We had met after she was diagnosed with recurrence, only five months after the end of her “curative” treatment. At the time, we talked about her life—how she had been a nurse before marriage, a mother to three children. She explained that her husband had passed on but she was not alone. She was raising her grandchildren; even had full custody of them. “Who would’ve thought I would be a ‘mom’ again at my age?” she had told me. We had discussed the uncertainties for her future given her quick (“platinum-resistant”) recurrence, prognosis, and the options for treatment. She asked me not to give up on her and that she would try anything.
“I have to fight, for my kids,” she had said with tears falling. She intended to survive, no matter what the odds looked like.
We initiated a new treatment and her CA-125 and CT scan normalized. She went into and continues in remission—fourteen months later. We continue to talk about her children and I have met her family. Her oldest has begun college; her youngest has outgrown his bed. She sees a future—although without any certainty for how long remission will last. For me, she is the epitome of the survivor.
Her story came to mind as I recalled a conversation with a colleague about the definition of a “cancer survivor.” The National Coalition for Cancer survivorship defines a cancer survivor as “anyone touched by cancer.” Yet others, such as the President’s Cancer Panel, defines it more specifically as “anyone undergoing treatment or patients who have had cancer.” My colleague had suggested that the latter definition resonated with him, because as an oncologist, we were able to intervene directly with patients with cancer, and it was our goal to treat their cancer while improving (or at least maintaining) quality of life. For him, the task of caring for “everyone touched by cancer” was not only daunting, it was unrealistic. “We (as oncologists) simply cannot take care of cancer survivors if the term is used that broadly.”
I understood his position and agreed with him—the role of the oncologist is to care for his or her patients, not their social circle. However, I felt that what was lost in our discussion was the recognition of how much lives are changed when cancer touches them.
But it brought to mind Rose, a very old family friend. Her daughter, Lillie, and my partner had grown up together. We had our first daughters around the same time, and our children had formed a very close bond. Lillie also had breast cancer and during her second pregnancy, she was diagnosed with metastatic disease. We saw her struggle to maintain her life and the responsibility of motherhood while fighting her cancer. We also saw the toll it took on Rose—to support her daughter who was fighting for her life, all the while trying to meet the needs of her granddaughters as well.
Tragically, Lillie died a year after the birth of her second child. When questions arose about the children (Lillie’s partner had not wanted them), Rose stepped in to assume custody. Despite the grief of losing a daughter, she put her own needs aside to ensure her grandchildren were safe. We continue to support her as much as possible, but every day I see the worry in Rose’s eyes and the grief that has become a part of her.
Although the experiences of these two remarkable women reflect different experiences with cancer, in some ways, their struggles are similar. Both of their lives have changed due to cancer in more ways than I can enumerate.
As much as Sharon is a survivor, I honestly believe Rose is one as well. As we try to redefine cancer survivorship in order to positively impact quality of life of those living with cancer, these two women remind me that not all cancer survivors are cured, and not all cancer survivors have cancer. While it is not possible for oncologists to care for all of those who meet the definition of a cancer survivor, perhaps our largest contribution to their care is to acknowledge them and work to ensure they receive the support beyond what oncology itself can provide.
Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.