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Even in the doctor’s office, the words patients hear can cover up the realities of stage 4 breast cancer. “He thought he was offering hope but what he was doing was denying my reality and minimizing the deaths of so many people,” writes a woman with metastatic breast cancer.
I was sitting across from the general practitioner whose office has had success with acupuncture for chemotherapy-induced peripheral neuropathy when he said it:
“Your oncologist has been a part of the transformation of stage 4 breast cancer from terminal to chronic.”
I’ve heard this sentiment many times, usually without specific reference to my oncologist. I heard it at a scientific meeting just weeks before when a researcher called my type of metastatic breast cancer “benign.” I’ve heard it or read it being said by people who should know better too many times to count.
And every time, every single time, it jars me anew.
As though my living to 56 isn’t enough, with the implication that even if I had only made it to the median overall survival – sitting stubbornly at three years for most subtypes – that also would have been enough. As though getting years of hard and then harder treatment at any age – young, middle or old, we all matter equally – rather than dying within months somehow equates to a full and complete life.
I am here to tell you that it does not.
Use the word “chronic” at your own peril.
I pause to think about what my oncologist would say. I think she would disagree with the doctor sitting benignly before me. I remember her visible annoyance when a radiology report used words that indicated no more treatment was necessary and her hesitancy when I ask about dropping a medication. I’ve never even heard her say “no evidence of disease,” never mind “chronic.”
This doctor, my acupuncturist, who exudes kindness and listens carefully and who, my oncologist later tells me, called me an “excellent candidate” for acupuncture, didn’t say those words to hurt me. I know that people – scientists, doctors and patients – use such words because they find hope in saying them. They want to spread that hope to the people who need it most.
And yet a man I’d only briefly met once had died of breast cancer just the day before. My first friend in the strange, separate world of cancer, had died two months earlier. When he said those words, the long line of lost friends, women and men whose lives were each shortened in progressively more painful, more limiting, more destructive ways marched across my mind. Michael, who I barely knew but who I’d have named as deserving whatever advocacy award was seeking nominations; Katherine, my first and closest, funniest, smartest cancer friend; Sandra, Erica and Suzanne dying in quick succession, and so many more this year alone.
Every single one of them deserves our unrelenting honesty about what metastatic breast cancer is. It isn’t “benign” or “chronic” or “essentially curable.” Not yet. I looked at the doctor and said, “I understand what you’re saying and why you’re saying it. I’m one of the people who’ve been lucky. I’m still alive. But yesterday someone I know died of breast cancer and tomorrow someone else will. Over 44,000 people in the U.S. alone die of breast cancer every single year.”
Sometimes, if you’re like me, it can feel cruel to burst someone’s bubble. That’s what it felt like in that moment, speaking that truth. He thought he was offering hope but what he was doing was denying my reality and minimizing the deaths of so many people. He told me he felt shivers as I spoke. I hope that’s true, and I hope they return every time he thinks about blurring the sharp edges of what patients with cancer confront.
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