Susy Solino is a breast cancer survivor and patient advocate.

Susy Solino

When I was diagnosed with breast cancer, I accepted there would be things I couldn’t completely control: © stock.adobe.com.

When I was diagnosed with breast cancer, I accepted there would be things I couldn’t completely control: my treatment plan, the shape of my body after surgery, and the end of my ability to breastfeed. I was hoping for a cure but bracing for change. I was prepared for sacrifice.

What I didn’t expect was the informational black hole surrounding a particularly profound adjustment: losing all sensation in my chest post-mastectomy. I was given little information. I was offered no support. During my consultations, I specifically asked about losing feeling since the nerves in my breasts would be cut to remove the cancer. My question was met with shrugs. “This is just how it is,” they said. My care team’s message was clear: my survival trumped what they considered trivial concerns.

That dismissal hit harder than I expected. I began to doubt myself. Was it shallow to want to feel whole again? Was it selfish to care about something so “superficial” when people were trying to save my life?

I’ve since learned I wasn’t alone in those feelings. I wasn’t the only woman with hope of feeling her chest again after having life-saving surgery. A new nationwide survey of women who had mastectomies found that 80% underestimated the impact of sensation loss before surgery. More than half said none of their doctors even mentioned the possibility. Like me, many were left to process those complex emotions after the fact, in isolation.

One woman described it this way: “I thought I’d be okay with it, but I feel like I lost a part of myself.” Her sentiments could have been mine.

It’s a strange kind of grief to mourn something so personal and invisible. And it’s one that most people don’t talk about, including many in the medical community. But just because the loss is suffered in silence doesn’t mean it’s small.

The hardest part wasn’t considering a future where I’d never again feel a loved one’s head against my chest, the warmth of the shower, or even an intimate touch. It was the confusion and shame that came with it, the feeling that I was being emotional, senseless, or silly. Worse yet, that I was ungrateful.

But I wasn’t alone in that moment. My fiancé saw how much this affected me, and instead of brushing it off or shaming me for my feelings, he took it seriously. He did the research I didn’t even know how to begin; he started looking for answers, for hope, for surgeons who saw patients as people, not just cases.

That was the turning point. When someone showed me that my pain was real and valid, I started to believe it myself. And when I finally found a surgeon who acknowledged my concerns and offered real solutions, I felt seen, heard, and respected. It took strong advocacy and a surgeon unwilling to accept that “this is just how it is” to give me the chance to regain feeling in my chest.

Here’s what I know now: wanting to feel like yourself again isn’t shallow or superficial. It’s human. Sensation loss isn’t just a physical side effect. It touches every part of who you are. And women deserve to know that it matters.

I felt such compassion for the 75% of women who said they would have made different decisions about their reconstruction if they’d known there were options for restoring sensation. That number is staggering. It shows just how much room there is to improve the way healthcare teams inform and support patients by making sure they understand all of their options, not just the ones that are most commonly discussed.

Every woman deserves to have this information upfront, not just for her body, but for her peace of mind.

It’s great that doctors don’t want us to die. But it would be even better if they helped us live, too.

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Articles

Breast cancer patients often face unexpected challenges, such as the loss of chest sensation post-mastectomy, which is frequently overlooked by healthcare providers. Many women are not informed about this potential outcome, leading to feelings of isolation and grief. A significant number of women would have considered different reconstruction options if they had been aware of sensation restoration possibilities. Advocacy and informed decision-making are crucial for addressing these concerns. Patients deserve comprehensive information to make choices that align with their personal and emotional well-being.

When I was diagnosed with breast cancer, I accepted there would be things I couldn’t completely control.

Susy Solino

What No One Tells You About Life After Breast Cancer: Fighting for Care

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