A funny thing happened on the way to putting this post together. The story changed.
Long before Denise Grady’s front-page article in The New York Times -- “Lymph Node Study Shakes Pillar of Breast Cancer Care” – arrived in my driveway Wednesday morning the findings had already been covered on the evening news the night before, in USA Today, and throughout social media platforms, from blogs to tweets and everything in between.
For survivors, the medical news business is just another peg to grasp in learning about cancer, treatment decisions, and choices. While perspective is everything, it is not always obvious when you’re new to cancer. By the time medical findings morph into headlines of this magnitude studies have been underway for years, sometimes decades, presented at conferences and then vetted through the peer review process for publication in the New England Journal of Medicine, the Journal of the American Medical Association, as this one was, or The Lancet, to name a few.
Study information itself can travel in a nanosecond but the process, from theory, to research, to finding, to poster presentation and paper, to academic conference, news conference, journal, then to literally changing the way doctors practice medicine? Medical evolution is not a headline today, change it-out-tomorrow field. If anything, as works like Atul Gawande’s Complications and Siddhartha Mukherjee’s The Emperor of all Maladies describe; it is quite the opposite.
When I was diagnosed in 1998 three different news stories concerning breast cancer received significant coverage before I even finished treatment. One of these truly changed the course of cancer therapy. The others obviously, did not.
The first was the early halt to a long-term study of tamoxifen that confirmed its effectiveness in preventing recurrence in hormone-sensitive, early breast cancer. I distinctly remember reading about this in my office when I was mulling over and trying to understand my diagnosis. Yet when I asked a friend – who was also a survivor and had worked as a social worker at Dana Farber – about this “new hormone therapy treatment,” she smiled and told me that doctors had been working with tamoxifen for years and that the study confirmed what had long been suspected. Bingo. Lesson learned.
Months later, following a round of FAC and too much surgery to detail, I was getting ready to start a round of Taxotere when the news about Herceptin’s approval by the FDA broke. Even though the drug did not pertain to the biology of my particular tumor, the excitement about its significance and advent of biologic therapy was incredible. It still is. I can’t say how much so without becoming overwhelmed emotionally by calling up all the faces of friends dear to me who may very well be on my radar because of Herceptin. That’s my context.
Which brings me back to the magnitude of a front-page story, even in the digital age, in The New York Times.
The study, reported in the most recent Journal of the American Medical Association, showed that full lymph node dissections are no longer called for in women with early-stage breast cancer who are (emphasis mine) treated with lumpectomy and radiation even if traces of micrometastatic disease are later identified by immunohistochemical staining in one or two lymph nodes. Estimates of the number of women who stand to benefit range from 20,000 to 30,000 depending on who is estimating and how.
The study did not include women who underwent mastectomy or women diagnosed with DCIS , or noninvasive cancer. This is worth mentioning since the treatment for DCIS, which has increased dramatically with the advent of mammography, varies enormously around the country based on physician practice and patient preference.
Interestingly enough, Dr. Otis Brawley, Chief Medical Officer of the American Cancer Society, told me that in approximately 65% of the cases where additional nodes were removed and studied following a positive sentinel node biopsy, no additional cancer is ever found. He emphasized that the primary reason lymph node removal is performed in the first place is to stage the cancer and determine the necessity, and extent of follow-up treatment, a fact that seems to have been lost In much of the discussion about the study.
Dr. Brawley, like other physicians I spoke with, emphasized that the findings were important. But he also went a step further. “This isn’t on the magnitude of Bernie Fisher’s study that found lumpectomy and radiation as effective for mastectomy in early-stage breast cancer. That’s a study that changed medical practice. I think the reason this grabbed the attention it has stems from the Denise Grady story and the fact that it’s good science.”
For the newly diagnosed women with the insurance and where-with-all to locate a breast surgical oncologist, being spared a full lymph node dissection is good news, even if, like the tamoxifen study I mentioned earlier, it isn’t news, per se. The nation’s largest cancer institutions have been changing lymph node surgical practice – MD Anderson and Vanderbilt University Medical Center were two that I confirmed – since the study findings were announced last spring at the most recent ASCO Annual Meeting. If not before.
It’s possible that women are already benefitting from wise decisions as data was being gathered. It’s also known that women who didn’t need any lymph node removal at all are still having them removed. Until we can bring together the most pertinent information to the newly diagnosed woman as she is making important treatment decisions this will continue to happen.
In The Emperor of All Maladies – A Biography of Cancer, Siddhartha Mukherjee repeated Dr. Fisher's infamous line. “‘In God we trust,’ he brusquely told a journalist. ‘All others [must] have data.’”
This week more data arrived. We “learned” that the full axillary node dissection may indeed be the last bit of surgical scaffolding supporting the radical Halsted mastectomy to fall away. Let it fall. While those structures were ebbing away new ones, based on different theoretical models and technologies, are being built from the ground up in an entirely different location.
The old structure was built on a model that assumed that cancer – by essence, uncontrolled cellular growth– followed a logical stepwise progression through the lymphatic system. Newer treatments so right into the cell and the heart of the matter, as I learned in 1998 when Herceptin came on the scene.
Oh. The third ‘news story’ in 1998? This one involved Paul McCartney’s wife, Linda, who was dying of breast cancer the week I was diagnosed. An unimportant and completely illogical fact about this wedged into my brain and lingered like a bad dream. Her cancer had metastasized to her liver and with that, led to the fatigue common in end-stage illness. For a number of weeks, until it dawned on me otherwise, any time I was tired there was an immediate association to Linda McCartney. I learned.
It’s essential that all of us – as cancer survivors – keep asking the hard questions of ourselves and healthcare partners. The problem is discovering what to ask.
Jody Schoger is a free-lance writer, breast cancer survivor and advocate who writes about issues affecting women with cancer at http://womenwcancer.blogspot.com