A biopsy revealed that Johnson had invasive ductal carcinoma, which means that malignant cells had formed in a milk duct and then spread. Her tumor measured 3.5 centimeters (about 1.4 inches), she says. Once she had gotten over the initial shock of her diagnosis and begun treatment, Johnson met and joined forces with three other young women fighting breast cancer: Patti Balwanz, Jana Peters and Kim Carlos. They formed their own private support group, meeting regularly for lunch at the Nordstrom’s store near their Kansas City homes. The friendship inspired their moving new book, “Nordie’s at Noon,” published this month by Da Capo Press. “We felt such comfort in being able to talk to each other and share our stories,” says Carlos. “We felt there weren’t enough resources out there for young women.”
Breast cancer is generally considered an older women’s disease; the median age of diagnosis is 63. But younger women are not immune. In fact, according to the National Cancer Institute, one in 229 women in their 30s will be diagnosed with a malignancy in their breasts. Young women also have special concerns that don’t affect older breast cancer patients. If they haven’t had children, they worry that chemotherapy or radiation will send them into early menopause. If they’re single and dating, they may have to contend with feeling less attractive after surgery. Breast cancer in younger women tends to be more aggressive, which makes early diagnosis all the more critical. But getting that early diagnosis is often difficult. In general, women with no special risk factors for breast cancer don’t start getting mammograms, the most widely used screening, until they’re in their 40s. (Before then, younger women’s denser breast tissue makes mammograms less reliable.)
Even if women do notice something suspicious during a self-exam, doctors don’t always take their complaints seriously. “The doctor will say, ‘Oh, let’s just watch that lump for three or six months or a year and see what happens’,” says Carlos. That often means that young women are diagnosed at a later stage and face a grimmer prognosis. In fact, breast cancer is the leading cause of cancer deaths among women aged 15 to 54, according to the National Cancer Institute. However, if the tumor is detected early enough, the odds are good: 83 percent of women under 45 whose cancers are found early will survive for at least five years.
Without mammograms, what’s the best tool for spotting signs of trouble? All four of the Nordie’s authors found lumps themselves. But among breast cancer groups, there is disagreement over whether self-exams should be included in screening recommendations; studies have not proven that the exams reduce deaths. However, no one disputes that self-exams help you become aware of the geography of your breast so you can detect any abnormalities early on. “The most important thing is to understand what kind of lumps or bumps are normal for you and if something is different, you need to consult a doctor,” says Randi Rosenberg, a founding member and former president of the Young Survival Coalition, a network of young breast cancer survivors ( www.youngsurvival.org ). (For tips on how to check your breasts, go to the Komen Foundation site, www.komen.org , and click on the breast-self exam link.)
While lumps are the most commonly known sign of trouble, there are other things to look for—especially in young women, says Rosenberg. These include: swelling in a part of your breast; a rash, irritation or dimpling of the breast skin; a retracted nipple or discharge from the nipple; redness or scaliness on any part of the breast, and unusual pain. If you are concerned about a change in your breasts and your doctor says nothing’s wrong after a clinical exam, Rosenberg advises young women to insist on a second test—an ultrasound or even a biopsy. “You should err on the side of caution,” she says.
The stories in “Nordie’s at Noon” reflect both the triumphs and tragedies of the more than 250,000 American women under 40 who are currently living with breast cancer. The day after Johnson finished her last chemotherapy treatment in February of 2000, she gave birth to her son Parker. Two years later, she became pregnant with her daughter, Emma, and has been cancer free for seven years. Carlos is also healthy; her son, Brandon, is in first grade. But the other two authors haven’t been as lucky. Balwanz died in 2003 at the age of 29. Peters’ cancer was stable for many years but in the past year, it has spread. “There’s no rhyme or reason to any of this,” Johnson says. “Patti and Jana were both Stage 1 with their cancers and I’ve survived Stage 2. Why do Kim and I survive and they had to deal with so much?”
After Balwanz died, her family collected her journals so the women could finish their book. They hope to inspire other young women to become advocates for their own medical care. “Do whatever it takes to feel good about your health and build a team with your medical doctors,” says Carlos. “At the end of the day, no one’s looking out for you but you.” That’s a message that should resonate with women of all ages.
