Why you won’t catch me wearing pink during Breast Cancer Awareness Month

My heart aches for women too scared, or without the strength or education, to question the medical establishment’s ostensible one-size fits all protocols

(Reuters)

Instead of the breast cancer myths we talk about, it’s time to focus on the ones we don’t.

Like the notion that pink – playful, healthy, and lighthearted – has anything to do with breast cancer. Or that casualties should be called survivors instead of victims. Or that the medical profession envelops us in a warm, fuzzy cocoon.

In October 2020, after my yearly mammogram, I went back for another one. With dense breasts, second mammograms had become routine. The next call, scheduling me for a biopsy, frightened me to my core. He’d numb the area first, the technician said. I’d barely feel the needle. He had performed loads of procedures. I probably had nothing to worry about.

A college friend had been given the same assurances. We swore pushing out our babies hadn’t hurt half as much.

“Probably nothing” turned out to be invasive lobular carcinoma. The Stage 1 designation brought little comfort. Other than my age, I had no pre-existing risk factors. “Bad luck,” my doctor explained.

A staff member at another doctor’s office who’d received a copy of the report initially delivered the devastating news. Over the phone! While I was home alone! I never learned the reason for the flub.

I’ll never ring that bell, was my first thought after I stopped crying. The ceremonial bell rung by cancer patients at the conclusion of treatment supposedly signifies their joy. According to a recent oncology study, however, half of all patients decline to pull the cord. The study found that instead of positive associations, the bell created false hope and worsened patient distress.

And still, bells and pink ribbons persist.

Scheduling my lumpectomy during my daughter’s school break when I’d have help was my next challenge. But no one had access to the scheduler’s computer, and she was on vacation.

After surgery, the following month, I woke up screaming, confused about who I was, where I was, and why a strange woman was trying to put a bra on me while scolding me for not cooperating. Thankfully, my scrambled brain eventually adjusted itself.

I asked my surgeon about it during my follow-up appointment. She’d heard me screaming, she said, laughing and brushing it off, without explanation. It was nothing, according to the anesthesiologist, who required considerable effort to track down. The phone numbers provided by the hospital and doctor’s office were no longer in service. After mentioning I was a lawyer to hospital personnel, the anesthesiologist called right away.

From what I read on the internet, my experience sounded like postoperative delirium.

The hospital bras with their copious Velcro that itched and chafed my tender skin. The recommended alternative sports bras no lymphedema-suffering woman could ever navigate alone. The CT scan technician who chastised me for bumping my elbow on the machine when she’d improperly positioned me to begin with. These are the small, routine indignities.

You’ll be fine, the doctor said whenever I mentioned the persistent pain and immobility under my right arm from a lymph node (thankfully, benign) that had been removed during surgery. It’s manageable, but not curable, my physical therapist admitted. That was fresh news to me. Flying now requires wearing a tight compression sleeve to minimize swelling from cabin pressure. Primary function has returned; pre-operative strength hasn’t.

The post-surgical report recommended another lumpectomy. The margin surrounding one of the lesions wasn’t quite sufficient to satisfy protocol. What if I elected not to undergo the knife again? My surgeon had no answer. She assumed I’d adopt the medical establishment’s advice.

So I took to the internet again and shared my findings with the radiation oncologist I’d met with in preparation for radiation. He opened his door and leisurely discussed the risks as well as my other concerns. If an errant cell had escaped near the surface of my breast, wouldn’t radiation kill it? In all probability, yes. Given everything, including the small increased risk, was I crazy to decline more cutting? “Not doing it is not unreasonable,” he said. I wrote that down.

Soon after, I underwent 23 consecutive radiation sessions. I cried every day. I emerged with fried skin. But bless them, the radiology team was compassionate, professional and patient.

My oncotype score rendered the additional benefit of chemotherapy less than one per cent (good news!), so I proceeded to the next round—hormone therapy discussions with my third doctor in the cancer labyrinth. Another test made me an ideal candidate for five years of daily drugs to drain more of my postmenopausal estrogen (the stuff that keeps you youthful), but statistically reduce my five-year risk of recurrence to four per cent. Poised to write the prescription, my doctor relented when I insisted on reading up first, scheduling me for a zoom call with two other medical professionals. I shook when the call was over, spent from the sales pitch.

Osteoporosis, increased cholesterol, heart problems, hair loss, muscle and joint pain, headaches, liver toxicity: These were some of the drug’s side effects. But some could be managed—with other drugs. I spoke with women who’d had bad experiences. I read about others who’d thrown their pills away. I’m hypersensitive to medication. I know my body. My risk of reoccurrence increased slightly without the drugs. The thought is hard enough to live with, without having to defend my decision to say “no.”

This was not my pre-cancer vision of a so-called medical safe space, where pink clad females padded about in fluffy slippers and cozy terry-cloth robes drinking mint-infused tea, trading wellness tips.

And my heart aches for women too scared, or without the strength or education to question the medical establishment’s ostensible one-size fits all protocols.

But since I stood up for myself, treatment interactions have improved. I laugh with the nurse who draws my blood. My nurse practitioner is kind, sharp, and deferential. My surgeon retired so now I have another. I’m extremely grateful for health insurance too—you should see the astronomical sums charged by hospitals and doctors without it!

Before one of my radiation sessions, I met a woman in the waiting room who’d been in remission for well more than five years—the benchmark when cancer is more likely to return. And then her cancer returned. She hadn’t “survived” it. I’ve read about and spoken with others with similar experiences. Isn’t dubbing cancer casualties “survivors” from the moment of diagnosis confusing and distressful? It is to me. According to a recent study, more than half of all cancer victims agree. And still the medical profession apparently knows best.

I try not to trade in negativity. Constant doom and gloom can edge out hope. I know “victim” is a charged word in our culture, but it’s more accurate. The prospect of recurrence is never completely behind us until the day we die of something other than breast cancer. Surviving is something we do, not something we are.

I drove to the post office last week to mail a package. Nausea gripped me while I waited in line, surveying the plethora of pink. I’d never seen the place that decorated for Christmas or Valentine’s Day. Now there are reminders everywhere, all 31 days of October.

Last year, after my final radiology session, the hospital worker at the front desk stopped me on my way out. “Do you want to ring the bell?” she asked. I hesitated, recalling the angry words I said to myself when I first got the news. But I’d summoned the grit to get that far. By then, I’d learned of so many other women who’d suffered the same bad luck as me. I’d taped their names to the radiation machine and prayed for them while the linear accelerator machine zapped me. I clanged that bell for them.

But, no, you won’t catch me wearing pink.

Beverly Willett is the author of Disassembly Required: A Memoir of Midlife Resurrection. She has just completed her first novel.