Too many of us have stories of doctors not believing our pain, years spent being misdiagnosed, and struggles in accessing the care we need (from exorbitant costs to previous intimidating appointments). Often, health care obstacles are directly tied to medicine’s gender bias, as well as stigmas relating to our race, ethnicity, sexuality, non-binary gender identity, age, and income. In our series Pain Today, we are highlighting these stories through personal and reported essays, hoping to empower each other to advocate for our health in a way that much of the medical community does not.
“Robin Orli?” A nurse called out my name, peeling back the waiting room’s blue curtain. I cringed hearing her flip my last and first names.
“Yes?” I replied timidly.
“We’re ready for you. Please come with me.”
The nurse ushered me and my mom into a sterile examining room. I stripped my white cotton shirt, exposing my chest to a cold, unfriendly ultrasound technician. I lay down and raised my left arm as the technician prepared the lumpy skin on my breast for a scan by dabbing my boob with a tingly cotton swab. She started squirting cold blue gel over the lump. A white R2-D2-looking device began stroking my skin.
“How does it look? Does it look okay?” My mom asked her.
The technician didn’t respond.
“Does it look okay? What do you think?” My mom repeated.
“Ma’am, it’s not my job to give you an answer. The doctor on-call will be in in a second, okay?”
I glanced at the monitor, but couldn’t make sense of any of it. All I saw was a jumbled mess of pixels and lines. I strained my neck, trying to analyze the screen’s haze of weird white atoms, squinting, trying to self-diagnose.
“If I had a lump, I thought, then it had to have been cancer.”
My breast tumor, which seemed like it was warping my chest from the inside out, arrived one week after my 22nd birthday. It felt like a belated birthday gift that totally and completely shattered my own naïve perception of my body’s invincibility. After all, before the tumor, I was 22. I was going to live forever. Death was like an obsolete particle far off in the distance. I had a whole life to live first.
When I discovered the tumor in my college dorm room (in the shower, as lavender-scented soap suds dribbled down my chest), my heart started tumbling down a mountain in slow motion. If I had a lump, I thought, then it had to be cancer. I was the one out of all of my friends to have been struck by the lightning bolt of cancer. But I was too young to live out Samantha’s storyline in Sex and the City, or even Susan Sarandon’s role in Stepmom. I was too young for lumps.
When my biopsy results returned after a long and dreadful weeklong wait, I learned I had a fibroadenoma: a benign, non-cancerous mass made up of extra breast tissue. These usually feel soft and kind of squishy. According to American Cancer Society, fibroadenomas are super common among young women in their early 20s.
It’s been estimated that 10% of women have these benign lumps. Of course, sometimes women won’t even know they’re there. Sometimes they can be buried so deep inside the tissue and never ever rise to the surface. And they don’t mean you’re at any greater risk of developing breast cancer.
“I didn’t want to tell anyone about what I was going through. I didn’t want my friends to think I was sickly or fragile.”
As with most things science-y and complicated, there are tons of different types of these benign breast tumors. According to my biopsy report, I had a rare kind called Phyllodes (pronounced Full-Oy-Deez). Phyllodes tumors are fibroadenomas that can grow at a rapid rate. These tumors account for less than 1% of all fibroadenomas. They’re really, really rare—so rare in fact that my doctor submitted my medical case for study at Cedars Sinai Medical Center in Los Angeles. He’d never seen them before, but he knew I wasn’t alone, and he felt that the best way to figure out how to cope with my tumor was to weigh numerous professional medical opinions for the best solution possible. It wasn’t easy feeling like a lab rat being studied beneath a microscope.
The doctors decided together that since my tumor was going to grow in size and could get much larger, I needed to have it surgically removed. That also meant any breast tissue surrounding the tumor had to get chucked, which is standard procedure, just to make sure it won’t grow back in that spot.
Coming to terms with my diagnosis took time. I didn’t want to tell anyone about what I was going through. I didn’t want my friends to think I was sickly or fragile. I wanted to be the Orli who felt invincible, not the Orli who sat nervously in a waiting room. I wanted myself back.
But I had to remember one thing: My condition was never going to become cancer. It was benign. It was benign. I can’t even tell you how many times I repeated that phrase in my head that year. Or the year after that when I experienced a recurrence of the tumor, resulting in a second wave of exams, appointments, case studies, and procedures.
So why am I telling you all of this? A few reasons:
1) If you feel a lump, try not to freak out. There are many, many different types of breast tumors that will never become cancer. There’s absolutely no reason to assume the worst. A healthy dose of optimism is crucial. Still, you should get it checked out right away—to ease your mind and to get any necessary treatment as soon as possible.
2) Get checked by a doctor annually in your 20s during gynecological exams, and perform self-check breast exams. Planned Parenthood recommends getting to know what your breasts feel like. Find a doctor with whom you feel most comfortable. And if you have a family history of breast cancer, there’s no reason not to be proactive with these exams.
3) Remember that you’re never alone. Everybody has “stuff” that’s “wrong” with them. If it’s not a fibroadenoma, it’s something else. No one is perfect. No one is invincible, even if they’re only 22. The sooner I was able to come to terms with that, the sooner I was able to accept my condition. My tumors are a part of me. My surgical scars are reminders that I am part of a community of women around the world who must come to terms with elements of their bodies they don’t always love. That’s what makes us human.