Janet Gerlach

Patient advocate Janet Gerlach says reconstruction surgery helps patients feel more "normal" and confident after treatment.

Many of us who’ve been through breast cancer journeys have felt that, said that, cried that, questioned that and probably felt everything in between as we tried to wrap our minds around our individual experiences — whether our breast cancer journey has included an active diagnosis or taking preventative measures due to a high lifetime risk.

It can be a long, arduous and nonlinear path toward finding “normal” again.

While it can mean different things to different people, there does seem to be one ubiquitous characteristic across the spectrum of “normal”— to 

I’ve heard it from patients I’ve worked with at a cancer center where I’m the program director, supporting patients with breast cancer as they navigate through their journeys. And I’ve spoken with others from across the country on a volunteer basis who’ve shared similar wants and experiences.

For me, I wanted natural-feeling and -looking breasts after my prophylactic mastectomy. I wanted to maintain my silhouette, and I didn’t mind if I had slight asymmetries in my reconstruction because I knew those would help me feel like me.

I’ve learned — and continue to learn — what “normal” can mean.

Over the last couple of decades, advancements in reconstruction options have enabled us to each look like our own “normal.” So that as the scars fade and emotions get processed, we’re in a version of our bodies we can learn to be okay with. This is a big leap forward from my grandma’s generation when there weren’t any options.

And lately there’s been more of a focus on being able to 

—through restoring sensation in the chest.

Chest sensation is something I get asked about regularly in my work. While I don’t have a medical background — I’m just passionate about helping others through their cancer journeys — part of my job is helping patients prepare for appointments by discussing what they can expect, talking through coping mechanisms and answering questions they might have.

And something we talk about frequently is how the literal feeling of sensation will change, especially post-mastectomy, including how restoring sensation to the chest can be possible, what the new “normal” might feel like and how it can affect relationships.

When I got my prophylactic mastectomy, sensation was still really important to me, but I didn’t have such an option. I want others to know they don’t have to accept the same reality.

To help the learning process and potentially inspire conversations with your care team, here are some of the sensation-related questions I get asked most frequently.

If you are getting a mastectomy, it is, unfortunately, quite common to lose sensation in the chest, often to the point of numbness. This happens when nerves are cut — an unavoidable part of any surgery — to remove the breast tissue and nothing is done to repair the nerves.

Nerves enable us to feel touch, temperature and pain, and they run throughout our entire bodies. When nerves are cut, they lose their ability to send signals to the brain, resulting in numbness that is often permanent.

How Would Losing Sensation in My Chest Affect My Everyday Life?

Think of every time you take a shower. Step out into the sunshine. Hug a loved one. And on a more personal note, have physical and emotional intimate experiences.

Those moments would essentially be gone. They’d lose their power that connects us to ourselves and the world around us because you’d no longer be able to feel them.

Not being able to feel also poses a safety risk.

Sunburns, cooking-related injuries, bra underwires poking into skin, curling or flat irons touching skin, heating pads being too hot or left on for too long — those with chest numbness are at a higher risk of experiencing everyday injuries that could be avoided.

Beyond the physical ramifications, chest numbness affects how we perceive our quality of life in an emotional sense too. Not being able to feel, sometimes sweeping as far as from the clavicle to the belly button, can be incredibly disorienting and distracting from daily life. Getting dressed can feel awkward. It can be embarrassing if a swimsuit top becomes unknowingly askew, or workout clothes aren’t secure. That part of your body can feel like it’s no longer part of you. Living with numbness can be a constant reminder of your cancer journey.

What Can Be Done So That I Can Have Sensation?

It’s possible to regain sensation following mastectomy through breast neurotization, a surgical technique that has the potential to restore sensation to the chest over time. It requires two surgeons to complete — a breast surgeon, who performs the mastectomy, and a plastic reconstructive surgeon, the one who performs the reconstruction.

During the mastectomy, the breast surgeon identifies nerves that might be suitable for neurotization, communicating what they’re seeing to the plastic surgeon. They set a critical foundation so the plastic surgeon can connect the identified nerves to an allograft during reconstruction.

Surgeon teams who are trained in the technique will be able to give you a more specific vision of how they plan to approach your case.

Everyone’s experience is different, from where sensation starts to return first to how fast it returns. It’s normal for it to take 18 months to two years for it to return, but less than that is also normal. Some patients have shared that they feel zaps and tingles — which is a good sign the nerves are starting to regrow.

Where Do You Recommend Looking for More Information?

As always, the information I share doesn’t replace speaking with your care team. Consult with them on what’s possible and if they offer breast neurotization. Beyond that, connect with others in the breast cancer community to learn more about and from their experiences.

It gives me so much hope that with each generation, the future of breast cancer care will be better off. I’m hopeful for my daughters and others like them, who will one day have to face their own journeys and make their own tough decisions. I hope that the options continue to prioritize what patients want and need, removing cancer more effectively and enabling fuller lives to be led — until breast cancer is gone for good.

Janet Gerlach is the program director at the Friedman Center for Breast and Lymphatic Surgery, where she lives out her passion for patient advocacy. She also coordinates the team, builds relationships and leads community events.

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Articles

Breast cancer journeys often involve navigating complex emotions and redefining "normal." Advances in breast reconstruction, including breast neurotization, offer options to restore sensation post-mastectomy, addressing both physical and emotional aspects of recovery. Loss of chest sensation can impact daily life and safety, but surgical techniques now exist to potentially regain it. The process involves collaboration between breast and plastic surgeons, with recovery times varying. Patients are encouraged to consult their care teams and connect with the breast cancer community for support and information.

A patient advocate says that patients with breast cancer may find it challenging to feel "normal," but reconstruction advancements may help.

Breast Cancer Journeys and the Quest to Feel Normal Again

When Janet discovered she had the BRCA mutation, she did not know anyone else going through a similar experience.

Breast and ovarian cancers have a long legacy in my family. My grandma, aunts, cousins and many relatives before them have all been diagnosed with breast or ovarian cancer — sometimes both — making cancer a household term growing up. It was always a constant worry of who was going to be diagnosed next. It was never a matter of “if,”but more so a matter of “when.”

After watching my loved ones navigate cancer, eventually it was my turn to take it head on, bringing a mixture of fear, loneliness and strength as I faced my own mortality and high risk for developing cancer.

It was not easy, but I was lucky, and I was able to find what drives me in life: an incredibly strong passion for helping other women through their breast cancer journeys.

It’s why I advocate for patients in both my profession and volunteer capacity. It’s also why I’m sharing my own story and what I’ve learned over the years.

Like many women today, in my 20s I learned I was BRCA1 positive. But unlike the BRCA community today, I didn’t know anyone my age going through something similar nor did I tell anyone about it.

Because of my family history, I was among the first to undergo genetic testing in the late 1990s. I thought I was prepared for any result after taking care of many family members since I was a young girl as they suffered through their journeys.

But learning that I tested positive for the BRCA1 mutation and, as a result per Johns Hopkins University, had an 85% lifetime chance of developing breast cancer and a 46% chance of ovarian cancer was — as I’m sure you can imagine — devastating.

That kind of diagnosis at that time was detrimental to job security, health insurance and life insurance. Having just started my career in New York City, I was scared, so I basically went into hiding about it, keeping my appointments from my employer and friends. It was incredibly lonely.

I had two options: get a prophylactic mastectomy or undergo diligent screening, also known as “surveillance,” every three months and run the risk of developing cancer.

I ended up deciding to take a risk and undergo surveillance. While it would require more of my time and energy in the short term, the consequences from the mastectomy, such as poor reconstruction options that were nowhere near what they are today and losing sensation in my chest for the rest of my life, were not things I could wrap my head around. So, I ran back and forth to screening appointments during my lunch hour, not telling anyone for many years, and life marched on.

Fast forward 15 years, two children, a lot of false positive MRIs and mammograms, and numerous breast and ovarian biopsies later, I decided it was time to take preventative surgical action to reduce my cancer risk. I could no longer put my daughters to bed with a clear conscience, knowing there was more I could do to ensure I would be here to raise them.

I prioritized having my ovaries removed first, on the heels of which I thought I’d get my prophylactic mastectomy. But I went into surgically induced menopause, and it felt like I had aged 10 years in 10 minutes. I felt less feminine. Less whole. Less attractive. Thinking about getting a mastectomy on top of that was debilitating. It took two years to get back on my game and to gain enough confidence and strength to put myself through something like that again.

A critical piece of that was going to be finding a care team that understood what mattered to me. I knew I wanted to look as natural as possible because that was how I could feel like me again — even if it meant little asymmetries in my reconstruction. I didn’t care. At the time, DIEP flaps (which is a procedure where the breasts are reconstructed with blood vessels, skin and fat taken from the lower abdomen) were not widely performed but were starting to become more accessible. I met with several surgeons who simply were not hearing me. When I met with the surgical team that I ultimately ended up moving forward with, it was the first time I left an appointment feeling like I had a good option, and my voice was finally heard.

I underwent a prophylactic bilateral mastectomy (surgical removal of both breasts to decreased breast cancer risk) with DIEP flap reconstruction. While not an easy decision, I approached it with a positive mindset, and I came to realize a few things.

I realized how far breast cancer care had come. From the days of my grandma when there weren’t reconstruction options to my surgery where my own tissue was used to create natural-looking breasts. Even in the years since my surgery, 

 — which was still important to me but wasn’t an option — can now potentially be restored over time through surgical technique. We still have a long way to go, and I’m hopeful about the world of options that my daughters will one day have when they inevitably have to make their own decisions.

The other realization I had was that everything I had been through up to that point had ignited a strong passion inside of me — supporting other women as they navigated their own breast cancer journeys — and that would become my life’s work. Both through my job or volunteering, I listen to, learn from and do my best to empower others so they know they have someone in their corner and have the tools they need to advocate for themselves.

From speaking with many women across the country to my own experience, I’ve learned a lot about navigating breast cancer. Here are three tips I hope will bring you comfort and strength, whether you have an active diagnosis, are high risk or are a caretaker.

Be patient with yourself and the process. 

There is no overnight fix. It’s both a physical and an emotional evolution that may take several years. You might feel good one day, and the next day might be harder. That’s OK. Connect with other patients, find support groups. Find peace and solace in knowing you are not alone.


 I would’ve had a very different surgery if I had settled. I was persistent and kept searching for a care team who I felt was actually hearing what I was saying and because of that, I believe I got the best option for me at that time. No one knows your body or what’s best for you better than you. Trust yourself in knowing what feels right.


 There is always hope. While decreasing your risk or removing the cancer will always be the top priority, remember to still think about and push for what you want your quality of life to be like post-surgery. Consider how sensation plays a role in your life and how your life would potentially change without it. There are surgical options available that can potentially restore sensation over time. Talk with other patients to get their perspectives and with your care team about what’s possible.

While I’ll always remember what I’ve been through, I no longer wake up thinking about it. The physical and emotional scars have long faded. I feel fortunate to be here for my daughters, my family and the breast cancer community. From my grandmother’s treatment to my own, I’ve witnessed incredible progress in breast cancer care, filling me with hope for the future. However, I won’t stop advocating for continued progress and patient empowerment — not just for my own daughters but for all women.

Janet Gerlach is the program director at the Friedman Center for Breast and Lymphatic Surgery in Lake Success, New York, where she lives out her passion for patient advocacy. She also coordinates the team, builds relationships and leads community events.

This post was written and submitted by Janet Gerlach. The article reflects the views of Gerlach and not of CURE®. This is also not supposed to be intended as medical advice.

I watched my family members go through breast and ovarian cancer diagnoses, and knew that one day, I’d have my own major medical decisions to make. 

Janet Gerlach

Breast Cancer Journeys and the Quest to Feel Normal Again

Navigating Breast Cancer Can Be a Journey of Hope and Togetherness

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