This Is What No One Tells You About Surviving Breast Cancer

In the weeks and months after the best-possible outcome, I felt lost.
Just after my mastectomy.
Just after my mastectomy.
Courtesy of Jennifer Bringle

A few weeks ago, my husband and I were in the car on our way to dinner to celebrate our seventh wedding anniversary. We cracked jokes about making it that long and marveled at all that had happened since our wedding day and what could change in seven more years ― how old we’d be, how our son would grow, where we might live.

“I hope I make it that long,” I said offhandedly. My husband stopped cold.

“What do you mean by that?” he asked, clearly taken aback. “Do you think we’ll get divorced by then?”

“No, of course not,” I laughed, genuinely surprised he had misunderstood me. “I just hope I’m not dead by then.”

Again, he was quiet. Then he asked, “Do you think about dying all the time?”

I thought for a minute and then replied, “Yes. Of course I do.”

When I was diagnosed with Stage 2 breast cancer two years ago at age 37, I felt oddly lucky. Sure, cancer is a pretty terrible hand to be dealt, but I’d found it early. And it was hormone-receptor positive, meaning it was more likely to respond favorably to treatment and there would be more treatment options available. I was terrified, but I also felt wrapped in the cocoon of the cancer treatment process ― oncologists and surgeons and nurses all constantly tending to me and assuring me everything would be OK.

Once treatment began ― months of chemotherapy followed by a double mastectomy ― I fell into survival mode, trying to just make it through that day’s infusion, the next day’s side effects, post-surgery recovery and, ultimately, the disease itself. While treatment is still a difficult and frightening time, there’s also a weird sense of comfort about it. There’s a predictable routine of appointments, blood draws, check in, check out. There’s a measurable goal you’re working toward. You have a focus and a plan, and you’re really forced to take things one day at a time.

After my mastectomy, I got the fantastic news that my pathology report was clean ― I’d had a full response to the chemo and there was no cancer remaining in the breast tissue or my lymph nodes. Cue the utter relief.

But in the weeks and months after this best-possible outcome, I felt lost.

In the perky pink world of breast cancer awareness, survivors are depicted as these smiling, carefree archetypes. They survived! They’re winners! And they’re so very happy!

The reality is not quite so sparkly. Physically, my body was kind of a mess. My reconstructed breasts were misshapen and almost completely numb from my mastectomy. (Let me put to rest the misconception that reconstructive surgery is akin to getting a boob job.) My hair was growing back, but the chemo made it return super curly and hard to manage. Chemo also threw me into early menopause, which kicked in in earnest after I had my ovaries removed due to my BRCA-positive status. (This gene mutation puts carriers at a higher risk of breast and ovarian cancers.) I even lost a toenail due to the chemo.

Mentally, I was in even worse shape. Since I wasn’t focused on treatment, I had plenty of time to obsess about the possibility of recurrence and metastasis. Every little ache or pain sent me into a spiral of fear and anxiety. Was that backache a tumor on my spine? Did my splitting headache mean the cancer had spread to my brain?

I’d sit up for hours at night, consulting Dr. Google on my phone and trolling breast cancer message boards for people with similar symptoms who ended up being OK. I realized a lot of this was completely irrational. But at the same time, a reality of breast cancer survivors ― even those with early-stage diagnoses and positive treatment outcomes ― is that there is always a chance of the disease coming back or spreading.

According to Metavivor, a nonprofit advocacy group for awareness and research of Stage 4 breast cancer, 30 percent of those who are diagnosed with early-stage breast cancer will experience metastasis. So, my paranoia wasn’t completely unfounded.

In the midst of this, I realized how completely unprepared I was for life after cancer. When you’re in treatment, everyone rallies around to help you through it ― I felt almost overwhelmed by the assistance and good wishes I received. You have a team of doctors and nurses at the ready to respond to any issue that may arise. And there’s so much information and support available to help you navigate chemo, surgery and radiation.

But then treatment ends. Your hair grows back, and you don’t look obviously like a sick person. Doctor appointments taper from weekly to monthly to yearly, and everyone seems to go back to their normal lives. And they just assume you’re doing the same. But for me, nothing felt normal.

Even my husband, who’d been in the trenches with me the whole time, seemed to breathe a sigh of relief, while I was still holding my breath.

One night I was in my son’s room, Googling symptoms while he played. I suddenly realized he was crying because he’d been asking me to read him a book and I was too preoccupied with self-diagnosis to even realize he was talking to me. I knew I needed to address the psychological debris left from cancer.

I started seeing a therapist who specialized in cancer patients, and she introduced me to meditation as a coping tool for dealing with my anxiety. Learning to stay in the moment as a way to help muffle the “what-ifs” of a future I couldn’t control made a big difference for me. And she helped me acknowledge that if something bad is going to happen, no amount of worrying on my part is going to prevent that inevitability ― I had to come to terms with the fact that I have no control over this situation.

As with most things, time proved a balm, too, and I could see a significant decrease in my anxiety and fear two years removed from my ordeal. But that said, I still struggle. I still have bad days when the fear takes over. I still consult Dr. Google (though not nearly as much as I once did). And I still feel those familiar waves of panic when I think about the possibility that my achy back is more than just a pulled muscle.

This is the reality of life after breast cancer ― or any cancer, I imagine. Once your body has betrayed you in such a vicious way, it’s nearly impossible to ever trust it again. When you realize your own cells have the capability to turn on you, to actually try to kill you, it’s really hard to forget.

So, yes, I think about death a lot. While I’m always aware that another disaster could be waiting to strike, I try to use that preoccupation in a positive way ― not sweating the small stuff, being more present and, of course, not taking my current good health for granted.

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