Susan Love, MD, MBA
The “collateral damage” of cancer treatment is a topic that is familiar to Susan Love, MD, MBA. As a breast cancer surgeon and chief visionary officer of Dr. Susan Love Research Foundation, she has learned much about the consequences of cancer treatment. But she came by an important aspect of her knowledge more personally. “The thing that really pushed me into looking at the collateral damage of cancer treatment was my own experience,” she told attendees at the 2016 American Society of Breast Surgeons Annual Meeting.
“I was diagnosed with acute myeloid leukemia 3½ years ago. That’s when I learned that the difference between a surgeon and a patient is a diagnosis. When you are the doctor, you have one view of things. You have a completely different view when you are on the other side of the IV pole.”
The difference between a surgeon and a patient is a diagnosis. When you are the doctor, you have one view of things. You have a completely different view when you are on the other side of the IV pole.— Susan Love, MD, MBA
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After a bone marrow transplant from her younger sister, Dr. Love is doing fine, but the experience gave her perspective. “The big lesson I learned is that there’s a difference between doctors and patients in how they look at things, and it’s much better to be the doctor,” she said.
“When you are the physician, you are comparing your patient to the others who died and patting yourself on the back because this patient has done so well,” she said. “When you are the patient, you are comparing yourself to how you were before and you are acutely aware of the price you paid to be here. Your frame of reference is completely different.”
Dr. Love, the patient, found her physicians were not very interested in her “collateral damage,” which is primarily chemo brain and neuropathy. Her physicians implied that they would rather not know about conditions they don’t know how to treat.
What Is Collateral Damage?
In her presentation to colleagues,1 Dr. Love emphasized that side effects are not what is meant by collateral damage, which is a permanent aftereffect that may never get better. Collateral damage is far more serious, she maintained, than side effects. “It’s like you were in a car crash. You can get the car fixed, but the passenger door never closes the same way again. With cancer, you can survive, but you are never the same.”
“It doesn’t mean that patients would not make the same choice again, but they need to know about the potential consequences—not in general terms but how they will affect the quality of their lives. They don’t need their doctors to be euphemistic and pretend these effects are less than they are,” Dr. Love emphasized.
The health-care system is partly to blame, she added. It is structured so that patients see multiple specialists whose efforts are not necessarily well integrated and hear information when they are least likely to absorb it. “You are scared to death, and you will say ‘yes’ to anything,” she said, drawing from her own experience.
Frustration With Survivorship Research
Dr. Love is also frustrated with survivorship research as it is currently conducted. Rather than ask patients what they are actually experiencing, researchers pose their own questions. The process lacks long-term follow-up and does not compare patients’ experiences with those of their healthy peers. “This research does not seem to represent most patients’ experience of collateral damage,” she shared.
Inspired by her own “harrowing” experience as a cancer patient, Dr. Love set out “to democratize the process,” she said, by asking patients what the issues are “rather than defining the issues for them.” She started with crowdsourcing among the thousands of patients who visit the Foundation’s website. Thus, the Collateral Damage Project was born.
Collateral Damage Project
In August 2013, Dr. Susan Love Research Foundation e-mailed the many thousand constituents who comprise the Foundation’s “Army of Women” to request open-ended questions (in Jeopardy style) about side effects they experienced from breast cancer treatment. The result was more than 1,100 responses within 24 hours. “We had obviously touched a nerve, and this was worth pursuing,” Dr. Love commented.
The high interest among participants propelled the research team toward a larger project, which partnered with 24 or so other breast cancer support organizations, who surveyed their own membership. From this, the Collateral Damage Project received more than 9,000 “questions” from 3,200 individuals with a history of breast cancer.
The findings indicated breast cancer survivors are struggling with the following issues: fatigue (19%), memory problems/chemo brain (18%), numbness (13%), anxiety/depression (14%), sexual problems (14%), lymphedema (8%), joint/bone and other pain (5%), hair loss (2%), and others (2%). These results were not unexpected, yet many respondents did not remember being warned of these potential conditions, she said. “A lot of times we do explain side effects and consequences of treatment, but we do it at a time when women can’t hear it, and afterward, they are surprised,” Dr. Love added.
Communication Often an Issue
To better quantify collateral damage, Dr. Love and her team moved into phase II of the study and developed a quality-of-life questionnaire as part of the Foundation’s ongoing Health of Women (HOW) Study. The questionnaire is a collection of validated questions measuring health symptoms, administered to women with and without a history of breast cancer.
The overall effort of HOW has so far produced 10 data sets collated from the experiences of 42,694 women—12,171 of whom have had breast cancer. Quality-of-life data are available for 11,943 participants.
“Many of the issues they brought up were related to communication,” she indicated. For instance, “‘People [oncology providers] met with me and told me things, but I didn’t really understand it and was too scared to ask questions.’”
Complaints among almost 1,000 women who had breast surgery (lumpectomy, mastectomy, bilateral mastectomy) included the following effects, varying in frequency depending on the procedure: swelling or fluid retention (13%–16%), localized physical weakness (8%–12%), backache (19%–24%), lymphedema (13%–17%), change in sexual interest (35%–48%), mood swings (17%–21%), depression (35%–41%), and anxiety (30%–44%).
“Many of the problems are well distributed, regardless of the operation,” she observed. “It was interesting to me, however, that women often say they want a bilateral mastectomy because they think it will reduce their anxiety, yet those were the women in this survey who expressed the most anxiety. Depression was also higher in the bilateral mastectomy group, as was change in sexual interest.”
Financial and job concerns were also important for many women. For instance, 32% reported having trouble meeting their medical expenses. These issues are seldom discussed, she noted.
The Next Step
The next step will be to clean and analyze the data and focus on metastatic disease. Dr. Love is also interested in harnessing precision medicine approaches to identify patients who may be more susceptible to certain damage, such as neuropathy.
“Our focus used to be on keeping our patients alive, but patients are now living a lot longer, and collateral damage is more important to consider,” Dr. Love commented. “The ‘cure’ isn’t enough. We have to pay attention to how their lives are after we find the cure, and the study of collateral damage is an important part of that.” ■
Disclosure: Dr. Love reported no potential conflicts of interest.
1. Love S: Collateral damage of breast cancer treatment. 2016 American Society of Breast Surgeons Annual Meeting. General Session. Presented April 15, 2016.