Better Health & Living: Article: When Breast Cancer Comes Early

Issue: July 2008

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When Breast Cancer Comes Early

A survival guide for women under 40

by Julie A. Evans

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In 1996, Lanita Moss, then 32, was diagnosed with a rare form of breast cancer called Paget’s disease. Despite a strong family history of early-onset breast cancer, Moss believed that the open, red sore she had was simply irritation caused by her running bra.

After almost a year and at the urging of her mother, husband, and gynecologist, Moss finally submitted to a biopsy and got her diagnosis. She stunned her doctor when she asked for a controversial prophylactic double mastectomy. Moss says she wasn’t taking any chances.

“I told them, ‘Take two; they’re small!’ I refused to go through this again,” she recalls. “I’m an 11.5-year survivor, and I’ve never regretted my decision.”

Nor has she ever regretted starting an organization called Young Survival Coalition (YSC). After her diagnosis, Moss was dismayed by the lack of solid research, literature, and support for younger women diagnosed with the disease. She and two other young breast cancer survivors started YSC as a small local organization in New York. It has since grown to a national nonprofit with a website (www.youngsurvival.org) and a national conference. “The beauty of YSC is that you learn that there are many other women out there just like you,” says Moss. “It helps the healing begin.”

Age Differences

Breast cancer is usually not high on the worry list for young women, yet it’s the leading cause of cancer death in women under 35; some 14,000 women will be diagnosed this year. Experts aren’t sure why younger women are more likely to die of breast cancer than older women, but they do know that the disease tends to be more aggressive in premenopausal women. There’s also no evidence that routine mammograms—not usually recommended until women are 40—save lives. Even if young women got mammograms annually, their dense breast tissue can make detecting cancer difficult. Consequently, younger women tend to be diagnosed when their cancer is at an advanced stage, which contributes to their lower survival rates.

While younger women with breast cancer struggle with the same concerns as others—fear of dying, loss of positive body image, sexual problems—they have some age-specific concerns: Will the treatment leave them infertile? Who will care for their young children when they’re fatigued from chemo? How do they bring up the “C word” on dates?

Lifesaving cancer treatments can be devastating: They can halt ovulation; trigger early menopause; and cause plummeting libido, vaginal dryness, and painful intercourse that can cause a woman’s sex life to vaporize.

Breast cancer is usually not high on the worry list for young women, yet it’s the leading cause of cancer death in women under 35.

“Lots of young women feel sad coping with these issues when they should be thinking about building a relationship or a family,” says Jeanne Carter, PhD, sexual health counselor for the Sexual Health Program at Memorial Sloan-Kettering Cancer Center in New York City.

If you’ve been diagnosed with breast cancer, here’s what you need to know.

Protect your intimacy

Many oncology practices and hospitals offer counseling and support to help women and their partners through the physical and emotional changes wrought by cancer treatments. “When young women finally make it to me, they’re relieved that someone understands because they’ve felt so alone,” says Dr. Carter.

But not all doctors address sexual issues or offer treatment, adds Lisa Martinez, executive director of the Women’s Sexual Health Foundation. “If your doc’s uncomfortable talking about your sex life, don’t give up—find someone else,” says Martinez, who has had breast cancer. “Get answers before treatment starts.”

Preserve your fertility

If a woman is single or just married, her plans for a family may be threatened by her cancer treatment. Chemotherapy can kill healthy cells needed for egg production. Complicating matters, most women are advised to wait a few years until the risk of cancer recurrence subsides before attempting pregnancy. By then, depending on her age, a woman may be less fertile, says Ann H. Partridge, MPH, MD, a medical oncologist at Dana-Farber Cancer Institute in Boston.

If you want to have a family, consider harvesting eggs from your ovaries and freezing them before chemo begins, says Dr. Partridge. Talk to your oncologist first: To increase egg production for removal, a woman must take hormones that may fuel breast cancer growth if a tumor is estrogen positive. New studies are testing the use of the breast cancer treatment drugs tamoxifen (Nolvadex) and letrozole (Femara) to stimulate egg production without exposing the breasts to estrogen. While they appear safer, Dr. Partridge says, “With breast cancer, it takes thousands of patients and many years to see whether or not hormones given pre-chemo would improve or worsen how a person will do over the long haul.”

If you have early-stage breast cancer, it’s possible that you can opt out of chemo, but that, too, is a decision best made only with your doctor’s advice.

Prepare your kids

It’s best to be as open and honest as you can with your young children, says Roz Kleban, a social worker for Memorial Sloan-Kettering’s Breast Center. “Tell them, ‘I might be sick for a few days’ and ‘I might be tired.‘“ If you don’t tell kids the truth, it’s hard to explain why you’re not well. Plus, they know something bad is happening, and they’ll have no way of relieving their anxiety if they don’t know what’s wrong. Kids are concerned that their lives stay constant, so if there aren’t a lot of changes—if someone’s there to take them to school and to whatever extracurricular activities they’re involved in—they should do well, Kleban says. Don’t be afraid to ask friends and family to help with carpools, after-school activities, meals, and anything else you need.

Julie Evans is a freelance writer in Cleveland Heights, Ohio.

Breast Cancer

Advice for Young Women

Leigh Hurst has a message for you: She wants you to feel your boobies. And to get you to do it, Hurst has created a bodacious line of T-shirts emblazoned with the slyly sexy message “Feel Your Boobies” as a wake-up call for women who are too young to get routine mammograms but not too young to get breast cancer.

It’s a strongly personal mission for Hurst, 37, who was diagnosed with stage I breast cancer in 2004, two years after encountering a small, hard lump in her breast that felt to her like “a peanut in a bowl of oatmeal.”

But her doctors couldn’t feel the lump, and she suspects it was that and her age that led them to dismiss her concerns. “I thought maybe I was being a hypochondriac,” she says. Finally, when a nurse practitioner ordered Hurst to get a mammogram so she could stop worrying, her worst fears were realized. She embarked on a treatment plan that included a lumpectomy, chemotherapy, and radiation.

Hurst, a former business consultant from Middleton, Pennsylvania, founded her company (www.feelyourboobies.com) after the T-shirt she designed for friends attracted national attention. Her message is simple: Read the slogan, giggle, and then do a quick self-check, no matter what your age. If you know how your breasts usually feel, you’ll be likelier to spot small changes, she says.