What We Talk About When We Talk About a 'Cure'
Oncologists know that 30 percent of people diagnosed with early stage breast cancer will eventually develop metastatic disease, often years after their original diagnosis. Wonderful five-year survival statistics, in other words, are not the same thing as a cure. And while doctors are well aware they can’t tell which of the people who make it to that five-year anniversary will experience a recurrence, the good news is that 70 percent are, for all intents and purposes, cured.
But does a breast cancer survivor need to actually hear her doctor utter the word “cure” in order to feel healthy? Shakespeare famously observed that "a rose by any other name would smell as sweet,” and perhaps expanding the vocabulary we use to discuss cancer and its recurrence -- or its apparent absence -- will help survivors gain a better handle on their own recovery.
At the Miami Breast Cancer Conference in March 2016, well-known medical oncologist and professor at Duke Medical School Kimberly L. Blackwell discussed why she doesn’t typically use the word “cured” with her patients. As much as she would like to tell patients who hit the five- or 10-year mark without a recurrence that they are cured, she's reluctant to do so. To a colleague who asked her, “If they make it to 20 years, can you tell them, ‘You’re cured,’?” Dr. Blackwell responded, “I worry about late recurrences, and I worry about new primary breast cancer.”
Dr. Blackwell points out that the increasing number of early-stage breast cancer survivors has created a population of people who are at risk for a return of their cancer and for the possibility of a new cancer. For patients who are doing well following breast cancer treatment, she usually tells them, “It’s most likely that your cancer won’t come back -- but you still have to come see me.”
Word choice affects outlook
Why does a doctor’s word choice matter? Because words help to frame a person’s outlook. Sometimes the word “remission” is used for people whose cancer seems to be gone. The National Cancer Institute explains remission this way: “In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.” To me, remission implies that the cancer will come back and that the patient is enjoying a temporary respite. Maybe that’s why the word is used less often these days, when so many people survive for years and years.
Another term used is “cancer-free.” Some reporters seem to apply this term to anyone who has completed cancer treatment. I personally find this use irresponsible. Although no cancer has been seen since my surgery in June of 1998, my doctors continued with chemotherapy and radiation after my mastectomy and have followed up on every weird symptom I’ve had since then because they know that cancer cells could still be in my body. Maybe I am cancer-free, but maybe not. Rather than saying someone is cancer-free, doctors are more likely to say that they can find “no evidence of disease,” a phrase which is often abbreviated NED.
Cured. Remission. Cancer-free. NED. Each frames the attitude of a survivor in a slightly different way. My friends Lin and Brenda have doctors who will use the word cure. Lin says, “My oncologist considers me cured due to how I responded to treatment. I, however, do not. I feel I am in remission and dancing with NED.”
Brenda says, “My doctor said from the outset that he thought he could cure me. I was surprised, as I thought that oncologists never used that word. He said it several times throughout treatment. Of course, I came to realize that 'cure' just meant keep me cancer-free for five years. He didn't necessarily, technically, mean for the rest of my natural, pre-cancer life expectancy. That was one of the first things I learned when I became a resident of Cancer Land: language here is slippery. You think you know what your doctor is talking about, but you really don't.”
Can the word 'cured' be harmful?
We like good news, so what’s the harm in using “cured” or “cancer-free” to describe a survivor? Ginny Mason, who finished treatment for inflammatory breast cancer more than 20 years ago says, “I've been told by some of the top breast doctors that I should consider myself cured, but others have said that no cancer patient should ever focus on 'cure' because you let down your guard and can be lulled into thinking nothing can happen again.” She says it is important to find the “balance of going forward and living your life in spite of that potential cloud over your head. It gets easier with time, I think, but some folks have more difficulty doing that.”
I don’t know if the doctor told my work colleague Janet that she was cured. He did tell her he “got it all” after her breast cancer surgery, and for the next 10 years or so, she felt cured. In fact, she didn’t think about the possibility of a breast cancer recurrence when she was having trouble with a lingering cough. The cough eventually was diagnosed as a symptom of metastatic breast cancer from her original tumor.
I have had trouble finding the right verb tense to describe my own relationship to cancer. For years, I was reluctant to say that I had cancer when a colony of cancer cells too small to detect might be growing on my liver. Yet, this April 20, the anniversary of the day I learned I had cancer 18 years ago, I don’t want to say I have cancer. At some point, I began to believe that my doctors really did zap the very last cancer cell with surgery, chemo, and radiation. I still see my oncologist every year, and I am aware that I am at risk for a new primary breast cancer, but I no longer focus on the possibility of recurrence.
In the end, whatever words you use to describe your own relationship with cancer, work to find a balance of hope and vigilance. Alert your doctor to changes in your body, but enjoy feeling healthy and strive to be optimistic that you really are well.
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Blackwell, K. Late Recurrences in Patients with Breast Cancer. Lecture at Miami Breast Cancer Conference March 10, 2016. Accessed from http://www.onclive.com/conference-coverage/MBCC-2016/dr-blackwell-on-late-recurrences-in-patients-with-breast-cancer April 15, 2016.
Phyllis Johnson is an inflammatory breast cancer survivor who serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)(c) organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org_. She stays current on cancer information through attendance at conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. A retired teacher, she has been writing about cancer issues at HealthCentral since 2007. _