When I was diagnosed with breast cancer, people lied to me.
Oh, the lies came with the best intentions, sparked by genuine caring – and, of course, positive group-think.
Before I ever met my oncologist, I called a cancer hotline.
“I was just diagnosed with breast cancer, and I think I’m going to die,” I said. The person on the other end, a “survivor,” immediately reassured me “No, honey, you are not going to die. I had breast cancer, and I’m just fine.”
The woman meant well. She wanted to quell my panic.
She wanted me to live and for me to believe I was going to live.
But she did me a disservice by lying to me. I’m sure she didn’t think she was telling an untruth. I think she believed what she was telling me. Which makes it a lie fueled by ignorance. After all, she was no doctor and knew nothing about the nature of my cancer.
I was naïve at the time of the phone call, being new at this cancer stuff and all, so I clung to those words, “you are not going to die” as if they were scripture.
Now, looking back, I wonder if they were scripted.
And I have to wonder whether this organization conveyed a “think positively” vibe to every caller. Probably – fueled by the myth that breast cancer is curable.
How many other callers heard that they wouldn’t die, only to find themselves dying of metastatic breast cancer? How many people, “survivors” for the time being, have a false sense of security because of their interactions with those who tell them they aren’t going to die?
Just to make sure I covered all my bases, I called another hotline. The woman, another “survivor,” told me that I would live and to be positive.
Now, I am not against positive thinking in general. Having a positive attitude is a wonderful thing. But I loathe blatant lies that cause harm to patients – either through false hope or helping to create uplifting survivorship stories.
Our culture is saturated with lies about breast cancer.
Years later, after a hellish regimen of simultaneous chemotherapy and radiation treatments (which my oncologist had told me would just make me a “little tired”) and deforming lumpectomies, I was less naïve about the lies people tell.
The radiology department made a mistake. A clerk had forgotten to send my mammogram films to my surgeon before my follow-up appointment. So I called to complain and to make sure they were sent to him so he could have a look. I emphasized that I already had a history of cancer and why it was imperative he received the films:
“This is so important. I could have a recurrence, and he might never know – just because the films weren’t delivered,” I said, without thinking about the irony that a mammogram had missed my tumor in the first place.
The person on the other end of the phone said, “Aw. You won’t get a recurrence. You will be just fine.”
Was she on crack?
This time, I could read between the lies. And I blasted her: “You are in NO position to tell me this! You do not know whether I will have a recurrence,” I said. “Send those films!”
Years later, after a terrifying MRI scare and a bilateral mastectomy with DIEP flap reconstruction, I heard comments from well-meaning people about how lucky I was to have a free “tummy tuck” and “boob job.”
This is a lie. A) I wasn’t feeling lucky and B) This was not cosmetic surgery. As anyone who has had a mastectomy can attest, it is no walk in the park.
But I suppose it is more glamorous to drape the truth in a lie that I opted for the surgery to enhance my physique.
The thing is, from the very beginning, breast cancer patients are inundated with messages of positive thinking. We see all the smiling faces at walks and races. If one is lucky enough to have lived, it’s great to put on a smile and say she/he is a triumphant survivor.
Breast cancer is viewed by the public as this curable, sexy, fun sort of thing. Tell that to the 40,000 people or so who die each year from metastatic disease.
Breast cancer is the envy of people with other cancers. I wrote a post about it here. What gets lost is the real suffering of breast cancer patients.
Lost in a sea of positive-think lies.
Have people lied to you when you were diagnosed or treated for cancer? If so, how? I want to hear your stories.
Tags: lies about breast cancer, myths about breast cancer, positive thinking and breast cancer