Navigating Breast Cancer Can Be a Journey of Hope and Togetherness

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.

Facing Fear and Finding Strength

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, chest sensation — 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.

3 Tips for Patients With Breast Cancer

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.
  
• Advocate for yourself. 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 life after cancer. 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.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.