My childhood best friend, Olivia, called me last week to tell me her big birthday news: At 26, she's been diagnosed with breast cancer so severe she needed an immediate double mastectomy. "You felt the lump and just knew?" I asked, waiting for gut-wrenching details about the breast self-examination gone wrong.
"No lump," she replied.
In America, young women are taught to always watch out for the lumps in our self-exams, because lumps equal breast cancer. But that's not always the case—asymptomatic breast cancer is rare, especially in young women, but up to five percent of breast cancer patients have inflammatory breast cancer, which does not present in lumps.
Olivia not only found herself facing breast cancer without classic symptoms,she also had one of the most aggressive cancers her doctors had ever seen. Olivia has been a 49ers cheerleader, a finalist on So You Think You Can Dance, and a dancer for pop stars like Madonna; she's never smoked cigarettes or done drugs, and she has no history of breast cancer in her family. Without lumps to signal their arrival, how could she know about the tumors spreading in her breasts?
Things like this don't happen to healthy, young girls like us, we kept thinking, Especially without the tell-tale lump.
For Olivia, the hint came in the form of blood inside her bra. "Nipple discharge is rare, and sometimes the nipple becomes inverted, or loses symmetry as a symptom of breast cancer," Dr. Melissa Accordino, her oncologist at Columbia University Hospital, told me. "Younger women might have breast pain, but really it's any sort of sudden changes to the breast that can indicate symptoms of a larger problem."
Weeks of headaches and hot flashes coupled with the bloody nipple were enough to get Olivia to call her doctor, but the doctor wasn't initially concerned, because there was no lump. "My family doctor's exact words were, 'I'm sure its nothing to be worried about, you're a healthy girl, there' s no family history, and there's no lump. But just to be safe let's do a mammogram,'" Olivia told me.
They had to redo the mammogram three times; the breast tissue of a young woman is dense, making it difficult to get a clear image. The radiologist was first to detect nine centimetersof cancerous calcium deposits in Olivia's left breast.
"It looked like a firework in my left breast. It was so spread out…" Olivia told me, trailing off as she remembered the gravity of the moment. The biopsy officially confirmed her diagnosis a few days later. When Olivia, shell-shocked and in denial, rejected the initial news from her doctor, she got a second and third opinion—all the doctors she spoke with agreed an emergency mastectomy was critical given how quickly the cancer was spreading.
A few nights before surgery, Olivia and I sipped white wine on my couch and had a good cry about how insanely unfair a double helping of breast cancer AND a double mastectomy was for any woman, let alone for a 26-year-old blonde bombshell with big dreams. Things like this don't happen to healthy, young girls like us, we kept thinking, Especially without the tell-tale lump.
Earlier this month, Olivia went in for a six-hour double mastectomy. She was one of the youngest women in the US to have this surgery under these conditions.
The surgery went smoothly, but it took longer than expected to cut out the breast cancer that permeated 87 percent of her breast tissue. With most mastectomies, reconstruction can be done at the same time. But because so much of Olivia's tissue was covered, there was no muscle left. So they inserted expanders into her chest that will gradually stretch the skin over three months while she receives regular injections of saline, then they'll put implants in to complete the reconstructive surgery.
The day of Olivia's mastectomy, I rushed to Columbia Hospital to see her after work and slept on the hospital floor beside her, nursing her throughout the night. Olivia had two massive drains for the blood coming out either side of her body, and dressings across her chest.
Doctors told Olivia that had she not gone to the hospital after discovering her bloody nipple, she wouldn't have made it much longer.
Thanks to improvements in technology and surgical procedure, a double mastectomy no longer has to mean permanent cosmetic consequences, and plastic surgeons worked to make sure Olivia's chest would look just as it had before the cancer.
But what can young women do to detect undetectable breast cancers? "Regular mammograms are recommended by 40 to 50 years old," said Accordino. "Before then, there's nothing but regular self breast exams and clinical breast exams. Evidence is not so great for self-exams, but we still recommend it every month just to know your body."
While she has a long road to recovery, Olivia is grateful the cancer was discovered when it was. "I was fortunate enough to have blood coming out of my nipple," she said. Olivia was extremely lucky: due to the placement of the cancer underneath her nipple, the symptoms appeared in a visual way that was hard to ignore. In some cases, it's simply persistent breast pain and tenderness that alert women to the problem.
Women can now undergo what's called a BRCA test to see if they have one of two genes that make them predisposed to breast and ovarian cancer. This test was recently popularized by Angelina Jolie, who took it and, when she confirmed she carried one of these genes, decided to controversially go through a voluntary double mastectomy even though she didn't have cancer. Accordino cautioned against these tests "unless [women] have significant risk factors, like family histories of ovarian cancer or breast cancer." But beyond the BRCA test, how can a young healthy young woman protect herself?
Across the board, the overarching advice given by patients and doctors alike is to listen to your body. Doctors told Olivia that had she not gone to the hospital after discovering her bloody nipple, she wouldn't have made it much longer. "My surgeon told me, flat out, if this would have gone for another year, I'd be dead. But because we caught it early, I'll be fine. And the crazy part is I was so religious about my self breast exams every month," Olivia recalled.
Olivia's fight isn't over yet. Last weekend, a post-surgery biopsy showed that the cancer is still there. She'll be on cancer treatment for the next ten years, and may also need an aggressive round of chemotherapy and egg-freezing treatment before she makes a full recovery. But Olivia is above all grateful that she listened to the small signs her body was giving her. "I've been guilty of thinking 'I'm young and strong and invincible,' but I knew something was wrong," she told me. "Fortunately I listened to my body, or else I wouldn't have been around to celebrate my 27th birthday. I'd rather be called crazy for going to the doctor too many times than be dead a year later because I thought I was making a big deal out of nothing."
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