Living With 'Scanxiety' After Breast Cancer
I joined a new yoga studio a couple weeks ago. My first day there, as I was rolling up my mat after practice, the teacher came and sat beside me. "Is that scar something we should discuss?" she asked, motioning to the small curve etched on one side of my chest, a few inches in from my underarm.
Probably. After all, that scar is the reason I can't feel under my left arm -- why I favor that shoulder. It's the reason that when I walk into the studio on a crisp autumn day, I'm sweating. It's why I'm often under the weather and why, every few months, I become an anxiety factory. So I glanced in my new teacher's eyes, and then looked away, and then told her that two years ago, I had breast cancer.
She responded with that Look -- the subtle eye-widening and quick inhale, a mix of horror and pity -- that I get when the pharmacist hands me my cancer-drug prescription, or I explain to the flu-shot nurse why she can’t inject my left arm. (My lumpectomy side is ineligible.)
After the Look, inevitably: "But you're so young!" Yes, I said. I was 26 when I was diagnosed with breast cancer.
The thing about having breast cancer at 26 -- there are many things, but the one that’s been weighing on my mind, two years post-diagnosis -- is that it never fully leaves. That means that, if I live a normal lifespan, my post-cancer normal could last some 60 years. That’s a long time to be scared, to feel fragile, to wonder if every unrecognizable ache is the harbinger of recurrence.
That’s not how most people in their 20s live -- walking around picturing their youthful, pretty breasts as homicidal. My contemporaries aren’t well-versed in recurrence risks and treatment protocols. So they tend to think my breast cancer happened and is over. And older folks dislike the implications I present: If I can get breast cancer at 26, against the odds, nobody is safe. When anyone -- cancer survivors aside -- asks how I’m doing, I can see that the answer they want is “Great,” not “I still have treatment nightmares and wake up trembling in a tamoxifen-induced night sweat.”
To be clear, it’s unlikely I’ll ever get cancer again. But it was also unlikely to happen the first time. And I know of at least two women who were NED -- ”no evidence of disease” -- for decades before their original breast cancers came roaring back, spreading to other organs. This is a thing that happens, and there is no cure for late-stage breast cancer.
My surgeon tells me not to spend my days absorbed in terrified theorizing. “You went through treatment so you could live,” she told me at my most recent screening appointment.
“But what if it comes back?” I ask her, for the umpteenth time, tears coursing down my cheeks, dripping off my chin, wetting the collar of my hospital gown. I always lose it in her office, because unlike most other folks, she understands -- and isn’t scared by -- the fact that cancer continues after treatment ends. And I love her because, for the umpteenth time, with no hint of impatience, she hands me a tissue, gives me a hug and answers, “You’re doing everything in your power to keep that from happening. That’s all you can do.”
It’s true: I am doing everything that I can. Two years ago, shortly after finding the bump, I had a lumpectomy and then 35 days of radiation -- four months that left me tattooed, burned and spent. But I was supported throughout the process; I regularly beelined straight from radiation to my breast surgeon’s waiting room, where I could count on her nurse practitioner to coax a smile, despite my scorched torso. “You’re leaking again,” she’d say when I cried, and then she'd tell me distracting anecdotes about her toddler.
After treatment ends, that support fades, even though aftereffects serve as ongoing cancer reminders. (As though I might forget.) The treatment ravaged my immune system, and I spent the next year and a half becoming a cold-medicine and ginger-candy connoisseur. And the slice my surgeon made to remove lymph nodes to biopsy also severed some nerves, so I lost feeling on part of my tricep and underarm (sensation I miss when a babysitting charge turns tickle monster or that area is part of a yoga pose).
I’m partway through an additional treatment: I’m taking five years of an estrogen-blocking pill called tamoxifen to cut my recurrence risk, and it comes with its own unsavory side effects. By hindering estrogen, tamoxifen causes hormonal insanity. I get PMS and menopausal hot flashes simultaneously. On top of all this are at least five yearly visits to different cancer doctors, which I anticipate with scanxiety attacks and endure by disassociating as I’m asked, again and again, to remove my top and submit to clinical probing.
Even though I look like -- and am -- a 20-something bursting with wry sarcasm and workaholic tendencies, cancer lurks perpetually on the periphery, occasionally roaring to the fore for a cameo. And that may not change before my final curtain call.
With that in mind, here are three tips for dealing:
1. Find a community that gets it. I've found friends and support both through the organization Stupid Cancer, which supports young adults, and the Twitter hashtag #BCSM ("breast cancer social media"). When you feel like nobody gets your situation, people who have been through similar hardships are invaluable.
2. Don't go to appointments alone. I bring a childhood friend with me to the oncologist. Having her there to lean on makes appointments less nerve-wracking -- and allows for unexpected bouts of laughter.
3. Treat yourself. Life's too short. If you want a cookie, eat a cookie. And enjoy it. Then have a spa day.