(BPT) - When I was diagnosed with breast cancer at 36, I didn't think of a mastectomy as an amputation. But that's exactly what it is. A part of my body was removed to save my life. And with it went something I had not expected to lose: the ability to feel my chest.
I'd been told I could be numb. I didn't understand what that reality actually meant.
Before my mastectomy, sensation wasn't something I thought about. The warmth of someone's hand or the pressure of a seatbelt across my chest didn't require conscious attention for me to know it was there. My body simply told me what was happening.
Until it didn't.
When Your Body Doesn't Feel Like Your Body
During a mastectomy, nerves that provide feeling to the breast and chest are cut as part of the procedure. It is necessary to remove cancerous tissue. Without surgical intervention to reconstruct those nerves, the majority of women are left numb after a mastectomy. I was only told the day of my surgery that I might experience numbness. But it was an afterthought, just another side effect on a long list of risks and complications I was already trying to understand and reconcile. It sounded temporary. Manageable. Certainly not something that would fundamentally change the way I experience my own body. After surgery, my chest "healed" according to medical standards, but to me, it still felt unfamiliar and disconnected from the rest of my body. What I saw and what I felt no longer matched.
That disconnect is difficult to explain unless you've lived it.
It can make your body feel foreign. It can change intimacy, how you experience touch, how you move through completely ordinary moments. Numbness isn't visible. To the people around me, I looked healed. But healing and feeling whole aren't necessarily the same thing. Without anyone realizing it, I had to navigate an entirely new relationship with my body.
I hug people tighter because I can't fully feel it against my chest. I've burned myself without realizing it. Clothing and seatbelts can feel strange. I pay attention to pressure and temperature in ways I never had to before. Sometimes, there is the simple, unsettling realization that I'm touching my own body and can't feel it.
For me, one of the hardest parts was the shift from never thinking about sensation to thinking about it every day. Many times a day.
It's Not Just Me
For a long time, these experiences felt deeply isolating. They weren't the things people talked about when they discussed breast cancer survival. Then I read the results of a national survey of more than 300 women who had undergone mastectomy, and I saw myself in their shared experiences.
Nearly nine in 10 women reported experiencing chest numbness or loss of feeling. One in four reported burns, cuts or other injuries related to their numbness. More than half reported depression or sadness, and 57% said they no longer felt like the woman they once were.
But one stat struck me especially hard: 54% said they stayed silent because they felt they should "just be grateful."
I understand that silence. I survived the thing I feared most, yet I still grieve something I never expected to lose. Sometimes I wonder if I should feel that loss so deeply when I am fortunate to still be here.
Gratitude Doesn't Cancel Grief
There is enormous pressure around survivorship to be grateful. And I am grateful. I am alive. But it's possible to experience gratitude and grief together. Many of us do.
Grieving what cancer and treatment took from me doesn't diminish the gift of survival. Talking about numbness doesn't mean I don't appreciate the care that saved my life. Missing what my body used to feel like doesn't make me any less thankful to still be here.
Surviving changed me. And that's the part of survivorship I wish we talked about more openly. Gratitude and grief aren't opposites.
When numbness is invisible, it is easy for everyone around you — and eventually even for you — to assume that once the scars heal, you're okay. But the end of treatment isn't necessarily the end of what cancer changes for survivors.
There Is Life After Cancer
Maybe you're facing a mastectomy now. Maybe you had one years ago and you're trying to find the words for something you've felt (or lost) all along. Or maybe you love someone who has survived breast cancer and never realized this could be part of her experience.
What I wish I had understood is that numbness isn't a small side effect. It's not a footnote. It changes the way you move through the world and how you experience your own body.
The cancer may be gone, but I still carry the changes it brought into my life.
I don't share this to diminish survival. I share it because I survived breast cancer, but healing didn't make me feel whole again. And no woman should have to discover and live with that alone.
Cara Bisegna is a breast cancer survivor and a patient advocate focused on improving education and informed decision-making in women's health. Cara is a paid spokesperson for Axogen, Inc.
