I've Had Breast Cancer Twice – And I'm Still Too Young For A Routine Mammogram

by Rachel Garlinghouse
Originally Published: 
Rachel Garlinghouse/TikTok

I was almost done with chemo and was feeling good. I gathered up our swimming gear and followed my kids and husband to the pool, reading to soak up some sun and play. On a whim, I decided to shoot a video next to the pool, showing off my mastectomy scars, chemo port, and chest wall excision scars. The response floored me.

Within a week, my video had been viewed over two million times. The comments were overwhelmingly positive. Some responders shared their own breast cancer journeys or that of a loved one. Others offered support and encouragement. I had no idea when I posted the video that anyone would even care, but I’m thankful they did. My entire goal is to bring attention to breast cancer awareness.

When you watch the video, you likely see a woman who appears to be highly confident. I’ve been told my numerous friends, family, and followers that I am so brave and strong. They would never have the courage to post themselves topless and breastless on social media. The truth is, posting myself in such a vulnerable way absolutely takes bravery and strength, but it also takes conviction.

I don’t want my two breast cancer journeys to be held private. After all, there’s been a whole lot of agony and anxiety, and holding that in or keeping it to myself is just way too much work. The fact is, when women talk about their breast cancer, or any personal journey, they bring awareness and may be helping another person in unimaginable ways. The beauty of social media is that when a person’s account is public, anyone can access it and perhaps (and hopefully) benefit from what’s shared.

My journey started in 2017 when I discovered my third breast lump during a self-exam. I’d had two previous lumps, both benign, that I chose to have removed. This time, I suspected that I’d once again encountered a harmless mass, but I chose to see my doctor. She ordered an ultrasound and mammogram (my first). The lump was seen on the ultrasound, but the radiologist deemed it unsuspicious and recommended we take a wait-and-see approach. I was told to come back in six months for repeat scans.

I was initially quite relieved—as you can imagine. But with each passing day, I had a nagging sense that something wasn’t right. I sought a second opinion. The breast surgeon I consulted with did another ultrasound and agreed to biopsy the mass. Once the biopsy was complete, my family and I went on vacation. When we returned, I breezed into the surgeon’s office, iced coffee in hand, to get my results. That’s when my world fell apart.

She walked into the room, cradling an iPad, and told me the words I will never, ever forget. She said, “I always hate to tell women this, but you have breast cancer.” I was shocked, only hearing some of what she continued to say to me, most of it scary words like chemotherapy, genetic testing, and mastectomy. I left with pamphlets featuring flowers and elderly women on the covers.

I couldn’t believe it. I walked into the appointment as one person and in a moment, everything felt like it had changed. I left my appointment as a person with breast cancer, someone who would be making tough medical decisions in the midst or working and raising four kids (one of whom was an infant at the time). Having breast cancer wasn’t ever in my plans or on my radar. I was only thirty-five years old.

The next few months were an absolute hurricane of events and emotions. My genetic tests for the BRCA1 and BRCA2 genes were negative. I found a new breast surgeon, one who presented me with two surgical and treatment options. I had an MRI, bloodwork, and had appointments with a radiologist and an oncologist. Then there was the biggest event: a bilateral, direct-to-implant mastectomy with a two month recovery.

I openly talked about my breast cancer journey then, and I was told I had a low chance of recurrence. I attend therapy more routinely to work on my medical trauma, wrote articles about breast cancer, and urged everyone I knew to do their self-breast exams every month.

Then last year, I got sick and sicker with a constellation of symptoms and no definitive answers. I considered myself to be a healthy person. I exercised regularly and ate healthy, so why did I have increasing anxiety, joint pain and swelling, brain fog, terrible fatigue, new food sensitivities, and about twenty other symptoms. What was going on? I joined a Facebook group discussing the possible issues with breast implants, and I quickly found my answer. I had breast implant illness.

I contacted my plastic surgeon to schedule my explant surgery. I wanted the silicone bags out of my body as soon as possible. I was desperate to feel healthy again after such a long health battle. What I thought would be a quick process turned out to be much more. In the midst of waiting to have my implants removed, I felt a lump in my chest wall. Several ultrasounds and a biopsy later, I was diagnosed with breast cancer for a second time.

I’ve had two surgeries to remove the cancerous mass, my implants, and install a chemo port. I’ve been through twelve rounds of chemotherapy and immunotherapy, and I start thirty-three rounds of radiation soon. I’ll continue immunotherapy until next spring. I’m tired just typing all this. The amount of physical, mental, emotional, and spiritual energy it takes to battle breast cancer—not just once, but twice—is insurmountable.

Thus, I posted my video. I want others to know that they must take a few minutes out of their day, once a month every month, and do a self-breast exam. Despite how hard my journey has been, my self exams have been the key to my early detection—twice. After all, I am still too young for a routine mammogram. Had I not been checking myself, had I ignored my body’s signals to see a surgeon, I cannot even imagine how bad the outcome would be.

One in eight women will face an invasive breast cancer diagnosis in her lifetime, and it’s not her (or my) fault. Cancer is a beast, a jerk, and a liar. Of those diagnosed, 11% will be under age forty-five, like me. I post to bring awareness, but also to reduce the shame that comes with being a cancer patient. I also want to remind women my age that they absolutely need to advocate for themselves and take charge of their breast health, because most do not yet qualify for a yearly mammogram.

I’m thankful for the opportunity social media offers. Of course, it can be a fun playground for silly pet and kid videos, fashion, home décor, and more, but it’s also a place where I can take ownership of my journey and remind other women to check their breasts.

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