Paging Dr. Internet, we need a diagnosis. In this series, Mashable examines the online world's influence on our health and prescribes new ways forward.
I realized I might have gotten ahead of myself when I followed #BaldIsBeautiful on Instagram. Later, comparing the cost and efficacy of chemo cold caps — at 2 a.m. on my iPhone — I knewI had.
Earlier this October, I faced a breast cancer scare at the age of 26. I suppose it was oddly fitting, what with it being National Breast Cancer Awareness Monthand me having just been kicked off my parent’s health insurance. Yet in the fog of fear, I could think nothing of the ironic timeliness. After some strange skin changes on my right boob I thought my doctor would say were nothing turned out to be "worth taking seriously," the panic set in. In an instant, my days became a whirlwind of WebMD’ing and Mayo Clinic research. My nights devolved into fitful Reddit scouring and tearful phone calls to my mom. Everything, and I mean everything, suddenly felt like a mess.
Almost four weeks later, I’m relieved to say I’m OK. Some great doctors, plus a handful of appointments and tests, revealed that the bizarre coloring and dimples I'd seen weren’t caused by cancer — just a weird skin thing. My immediate future, I’m told, holds some precautionary imaging and a few follow-ups with a dermatologist, but none of the life-saving treatments I’d feared needing.
There are some things I wish someone had told me when I was where you are now.
Still, the resultant anxiety left me mentally, emotionally, and physically wrung out for days, even after I got the news that I was OK. If you've ever had a cancer scare (chances are high anyone reading this eventually will), you know the combination of stress and fear can be deeply traumatic and tiring. But if you’re experiencing one right now, then you might be struggling to gain perspective at all.
Ijustwent through the same thing, so please trust me when I say: You are not alone. What you are experiencing is scary, and whatever reaction you’re having is OK. That said, there are some things I wish someone had told me when I was where you are now.
Marie Zoutomou-Quintanilla, a businesswoman who immigrated to the United States from West Africa as a teenager, remembers her pre-diagnosis anxiety all too well.
"That was the worst thing ever," the breast cancer survivor recalls of first researching the disease. "I was just trying to find answers to questions like 'What is breast cancer?' and 'How do you fight it?' Because I really didn’t know."
Diagnosed at 31, Zoutomou-Quintanilla describes a tremendously difficult journey to understanding her illness. For one thing, her age led to incorrect assumptions about her risk — namely that she was just too young to have it — and multiple misdiagnoses followed. Doctors told her the lump she was feeling was just a cyst, but as it grew, questions lingered. Turning to the internet didn’t help; it often offered opinion when Zoutomou-Quintanilla needed science-backed fact.
“I was just trying to find answers to questions like ‘What is breast cancer?’ and ‘How do you fight it?’ Because I really didn’t know.”
"I went from living my dream to living a nightmare," she says of the more than two years it ultimately took to begin treatment — two years that divided Zoutomou-Quintanilla's attention between building her ideal career and possibly, maybe preparing for the fight of her life.
This year in the United States, 281,550 new cases of invasive breast cancer are expected to be diagnosed in women. An additional 2,650 are anticipated in men. (These projections from the American Cancer Societyare not currently available for nonbinary or transgender populations.) Breast cancer is now the most commonly diagnosed cancer globally, per the World Health Organization, and decade over decade, survival rates have generally improved(though that's complicated by all sorts of population factors.)
Still, Lillie Shockney, a world-renowned oncology nurse and member of the National Breast Cancer Foundation's Medical Advisory Council, says breast cancer remains "the most feared cancer among women." That fear, she says, is fueled in part by stories of the older, more radical treatments needed to save lives before modern medical advancements. But the possibility of death contributes to that fear just as much if not more than any arcane "horror stories."
Lillie Shockney in action for the NBCFCredit: courtesy of nbCF“[Many pre-diagnosis patients] only know people who have died,” Shockney says, citing the age-old tendency of humans to share the most extreme version of every story. "If you're a survivor, please tell other people for God’s sake. Don’t keep it a secret, because then we only hear about the bad things."
Shockney says being afraid is understandable, but that many of her patients are surprised at just how good their prognoses are. When breast cancer is caught early, it generally responds well to treatment.
"We are living in a totally different time today in how we manage this disease and how early we can find it," says Shockney, who is also a breast cancer survivor. "I really do believe we will eventually be treating this as a chronic [and not fatal] disease for everyone."
Even in cases when it's detected later, Shockney reassures there's no reason to panic: "If you assume you're in the group that's going to be told you have breast cancer, and then when it's all said and done, you'll only scare yourself."
"Everybody's journey is different.”
When looking for information about breast cancer, stick with trusted healthcare sources like the Centers for Disease Control and Prevention, World Health Organization, Breastcancer.org, American Cancer Society, or the National Breast Cancer Foundation. Zoutomou-Quintanilla says it wasn’t until she started volunteering for the American Cancer Society herself that she fully appreciated how much misinformation and fear-mongering content is out there.
"People may be giving their opinions on how they personally [faced] cancer," she warns of what’s available online. "But everybody's journey is different. So [your resources] should be fact-based."
Of course, there's a difference between not stressing yourself out with unverifiable assumptions or anecdotes and failing to arm yourself with important knowledge. Dr. Marisa Weiss, who is director of both breast radiation oncology and breast health outreach at Lankenau Medical Center in Philadelphia, PA, founded Breastcancer.org as a resource and community for patients, with education as a key focus.
"We know breast cancer is the most common cancer for women," Weiss offers. "So it makes sense for you to make the extra effort to do what you need to do to give yourself the benefit of early detection."
An important first step, Weiss says, is identifying your personal risk factors and discussing with a healthcare professional how to minimize them. Depending on your age, your doctor may also recommend annual mammograms (this is typically recommended for patients 45 or older) or regular self-exams. Per Weiss and Breastcancer.org, citing the American Cancer Society, symptoms of breast cancer to look for include:
swelling of all or part of the breast
skin irritation or dimpling
breast pain
nipple pain or the nipple turning inward
redness, scaliness, or thickening of the nipple or breast skin
a nipple discharge other than breast milk
a lump in the underarm area
Weiss emphasizes that all of these symptoms can, and often are, indicative of something far less harmful than cancer — "but you don't want to guess about something important." Simply put, no amount of googling and rationalizing will do you as much good as a trip to the doctor's office.
"Make the extra effort to do what you need to do to give yourself the benefit of early detection.”
"Even if your risk is 1 percent, if you're in that 1 percent, it's 100 percent for you," echoes Shockney.
If you’re hesitant to go to the doctor, Weiss recommends seriously considering why that might be, then doing your best to adjust your priorities so you can seek care. It's important to remember that while certain behaviors can increase your likelihood for breast cancer, nothing you do can magically cause cancer cells to form. Nipple piercings, weight gain, sex: None of it "causes" cancer. This isn't your fault, and you deserve to be treated by professionals.
Similarly, if you're embarrassed or ashamed that you've let a concerning symptom go on for some time, Weiss says, "You never need an excuse or to be defensive about why you've let something slide for a while. Put that aside. Call your doctor’s office, say, 'There's something I need to get checked out. Can you see me as soon as possible?' No apologies."
Dr. Marisa Weiss.Credit: courtesy of Breastcancer.orgFor those concerned about affording care, Weiss notes, "Most hospitals do have resources that they can tap into to help you get the care that you need. So do not let the absence of insurance be a reason why you don't seek medical help."
When calling your doctor's office, Weiss recommends asking early about the availability of social workers or patient navigators on staff who can help you find coverage.
Picking who to tell about a cancer scare is a very personal, and in my experience, profoundly overwhelming decision.
On the one hand, you might not want to tell anyone, for fear that you'll worry your loved ones or that their knowing would somehow make your circumstance more "real." On the other hand, you might feel compelled to share openly and avoid feeling so alone in your anxiety. (I went through all of these feelings in a vicious loop before settling on telling a limited number of friends, family members, and coworkers.)
Whatever you decide, every expert I spoke to recommended putting serious thought into who you tell and why. You have no cause to be ashamed of your circumstance, even if it turns out to be a false alarm. But selecting people who can and will show up for you the way you deserve will be important to your successful coping.
Take comfort knowing you won't be the first or last patient to sit in a waiting room feeling nervous.Credit: Getty Images"Once you disclose information, generally speaking, you can assume it’s being shared," Weiss cautions. "So you really need to trust the person you’re sharing it with and make it explicit that you want to maintain your privacy."
"You really need to trust the person you’re sharing it with and make it explicit that you want to maintain your privacy.”
If you choose to tell your employer, an HR representative, or other community leader, be it because you need time off to see a doctor or because the stress of your breast concern is impacting your work, Weiss recommends politely reminding them to be professional. She suggests saying something like "Thank you for keeping this confidential and respecting my privacy" as a reminder to them of the boundaries you are entitled to uphold as an individual.
For additional emotional and psychological support, people experiencing cancer scares may also want to seek psychiatric and/or therapeutic help. You can ask for a referral through your primary care physician, or try online counseling services like BetterHelp or TalkSpace.
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This is an especially important thing to remember in the wake of the pandemic: Shockney has noticed anxiety surrounding medical matters seems to have increased considerably since March 2020. Our propensity for jumping to conclusions, and pessimistic conclusions at that, is higher right now than it might normally be as a result.
"Don't let the pandemic be a reason why you don't go to the doctor," Weiss adds. "Hospitals are a relatively safe place [when it comes to avoiding virus transmission]."
By the time she was diagnosed, Zoutomou-Quintanilla was facing stage 3 breast cancer and a lump she says was the size of a lemon. The cancer responded well to treatment, but doctors told Zoutomou-Quintanilla this meant she would probably be unable to conceive children. The news seemed to dash Zoutomou-Quintanilla’s lifelong dream of motherhood entirely.
"This is not going to last forever."
Ever the optimist, however, the then-thirty-something went on dates while battling cancer. "It’s a great way to know if someone is serious," she jokes.
More than a decade later, she's 43 with a husband and two adorable daughters. Plus, she's turning her moving experience with breast cancer into a streaming talk show.
Marie Zoutomou-Quintanilla and her daughters.Credit: courtesy of Marie Zoutomou-Quintanilla"Just know that this is not going to last forever," Zoutomou-Quintanilla says.
Another survivor, Weiss, perhaps sums it up best: "Everyone has direct or indirect experience with [breast cancer]. So really no one goes through it alone."
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