Taking Back Your Power: A Self-Advocacy Guide for Your Masectomy

Imagine being diagnosed with breast cancer. Your focus is on one thing: survival.

Your doctor recommends a mastectomy, and you know it’s the right choice. But surviving the treatment and surgery is just the first battle. What follows is a deeply personal struggle that strikes at the heart of your identity and sense of self: losing sensation in your chest. You can’t stop the questions running through your mind. What if I don’t feel like myself again? How will it change my relationship with myself or my loved ones? Is it even possible to reclaim a sense of wholeness after such a profound loss?

A new survey of women who’ve undergone mastectomy found that nearly 9 in 10 report loss of sensation in the chest, and many described how that invisible change affected everything from safety to intimacy and emotional well-being.

For many women, breast reconstruction is a crucial step toward reclaiming their bodies and their confidence after mastectomy. But what many don’t realize is that the traditional procedure alone doesn’t restore sensation—because the nerves that provide feeling to the chest are severed during mastectomy.

But there’s good news. The 150,000+ patients who have breast reconstruction each year don’t have to accept this as their reality. By adding nerve repair to reconstruction surgery, it’s possible to restore sensation to the breasts after mastectomy, offering a pathway to not just recovery but wholeness. As a plastic surgeon specializing in breast reconstruction and nerve repair, I’ve seen firsthand the difference it makes when women feel empowered to ask questions, advocate for themselves, and make informed decisions about their care.

Why Sensation Matters

Nerves do more than transmit touch—they help us sense temperature, pressure, and pain, keeping us safe and aware of our surroundings. They also play a role in allowing our brains to understand where different parts of our bodies are in space. When nerves are damaged or removed, these essential functions are lost. Think about numbness in your face and mouth after a dental procedure. There’s a thickness, a heaviness, but no real feeling—at least until the Novocain wears off.

Now think about that same thing in your chest. Permanently.

This is especially significant after a mastectomy, which requires nerves to be cut. The nerves in the chest provide protective sensation, alerting you to things like the poke of a bra underwire, the singe of a hot curling iron, or even the warmth of a loved one’s hug. They also contribute to a sense of body awareness, comfort, and personal connection. Yet, many women aren’t told that a traditional mastectomy severs these nerves, leaving the chest permanently numb.

Nerve repair can help restore sensation, allowing women to regain not just physical awareness but also a sense of normalcy.

Advocating for Yourself

Advocacy starts with being informed and asking the right questions. Many surgeons focus on removing the cancer and reconstructing the breast’s shape, but sensation isn’t always part of the conversation. Here are four ways you can take charge:

1. Ask about nerve repair: During your consultation, ask your surgeon if they offer nerve repair with breast reconstruction. If they don’t, find a surgeon who does.
2. Understand your options: There are different methods of breast reconstruction. While implant-based and autologous flap reconstruction each have considerations to evaluate, nerve repair can often be integrated into either approach.
3. Discuss sensory outcomes: It’s important to set realistic expectations. While nerve repair can restore sensation, it won’t feel exactly the same. That said, many patients who have undergone nerve repair report improvements in their level of chest sensation, positively impacting their comfort and sense of well-being.
4. Prepare for the journey: Nerves regrow slowly, and sensation doesn’t return overnight. It can take six months to a year—or more—for sensation to return. Be patient with your body and celebrate small milestones along the way.

Why Numbness Isn’t ‘Good Enough’

There’s a mindset in breast cancer care that women should “just be grateful” to be alive. Forget that! You fought the disease, and you beat it. Yes, gratitude is important, but it shouldn’t stop you from wanting more for yourself. You deserve to live a full, vibrant life – and the opportunity to regain sensation and get back to your “normal.”

A mastectomy is an amputation, but nobody talks about it that way. And with an amputation, there’s a very real risk of phantom limb syndrome and accompanying pain. Studies have shown that nerve repair can reduce the risk of post-mastectomy nerve pain and other abnormal sensations while improving overall quality of life.

Resources for Your Journey

If you’re considering mastectomy or are in the early stages of reconstruction planning, there are resources to help you learn more and advocate for what’s important to you.

First, ask for patient stories. It can be awkward to ask others to share their personal journeys, but you’d be surprised how many women are willing to help others going through similar diagnoses. Hearing these stories can clear up any questions and give you greater confidence.

Next, explore online resources. Patient blogs and websites dedicated to mastectomy and reconstruction can be incredibly insightful. They can give you detailed information about nerve reconstruction, including what to expect before, during, and after the procedure.

Finally, don’t hesitate to find a specialist. If your current care team doesn’t offer nerve repair, you have the right to seek another opinion. Look for a plastic surgeon who specializes in nerve reconstruction and can provide options tailored to your needs. It’s your body, your life, and your decision—finding the right surgeon can make all the difference.

A Future Beyond Cancer

As women, we’re taught to put everyone else first—to endure discomfort and sacrifice for the greater good. But let me be clear: you do not have to choose between survival and a full life with sensation. It’s possible to have both. With the right information and a willingness to advocate for yourself, you can make decisions that honor your survival and lead to a fulfilling life after cancer.

So, ask questions. Be bold. Demand care that considers every part of you—not just the cancer. You deserve it.

Image Source: ID 98798185 ©
Bialasiewicz | Dreamstime.com