Let’s celebrate survival, not apologize for uncertainty

In April 2019, my mother, Terry Lundeberg, was unexpectedly diagnosed with Stage IV cervical cancer. She was an otherwise healthy woman and the last person you’d expect to have cancer, though she has been surrounded by it her whole life.

My mom’s mother passed from breast cancer at 44. My mom also lost her best friend to ovarian cancer in 2008, only to find out her other best friend had breast cancer. Her sister-in-law survived ovarian cancer and her mother-in-law survived breast cancer twice. Our family has become experts in the art of caregiving, and it was second nature when it came to helping my mom.

My mother is actively surviving with Stage IV cervical cancer, which is wonderful. However, she will never be “cured.” Our society places a tremendous value on reaching a finish line—remission, a cure, an end to the disease.

Of course, remission would be the ideal outcome for every cancer patient, but for many it’s not a possibility. And patients who will never achieve this cure, and their loved ones, are often subjected to well-intentioned yet hurtful questions and comments.

Below are actual comments I have received in reference to my mother and what would have been more helpful to hear:

Instead of asking: “Why can’t she just have surgery?”
Try saying: “I’m sure she’s getting the best care and she will persevere.”

Instead of saying: “I’m sorry your mom has to start radiation on top of chemo.”
Try asking: “How do you feel about this step in her treatment?”

Instead of saying: “I didn’t know your mom will never be cured. How long does she have?”
Try saying: “I’m sorry she won’t be cancer-free, but I’m glad she has such a strong support system with you in it.”

The American Cancer Society (ACS) recognizes all cancer patients as survivors: if they were diagnosed yesterday, or if they’ve been in remission for 30 years. The ACS recognizes the struggle of being a cancer patient as a daily challenge that necessitates celebration.

Given the ambitious determination of medical care to help patients, society expects every cancer patient to “ring the bell.” For those unfamiliar, this ceremonial event marks the end of active treatment as a patient begins their cancer-free life.

Yet, not every patient will get to ring this bell, because they will either continue life-long maintenance therapy, or will finish treatment and never achieve remission. Maintenance therapy is treatment that is continued to control the disease that will never cease.

‘There is no single cure’

Society views this as an unacceptable outcome. These patients and their loved ones are immediately met with questions that suggest that one treatment should cure all. No, the government is not hiding “The Cure” so pharmaceutical companies can continue to profit. There is no single cure for all cancer. This is literally impossible.

Every disease is different, and even the same disease can present differently in different patients. As a result, not every patient will endure chemotherapy and radiation therapy. Not every patient is a candidate for surgery.

The somberness surrounding the C-word might be a projection of personal experience or stem from inexperience with cancer, and that’s fine. However, it is important to realize that these patients and their loved ones may or may not be experiencing what you’re assuming.

Every patient’s cancer journey is unique—and our approach to each patient should be unique, too. Let us consider cancer that is refractory to treatment a chronic disease, as is lupus, fibromyalgia, and many others. These are diseases that patients will never be cured of, but they manage.

As medical students and doctors, we should always gauge the patient’s perspective and never impose our own. Let’s use discussions of diagnosis and treatment as opportunities to celebrate survival because at this point, every day is a gift.