Molly MacDonald, the founder and CEO of The Pink Fund, writes about how patients with breast cancer can approach decisions about choosing among disparate treatment protocols.
This month, I attended the San Antonio Breast Cancer Symposium where 7500 physicians, researchers, affiliated health care providers, and patient advocates from all over the world convened to learn about the latest clinical and basic research, as well as treatment protocols for breast cancer. There was a lot of talk about over and under treatment.
As a breast cancer survivor and advocate, let me begin by stating that the terms over and under do not give me peace of mind or confidence when thinking about treatment options, particularly if I am presented with 2 distinctly different courses of treatment. If each treatment is proposed to dramatically reduce my risk of recurrence and lead to long-term progression-free survival, I certainly do not want to be under or over treated. I prefer terms such as conservative or aggressive.
Of course, whether we call it under or over, or conservative or aggressive, I want the treatment that is “just right” for me.
This entire dilemma is reminiscent of the 19th century fairy tale Goldilocks and the Three Bears. The Cliff Notes version of this story is about a young girl, Goldilocks, who becomes lost in a forest and finds herself hungry and tired. She enters an empty cottage to find a place to rest. As she surveys the interior, she sees 3 empty chairs. Trying the first chair, Goldilocks finds it too hard; moving to the second chair, it is too soft; the third chair is just right. She sits for a while and observes 3 bowls of porridge at the dining table. Hungry, she decides to eat the porridge but finds the porridge in the first bowl too hot. The second bowl is too cold but the third bowl is just right. Sleepy after eating the porridge, she decides to take a nap. As before, the first bed is too hard, the second is too soft; the third is just right.
As I swam lengths in the hotel pool the last morning of the conference, where some of my best thinking is done, I mulled over 2 presentations around under and over treatment given the previous day. Both were from highly educated, highly esteemed breast cancer doctors from research-based institutions.
The first presentation of interest to me was "Should All Women With Breast Cancer and Positive Lymph Nodes Receive Chemotherapy?" The session was moderated by Cliff A. Hudis, MD, chief executive officer of the American Society of Clinical Oncology. Daniel F. Hayes MD, FACP, FASCO, clinical director of the Breast Oncology Program at the University of Michigan Comprehensive Cancer Center, and Harold J. Burstein, MD, PhD, Dana-Farber Cancer Institute, Harvard Medical School, were each presented with an identical case study upon which to make treatment recommendations. Hayes concluded that chemotherapy should not be given, while Burstein argued it should.
Later, we heard from Reshma Jagsi, MD, DPhil of The University of Michigan Rogel Cancer Center, and Rachel A. Freedman, MD, MPH of Dana-Farber Cancer Institute on the subject of "Over and Under Treatment, Getting It Right for Each Patient."
Jagsi’s overall concern with respect to overtreatment is to first, do no harm, while Freedman expressed concerns about the perils of undertreatment.
Somehow, this all felt like a game of chance.
I don’t want chance to play into the equation of how my doctor and I make treatment decisions, particularly those where my life might be at risk. Neither I nor my doctor should make a single decision around “a possibility driven by unpredictability without discernible human intention or observable cause”—Merriam-Webster’s definition of “chance”. Of course, there is an exception for clinical trials, where both patient and doctor acknowledge the possibility of risk.
After all, isn’t that what research is for—to help patients make sound, safe, and science-driven decisions about treatment choices?
And then there is the question of biology vs. anatomy. “In the past, anatomy, tumor size, and nodal extend were key factors in predicting outcomes,” said Jagsi to me in a conversation we had over email. “In recent years, we have become more sophisticated and appreciate that breast cancer is a complex disease with different biologic subtypes, like triple negative, HER2+, and hormone receptor positive/luminal cancers. The evolving understanding is that we can’t just look at the size and nodal burden and predict behavior or design treatment—we need to understand the biology to target the drivers of the cancer and help ensure that treatment is just right for each woman—being more aggressive with more aggressive disease and less so with disease that is more indolent.”
This leaves us as patients with so many variables to consider. Each woman diagnosed with breast cancer brings different circumstances to the table, even when the diagnoses are identical.
So I asked Jagsi to elaborate.
“One situation comes to mind after hearing the presentations on partial breast irradiation. What we heard at the meeting were invaluable results from large, well-designed randomized trials that compared treatment to part of the breast, administered twice a day for a week, to treatment to the whole breast, which is now most commonly administered in 3-4 weeks. What we heard was that there was very little difference in cancer control, but there was some very slight decrease in cancer control with the partial breast treatment in one of the studies, and in one of the studies, there was an adverse impact on the cosmetic outcomes with the partial breast treatment,” she wrote.
“One woman might reasonably decide to pursue whole breast treatment, as 15 daily treatments aren’t particularly burdensome to her; she wishes to squeeze out every last percentage of cancer control from her treatment, and she cares a lot about her cosmetic outcome. Another woman might reasonably choose the partial breast approach, particularly if we imagine her to live far away from a radiation treatment center, such that being able to stay somewhere for a week and get all her treatment done would best fit with her personal circumstances, needs, values, and preferences.”
And I recalled what my surgeon said to me in 2005 when I was presented with 2 radically different forms of treatment and I asked her, “Well, if it was you, what would you do?” Her response? “The problem is, it is not me. I am telling you both forms of treatment have identical outcomes in terms of what we know from the data. YOU have to live with this decision. I don’t.”
In the end, it is important for each of us, when faced with disparate treatment protocols, to seek out evidence-based science, including large treatment trials like TAILORx; get a second opinion; and evaluate our personal circumstances.
Then we can make the best choice, knowing which treatment feels “just right” for us.