‘I Felt Like I Was Alone:’ What It's Like to Fight Breast Cancer in Your 20s

"It's almost as if you have to get through the gritty, terrible, ugly thoughts to be able to reach the positive side."

by Molly Oswaks
Oct 14 2016, 4:03pm

Illustration by Vivian Shih

As she was trying on her wedding dress for the first time, Julia Filo felt an unfamiliar lump in her left breast. "The initial reaction is always to freak out and be really shocked," she says, "but I was obviously a little distracted, putting on my wedding dress, so I kind of put it in the back of my mind."

Only 24 at the time, she had no idea that the next year would be a blur of doctor's appointments and hospital stays. In fact, when she visited her gynecologist the following week, the doctor couldn't feel anything; a few days later, she went to a radiologist, but the ultrasound results came back perfectly ordinary.

Despite the medical reassurances, however, she continued to feel what she calls a palpable "ping pong ball-sized" lump in her breast. Within a few months, it had grown to the size of a baseball. "So I repeated the process," Julia tells me from her home in Baltimore. "I went back to my gynecologist; she did the exam, and this time she could feel something. I went back for an ultrasound, and this time directly after the ultrasound, they pulled me in for a mammogram. And that's when [the tumor] was picked up for the first time."

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After locating another small tumor on her sternum, and removing seven lymph nodes from her left side, doctors eventually diagnosed Julia with stage IV breast cancer. ("There is no stage five," she says, darkly.) Her first chemo session came less than a month later, and, after 15 more, Julia's eight-centimeter tumor had shrunk down to just two centimeters in diameter. The next step was surgery. Julia opted to remove only the tumorous breast—a unilateral mastectomy—preserving the other and using a prosthetic to fill out the space in her bra where her left breast used to be.

Though Julia is done with chemo now, and on to the last stage of her treatment, it's still painful for her to consider the fact that her breast cancer could have been diagnosed much earlier—potentially before it had spread through her lymphatic system. "They don't do mammograms on young people, because of the radiation, unless they really feel that they need to," says Julia. "Obviously, that part makes me very angry, because I let [the tumor] sit in my body for five to six months."

According a 2013 American Cancer Society statistic, fewer than five percent of all breast cancers diagnosed in the US occur in women under 40. With this figure in mind, some doctors may be unwilling to take seriously young women who fear an unusual lump might be breast cancer. There are a few reasons for this: For one, there are a host of benign breast conditions, such as fibroadenomas or clogged milk ducts, that may mimic the feel of tumor without in fact being cancerous. There is also a bias among less specialized practitioners in the medical community that a woman is simply "too young" for the disease.

If I had stopped when they said, 'Come back when you're 40, you're fine,' I wouldn't be here right now.

Julia feels it's important to make one point very clear. "I've had four or five people say to me, when I explain my situation, 'Oh, well, you're lucky you caught it early,'" she says. "I didn't catch it early: I'm just young... If I had stopped when they said, 'Come back when you're 40, you're fine,' I wouldn't be here right now."

Meghan Koziel, who was 25 when she was diagnosed with breast cancer, went through something remarkably similar. Like Julia, she went to her doctor after feeling a small lump in her breast, and she says the physician shrugged it off because of her age. "I didn't really present like a normal breast cancer patient," she tells me. "So my doctor just said, 'Follow up with me in a year, and if anything changes sooner, call us.'"

Within five months, Meghan says, she would feel a pain in her right breast any time she hugged someone. "The lump was definitely bigger, and more uncomfortable throughout the day."

After a mammogram and a biopsy, she was diagnosed with stage 2B breast cancer—PALB2 gene positive and estrogen receptor positive—the specifics of which played a key role in her treatment plan going forward. Getting the call from her doctor, Meghan says, was the single worst moment of her life. "I wanted to throw up... I felt like I was alone and falling down a bunny hole," she says. "It was a phone call I will never forget."

Meghan documented her hair growth throughout her recovery process. Photos courtesy of Meghan Koziel

Dr. Elisa Port, author of The New Generation Breast Cancer Book and the chief of breast surgery at Mount Sinai Medical Center, says she's deeply exasperated to hear that there are still young women, like Julia and Meghan, who are being sent home with a palpable lump and no biopsy to determine its nature. "There are no mitigating circumstances where you can blow off a 20-something who comes in with a lump but has no known family history of the disease," she says.

According to her, doctors should seriously examine, image, and biopsy any lump in a woman's breast, regardless of how young the patient is. "Let's be crystal clear: In the 20-year-old and 30-year-old age groups, a new lump will most likely not be a cancer, but most likely is not synonymous with certainly," she says. "I don't care who you are or what your family history is: You walk into a doctor's office with a new palpable lump, that lump is cancer until proven otherwise."

Receiving a cancer diagnosis at any age is a terrifying prospect; for young women in their mid-twenties, an age at which many people are finally figuring out what they want in life, there's something particularly world-shattering about it. "That's almost the most frustrating part—there is no explanation," says Julia. "I'm 25, I have no family history and I'm not genetically predisposed to anything. It's a mind game, not knowing why this happened."

Julia was given her diagnosis immediately after waking up from anesthesia, following an early surgery to remove two suspect lymph nodes, but she says she was so groggy that she can't remember what she was told. "What ended up happening was that my husband and my mom took me home after the surgery, and they had to tell me [again] when I was fully lucid," she recalls. It's news no mother should ever have to deliver to her own child. "I laid down on the couch and cried... I haven't cried about it since that day, actually. It's almost as if you have to get through the gritty, terrible, ugly thoughts to be able to reach the positive side."

Julia felt she had no choice but to move forward and focus on her treatment. "When my hair started to fall out, we shaved it. When my breast was cut off, I walked out of the hospital flat-chested on one side. That's just what my life is now."

Meghan, too, has gotten used to a drastically altered world, though she struggled at first. "I went from hardly going to my primary care physician, to having an oncologist, a surgical oncologist, a fertility specialist, a genetic counselor. It's a really big lifestyle change, and it's very overwhelming in the beginning," she recalls. "I had to go on short-term disability because I felt like crap during chemo treatments... It's horrible what chemo does to you." At one point, Meghan tells me, she went into anaphylactic shock after having an allergic reaction to the very chemotherapy drug that was saving her life.

"I forget how sick I was," she says. "Now I look back [at photos], and I'm like, Holy hell."

Fertility is another particularly pressing area of concern for women battling breast cancer at a young age: Both chemotherapy and hormone therapy may put breast cancer patients at risk for premature menopause. According to a 2004 survey, 73 percent of young breast cancer survivors had at least minor concerns about treatment-related infertility, and over a third had major concerns.

Both Julia and Meghan had been in the process of planning their weddings when they were diagnosed; today, both women are now in early menopause. Before beginning their multi-phase treatments, however, each opted to go through egg retrieval and in vitro fertilization so that they'd still be able to have biological children, which was important to them both. Julia says this was the only part of this experience that made her happy, "because no matter how you look at it, you made life."

Meghan made the best of her treatment process in another way: She documented her year with cancer on her personal blog and in frequent photo updates to her Instagram account, proudly publishing pictures of her head bald from chemo, and later with short "chemo curls" growing in. Other photos show her chest scarred, absent both nipples. "To me, to take a picture of my chest and show my scars—I don't see that as inappropriate or sexual," she says. "I see it as educational and as a motivation to other girls in my situation."

"When I was diagnosed... it was all new. I was scared and lost and googled things, which is, like, the worst thing you can do, because the main things that pop up are the worst-case scenarios," she continues. "I hope my blog helps people get through the journey with a little more insight than I had a year ago."

Meghan's blog, as it happens, is one of the first Julia found after her diagnosis. "Good for you!" she remembers thinking. "People don't want to see a 25-year-old go through all of that, but she just laid it out there, and I think that is so brave."

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Earlier this month, Julia entered the third and final phase of her treatment: radiation. On July 21, Meghan, now 27, was pronounced cancer-free; this week was the one-year anniversary of her diagnosis. Relentlessly optimistic, she jokes that she's excited about breast reconstruction surgery. "I say, the bigger, the better!" she jokes. "I'm excited for a free boob job—it's the only perk of having cancer. That, and not getting your period."

More serious, she adds, "You have to find something exciting when you have cancer."