As I pack for my final round of chemotherapy, I wonder how in the world I ended up here. I had always thought that turning 30 would be a milestone, bringing a host of pivotal life changes. And, in a way, I guess it has.
Since hitting 30 late last year, I was diagnosed with breast cancer, had a double mastectomy and breast reconstruction, had a few eggs surgically removed to protect them from the poisons used to treat cancer, had a few dozen lymph nodes taken out and, of course, eight rounds of my chemo cocktail.
I still strive to feel like any other woman, even though my hair has yet to grow back. My best friend tells me on a daily basis that I saved my own life.
It all started in late January. I had scratched my chest while furiously rubbing an itch from an irritating wool sweater. And while I was applying ointment on the scratch, I thought, “Hey, why not do a breast self- exam.” That’s when I discovered a lump the size of the tip of an eraser in my left breast.
When I went for a sonogram a few days later, I told the technician about the lump and how, while lying down, it seemed to disappear. But when I sat up, the lump would pop out, as if it wanted to raise its hand and ask a question.
Everyone said that I was an unlikely candidate for breast cancer. I was only 30 years old and there was no history of the disease in my family.
In fact, many clinicians are no longer teaching women how to do breast self-exams, and the National Cancer Institute has cited studies showing no benefit from mammogram screening for women younger than 40 because of breast density and the high number of false-negative results.
It was only after my cancer surgery and treatment that I began to explore these recommendations and other commonly held beliefs about the disease.
I learned that cancer in younger women is not that uncommon. Young women account for roughly one out of every 20 new cases in the nation. According to the American Cancer Society, about 230,000 women will be diagnosed with breast cancer this year. The Young Survival Coalition, of which I am a new member, says that about 10,000 of those newly diagnosed — slightly less than five out of every 100 cases — will involve women younger than 40.
I also discovered that family history does not always play a role. Eighty-five percent of women diagnosed with breast cancer do not have a family history of the disease, according to the American Cancer Society.
And then there is the assumption that younger women need not perform breast self-exams.
A 2009 review of breast cancer screening by the U.S. Preventive Services Task Force, an arm of the U.S. Department of Health and Human Services that periodically reviews the effectiveness of medical tests and treatments, recommended against teaching self-examinations because, it says, the exams do not reduce breast cancer mortality.
I spoke with Susan Love, a surgeon who specializes in breast cancer and is the author of “Dr. Susan Love’s Breast Book.” She believes the recommendation was largely misunderstood because the control group in the trial, which did not have routine mammography screening, found their own breast cancers.
During breast self-examinations, Love says, we can “feel from the inside in and the inside out” — something that’s missing from a clinical breast exam.Love believes the key to unlocking the mysteries of what causes the disease may lie in younger women. While researchers may know some of the conditions that cause breast cancer in older women — hormone replacement, having your first pregnancy late in life, exercise, diet — they also need to find out the causes in young women.
“Could there be a virus causing breast cancer? Or a bacteria? We haven’t looked,” she says. Pregnancy, she adds, is the only known condition that may place young women at greater risk for the disease.
Love says that while a woman is pregnant, and for the next 10 years, there is a higher risk for breast cancer because a lot of changes are happening in the breast. “The breast goes from being a decorative item to a milk factory,” she says. However the cancer risk tapers off and having children before age 30 can actually lower a woman’s risk for breast cancer.
I have never been pregnant but I did freeze some eggs before starting chemotherapy in the hope that I one day can benefit from the protective properties researchers say come from being pregnant.
Because my tumor fed on estrogen, I will be on a drug for five years that will block the hormone. So my eggs will have to patiently wait in a cryogenic lab in Colorado. I’m secretly hoping they’ll take advantage of their time in the Rockies and learn how to become amazing skiers.
And I also hope that in the years to come, more young women will begin examining their breasts and insisting on mammograms so that they can benefit from early detection. “Get to know your own breasts,” Love says. “If you feel something, tell your doctor. And the big message for women is not to take ‘No’ for an answer. There’s no excuse for saying, ‘The doctor didn’t believe me so I went home.’”
Originally published in Inside Jersey, The Monthly Magazine of The Star-Ledger, September 2011