a little crazy to me. I asked “Why?” and they said, “We don’t know how to find women!” So I said, “I know how to find women!” and we launched the Army of Women.
We now have 375,000 women who are more than willing to participate in research, women with and without breast cancer. We review the studies ― we have a scientific advisory board ― then we e-blast them out to everybody. I’ve found it’s more successful [that way] because then everybody knows what research is going on. It gets viral, it goes farther – women forward it.
We had one study where we needed Vietnamese women and we thought, we don’t have that many in the Army. But it was completely filled in a day. It all depends on the study. If it’s a study of healthy women, we can easily fill it in a day with thousands. The more restrictive the criteria, then [the longer it takes to fill]. But we keep putting it out there until it’s filled.
It’s been very successful and there are some researchers taking advantage of it.
(According to the Army of Women website, the resource has been used for nearly 100 studies led by researchers from more than a dozen institutions, including Fred Hutch and Seattle Cancer Care Alliance, City of Hope, UCLA, University of Michigan, MD Anderson Cancer Center, Georgetown University, Ohio State University and New York University, among others.)
But it’s not as many as I had hoped. It’s underutilized and that’s the biggest complaint. It’s like, “Build it and convince them to come.”
The Health of Women study is our own study where we track women over time with a series of online questionnaires. One of the issues we’re pursuing actively is collateral damage of treatment.
You’ve been very outspoken about the damaging short- and long-term side effects of treatment. Is that a result of your experiences as a cancer patient?
One of the big insights for me having had cancer myself is how you look at things differently as a doctor than as a patient. As a doctor, you compare patients to the people who’ve died. You’re patting yourself on the back for having done such a good job because the patient is alive. When you’re a patient, you’re happy to be alive but you compare yourself to where you were before. You’ve very aware of the price you paid to be here.
I think we’ve done a poor job in the medical profession of dealing with the collateral damage of treatment. It reminds me of having a car crash. The car will still drive but the front door doesn’t open the way it did before. [But] the drug companies don’t want to know about the side effects and neither do the medical oncologists. It’s not because they’re bad or evil, it’s just not what they’re focused on. They’re focused on saving your life. That’s what they count as success.
I think we should do research on who gets what side effects. Do people with restless leg syndrome have more neuropathy? [If so], maybe they could do a different drug. If you have a lot of Alzheimer’s in your family, are you more likely to get chemo brain?
Those are the kinds of things we need to start studying. Now that we’re better at saving people’s lives and keeping them alive, we need to look more deeply at some of these things and do better.
You helped develop the new “Share the Journey” app to track the collateral damage of treatment in breast cancer patients and survivors. How is that going?
I’ve worked with Steve [Friend] for a long time on a lot of projects. It’s a good start. I think the health kit (ResearchKit) they made for the iPhone, which will enable a lot of different kinds of research, is really a good one. I was disappointed that Share the Journey wasn’t more robust, but I think that’s the way to go in the future in terms of capturing the actual person’s experience.
One of the big problems with patient-reported outcomes is often patients are filling out questionnaires made by doctors and researchers. And they don’t always ask the right questions. I think the advantage of doing things like crowdsourcing and maybe more descriptive or open-ended questionnaires is to actually get what the patients are reporting and what bothers them, which may or may not be the what the researcher or physician thinks is bothering them.
We need to have real patient-reported outcomes. It’s harder to do that kind of research ― everything isn’t uniform and easy to collect. It’s more open-ended. But that’s what we’re trying to work on, and Share the Journey is the first step.
Is crowdsourcing via smartphones, apps and wearables the new normal for research?
[These are] good ways to capture the patient experience. That Parkinson’s app (mPower) that came out at the same time as Share the Journey has this thing where you tap the phone and they can measure the degree of tremor by how fast you tap your fingers. They can electronically capture it.
I’m very excited about the contribution that that’s going to make. But I think we have to be careful to not get too caught up in what’s easily measurable … It’s the same with precision medicine. You’ve got the cancer cells and all their mutations in a context ― in that organ, in that body, with their diet, with their exercise, with their stress level. So it’s not so simple that you could get it down to a few points in a computer. We’re more complex than that.
From a scientific standpoint, it would be nice if we existed in a vacuum. It would be easier to measure and control. We have to be careful we don’t get too stuck on what’s available to measure as opposed to what makes sense. I think we sometimes get stuck in what we can measure and lose sight of the context. That’s my worry about all the precision stuff ― but also testing and tracking and devices.
It’s Breast Cancer Awareness Month. What should women keep in mind with regard to breast health and screening?
I go with the Task Force (click here for the U.S. Preventive Services Task Force recommendations). The problem with screening is it finds some cancers at the right time, but there are some that it misses entirely because they’re too aggressive. And there are some that it finds that are never going to do anything.
It’s like the Transportation Security Administration ― not everybody they pull over is a terrorist. We want it to be precise, but guess what? The TSA isn’t that precise. They pull over a lot of people and maybe capture a few and they miss some. That’s sort of what screening is like. When you look at it from a population basis, it doesn’t make sense to do it regularly until age 50.
We thought early detection was the answer. And it is for some people but not for everybody, and we need to get over it.
Do women need to take some responsibility for their own breast health, as well?
Absolutely. If you feel a lump ― if you feel something that doesn’t feel right to you, you have to get it checked out. If the doctor doesn’t listen to you, get a different doctor.
You know your body from the inside out. They just know it from the outside. You’re a better judge.
Solid tumors, such as those of the breast, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she also writes the breast cancer blog doublewhammied.com. Reach her at firstname.lastname@example.org.