Donna was diagnosed with stage 0 ductal carcinoma in situ (DCIS), the most common type of non-invasive breast cancer, according to BreastCancer.org. Only about 40 to 50 percent of DCIS cases progress to invasive breast cancer, research shows.
“I had a wide excision in January 2010, and a week later, I went in for the results and the nurse went into this rant about my treatment options,” Donna tells WomensHealthMag.com. Doctors categorize DCIS cases by grade, with low-grade cases being the least likely to recur after an excision, and high-grade cases being the most likely to come back without additional treatment (like radiation or a mastectomy), according to the American Cancer Society. “That’s kind of where I went numb. She told me it was an intermediate grade and that the treatment was a mastectomy or a partial mastectomy, plus seven weeks of daily radiation.”
Donna’s next step was to see the recommended litany of specialists: a medical oncologist, a radiation oncologist, and a nurse navigator. “I was completely blindsided,” she says. “You’re just literally in shock. And women are being given this diagnosis, being scared out of their minds, and are told to schedule all these appointments and make these decisions overnight.”
Donna went home that night and sent a good news/bad news email to her friends and family.
“I said, ‘The good news is that they found this DCIS,’” she says. “I explained what it is and that it’s nothing to worry about, but the bad news is this is the treatment. I said it was a partial mastectomy and seven weeks of radiation. Something in me told me not to do that.”
One of Donna’s friends—a holistic health practitioner—reached out right away and told her, “This is nothing.”
“She said I shouldn’t do any of the invasive treatments,” says Donna. Her friend suggested Donna try a “wait and see” approach, opting for an MRI a month later to monitor the cancer, instead. “She kind of settled me from the get go,” says Donna, who notes that her friend also recommended adopting an organic eating plan. The MRI results came back showing nothing of concern. Still, Donna’s doctors encouraged her to get a partial mastectomy and do the radiation. In fact, she says they bullied her.
“You’re backed into a corner because of unknowns,” she says. “My doctor said, ‘Don’t be stupid. Just do radiation at least.’ They called me stupid. But why would anybody have surgery if there’s nothing to be seen? I know why that’s happening, that rush to get it out. It’s just that knee-jerk reaction when we hear the word cancer.”
That seems to be the M.O. for many oncologists. A recent study in the journal Evidence Reports/Technology Assessment found that between 2007 and 2011, even with the very tiny 3 percent mortality statistic, 88 percent of women diagnosed with DCIS underwent a lumpectomy or mastectomy.
Donna eventually did find doctors who agreed with her—ones who said, “We shouldn’t call it cancer.”
“There’s even something called the Van Nuys prognostic index [VNPI],” says Donna, explaining that it calculates a woman’s risk of recurrence without radiation. The VNPI assigns women with DCIS a score based on tumor size, margin width, grade, age, and comedo necrosis (a type of DCIS).
Another step in the right direction, she says, is knocking mammography off its pedestal. A 2014 Swiss study referenced in the New England Journal of Medicine found that 22 percent of women screened will be exposed to false positives. (Check out these four factors that could cause false positives on your cancer screenings.) Even here in the United States, the U.S. Preventive Services Task Force adjusted its starting age for mammograms from 40 to 50.
“Everyone has the association that cancer is a death sentence,” says Donna. “You go to that place. You wonder, ‘Is this my silent killer?’ Doctors are treating DCIS the same way they treat someone with invasive breast cancer.”
Luckily, Donna’s been in good health since her initial diagnosis; her cancer has not spread. She continues to monitor her DCIS, undergoing annual dedicated breast MRIs over the last four years and automated whole-breast ultrasounds (AWBUS), which were created for women like her with dense breast tissue. “I know my own body, and I believe strongly that intuition is also very powerful,” she says.
Donna hopes her story—and new research in the field—will prevent other women like her from assuming the worst when they see the word “carcinoma” in their results.
For more on whether early detection is really saving lives, the unlikely things can cause you to get a false positive diagnosis, and more, pick up the October issue of Women’s Health, on newsstands now.