When news about a practice-changing breast cancer study hit earlier this month following its publication in the Journal of the American Medical Association, newly diagnosed breast cancer patients at Penn Medicine's Abramson Cancer Center had questions. Many of the patients who called or brought up the study during their appointments in the days afterward had seen news stories about the study and were confused. Did these findings apply to them? Did they still need the surgery they had planned?
In fact, the study pertains to only a small, specific portion of breast cancer patients. That group includes women who have breast cancer that has spread to one or two of the so-called "sentinel nodes" under their armpit, but whose primary tumors are less than 2 inches (5 centimeters) in size and whose lymph nodes could not be felt during examination by their doctor. The findings show that, although these women must still have a lumpectomy to remove the tumor in their breast, they may be able to avoid having additional surgery to remove extra lymph nodes beyond those taken during their sentinel node biopsy to learn if the cancer had spread. (After surgery, however, patients typically still require chemotherapy or hormone therapy, as well as radiation, to wipe out any traces of cancer in their nodes and halt new tumor growth. Tchou notes that pathology information obtained from the lymph node biopsy can help oncologists to recommend and select the proper chemotherapy.)
Since the lymph node dissection surgery requires placement of an unwieldy drain during recovery, may cause infections, and is associated with risk of developing the painful limb-swelling condition called lymphedema -- more than 40 percent of patients who have nodes removed later get it -- the results are, indeed, good news for the patients who may fall into the group of patients studied. In a statement released by the American Society of Clinical Oncology, Dr. Lynn Schuchter, chief of the division of Hematology-Oncology at Penn, noted that the findings are "in line with a recent trend of studies showing that less surgery may often be appropriate for many patients with cancer.” Indeed, for breast cancer patients, the march toward more effective, less-invasive surgical techniques has been in progress for more than a century. (For a fascinating look at the start of it all, in the late 1800s -- a mashup of brilliant surgical innovation and early attempts to study how cancer could be halted, with a side dish of drug-addicted doctoring -- check out the widely praised "The Emperor of All Maladies: A Biography of Cancer," by Siddhartha Mukherjee.)
Though most print media stories covering the study hit at least a few of those inclusion criteria in their explanation of the results, a perusal of only the headlines on some of those articles, as well as many television stories about it, told another tale. Instead of the often-repeated criticism that health stories often have a tendency toward "disease-mongering," the takeaway from some of these pieces was the opposite, insinuating that surgery, period, was no longer necessary for breast cancer patients.
On the other end of the spectrum, the New York Times' Denise Grady followed up her initial story about the findings with an in-depth Q&A featuring reader-submitted questions, which included the most exhaustive, nuanced discussion I saw about precisely which patients match the criteria used in the study. I wrote to Grady to ask what prompted her to put together the Q&A, and if there was anything particularly challenging about reporting on this particular study. Here's what she told me:
"We did the Q/A because when the original story was posted we began getting a lot of comments from readers, and some questions. We hoped the Q/A would help. In both the Q/A and the original story we tried hard to make sure we defined exactly whom the findings applied to. For me as a reporter, the difficult part was trying to put the finding in context, explain that it was part of a general trend towards minimizing surgery, particularly radical surgery, for women with breast cancer. And part of that explanation had to include the fact that the disease has the potential to metastasize early, and that's why chemo is often recommended even if only 1 node is positive."
Her thoughts cement my belief that reporters who cover health care and doctors who care for patients share a common goal -- and often a common struggle -- to communicate with patients about the most effective, least risky treatments for their personal situation. The trend toward personalized therapies, especially in the cancer care realm, means there are fewer and fewer occasions when a new diagnosis carries with it a one-size-fits all treatment strategy.
So what was it about this particular study that prompted so many patients to ask such similar questions? To me, it seems partly due to the fact that this is research that impacts patients at the very outset of their cancer experience -- when they're still dealing with the news that they have cancer at all, and just starting to make a treatment plan. I talk with lots of very savvy patients who aren't afraid to ask questions and push their doctors until they're satisfied with the answers they're getting, but they often detail feeling a real sense of vulnerability in the first days and weeks after their diagnosis.
This news seemed to hit women who were right in the thick of that experience. I spoke with one patient (she appears in the CBS3 story referenced above) who was diagnosed only a few weeks before the study came out. She said she felt like she was muddling her way through the Kubler-Ross grief cycle, and that this study came out precisely when she was at the bargaining phase. Even if you've never had cancer or any serious illness, it's easy to imagine what that must be like -- as in, "OK, I'm starting to get that I have cancer, but maybe this means I can escape part of the surgery I thought I had to have for it." (That patient learned as she delved into the specifics of the study that she didn't actually meet the criteria for the less invasive surgery since, although her tumor was less than 5 centimeters, her lymph nodes were palpable to her doctor.)
There's new health research being published every day -- some of it tiny, incremental steps toward a cure taking place in a lab, others giant diagnostic or treatment breakthroughs that impact the lives of thousands of patients each year. When does the news hit home for you?