What's in a name? I question the reasoning of anyone who condemns sticks and stones that break my bones yet believes names can never harm me.
What you call me—and what I call myself—matters. That's why I feel lucky to have been diagnosed with lymphoma in 1990. Not lucky to face cancer, but grateful the timing kept me from feeling like a victim.
Days after my diagnosis, a newsletter from the National Coalition for Cancer Survivorship (NCCS) made its way to my nightstand. How they got my home address, I'll never know. And I don't care. All that matters is I learned “From the moment of discovery and for the balance of life, an individual diagnosed with cancer is a survivor.”
I remember turning to page two. Head shots of “Newsmakers” invited me to read about ordinary-looking people with identifiers such as “two-year breast cancer survivor” or “seven-year leukemia survivor.” My stomach dropped, as the softening cushion of shock deflated like a popped balloon.
“I'm one of them.”
Queasiness was replaced by a flicker of hope as I scanned their brief stories. Those folks called “survivors” looked and sounded proud and happy after cancer. Because of cancer.
“I'm a survivor,” I whispered to nobody.
The syllables felt strange on my tongue like the first time I said, “I'm a doctor.” Yet I embraced the term, hoping it could guide me.
Despite having cared for many patients with cancer, I'd never before heard the phrase “cancer survivor.” That's no surprise, since the NCCS had been around only four years, fighting an uphill battle to change the parlance from “victim” to “survivor.”
Pockets of patients around the country were still objecting, demanding they be called “thrivers” and “patients active,” to name just two. This word-wrangling seemed like silliness; I had bigger battles to fight.
But as I rode the ups-and-downs of my treatment and then recovery, it bothered me that “survivor” said nothing about my role in my care or my quality of life. I was a survivor whether I was receiving optimal therapy from highly qualified physicians or swigging snake oil bought online from charlatans. I was a survivor whether I was reveling with gratitude for each and every day or paralyzed by uncontrolled pain or fear of recurrence.
The irrepressible internist in me nudged the writer in me to find a medically appropriate adjective to clarify what kind of survivor I was trying to be. One word popped out: “healthy.”
“Healthy Survivor.” The new phrase felt comfortable. Familiar. People talked about healthy parenting and healthy financial investing. Why couldn't I talk about Healthy Survivorship?
For me, it was critical that my new label combine the strength of science-based therapies and respect for my unique needs and desires. So I coined a two-pronged definition: “A survivor who gets good care and lives as fully as possible is a Healthy Survivor.”
As I've shared my notion of a Healthy Survivor in keynotes and writings, the label has resonated with others. With cancer-free survivors and survivors whose treatment options are running out. With survivors running marathons and survivors who can no longer climb a single flight of stairs. For all our differences—faith, lifestyle, job, aspirations—we've shared a sense of hope about both our diseases and our lives, because just surviving isn't enough.
My health care team has played an essential role in helping me become a Healthy Survivor. I've needed them for my medical care, of course. But, at times, I've also needed the guidance of a social worker and the support of a group to help me understand and deal with the psychosocial fallout of surviving. Without all of them, I couldn't have lived as fully as possible, especially in the early years.
Don't for a moment think I have rejected “survivor.” When I'm in social settings or serving as a patient advocate at conferences, I usually refer to myself simply as a “survivor.” That's the accepted term nowadays in the lay and professional literatures. If I qualify my label at all, I say I'm a physician-survivor to emphasize my dual perspective as doctor and patient.
But when my life has hit rough patches because of my lymphoma, I've needed more. In the name of Healthy Survivorship, I've learned things I didn't want to know and have done things I'd rather have avoided. Thinking of myself as a Healthy Survivor has helped me embrace today—whatever the circumstances—and hope for a better tomorrow.
Over the years, I've seen the sparkle in the eyes of grown men and women who have proudly said, “My doctor calls me his star patient.” I've also heard the relief and hopefulness of people who've told me, “I'm a Healthy Survivor.” Such is the power of names.
Thanks to the NCCS, nobody diagnosed with cancer today ever has to feel like a victim. And with “survivor” as a starting point, it is but a short hop to Healthy Survivor. For patients who seem confused about whether they should call themselves “patients” or “survivors,” or who might need a little lift (or push), consider sharing the notion of a Healthy Survivor. The new label may be all they need to regain some sense of control over their circumstances and find the peace that they are doing their best.
Whatever you call your patients, you help them heal by using words that remind them of your mission to help them get good care and live as fully as possible.
Trastuzumab Approved as Single-Agent Treatment of HER2-positive Node-Negative/ Positive Breast Cancer
The FDA has approved the use of trastuzumab (Herceptin) as a single agent for the treatment of HER-2-positive node-negative (ER/PR negative or with one high-risk feature) or node-positive breast cancer, following multi-modality anthracycline-based therapy.
The approval was based on one-year data from the HERA (HERceptin Adjuvant) study, which found that breast cancer recurrence was reduced by 46% in women with HER2-positive lymph node-positive and lymph-node negative breast cancer taking trastuzumab for 52 weeks, compared with patients receiving standard adjuvant therapy alone.
Disease-free survival, the primary endpoint of the study, was found comparable to patients receiving standard adjuvant therapy alone.
Congestive heart failure occurred in 2% of the women treated with trastuzumab, compared with 0.3% in women receiving standard adjuvant therapy alone, and Grade 3 and 4 adverse events for the drug occurred at a rate of less than 1% for all events.
There are now four large randomized studies involving more than 13,000 patients demonstrating that the addition of Herceptin to standard adjuvant therapy significantly increases survival.