Disbelief is the sentiment echoed over and over when young women are asked about their initial reaction to a breast cancer diagnosis. Though virtually no woman expects to get the disease, the sense of shock seems more pronounced in women less advanced in years.

At first glance, it would appear their sense of shock is justified. Only about 5% of the female breast cancer cases diagnosed in the United States last year involved women under the age of 40.

But this comparatively small percentage has resulted in a historic lack of attention to the threat breast cancer poses to that age group. It has also lulled younger women into believing that there is no chance they can get the disease.

As a result, many younger women do not perform breast self-examinations and don’t insist that their doctors perform regular mammograms. Some also make poor choices with regard to diet and exercise, believing themselves to be protected by their youth, experts say.

This neglect can be deadly.

Though young women are less likely to contract the disease, breast cancer is the leading cause of cancer deaths for women between the ages of 20-39. The late stage at which they are often diagnosed with the disease also means that young women have a disproportionately high mortality rate from breast cancer.

“When you are diagnosed at a young age, you have a longer time to think about dying of breast cancer,” said Diane Balma. “It takes away sense of youthful innocence and makes you feel really vulnerable at a young age.”

Younger women often exhibit a particularly aggressive form of breast cancer, and are not as responsive to certain longstanding breast cancer drugs, said Dr. Cheryl Perkins, senior medical advisor for the Susan G. Komen Foundation, a leading national breast cancer support group.

“A lot of younger women are estrogen receptor negative and the different interplay of hormones in their bodies makes them not as receptive to certain treatments,” said Perkins, citing the longtime drug Tamoxifin, as one treatment that doesn’t seem to be as effective in younger women.

To complicate matters further, younger women’s breasts are often denser, making it harder to discover a lump even for women who perform regular self-exams – and sometimes even for medical experts to discover.

“My mammogram didn’t even turn up the fact that I had breast cancer,” said Diane Balma. “There was no sense of urgency because I was a young woman. Even the surgeon who initially examined me said he didn’t think it was anything.”

Kimberly Higginbotham’s surgeon told her he thought the growth she found in her breast was just a cyst. That “cyst” ended up being a malignant growth “about the size of an egg,” Higginbotham said with horror.

In addition to the medical complications and frightening lack of awareness associated with breast cancer in younger women, there are also some specific social and familial issues attached to this age group.

“A lot of older women who get breast cancer already have a husband, but when a younger woman gets it and she has a boyfriend she begins to wonder, ‘is he going to stay with me?’” said Higginbotham.

Kimberly’s husband Anthony, an athletic director, said that he didn’t think for one second of leaving his then girlfriend. “The men who do that don’t really love their wives to begin with,” he said. “How can you leave somebody when that person needs you more than any other time in her life.”

Kimberly’s experience with breast cancer has actually brought the couple closer, they both said. When Kim began to lose her hair from chemotherapy, Anthony shaved his own head.

“All the guys at the barber shop were making fun of me,” he recalled. “But it was worth it when I saw Kim. She bursted out crying and threw her arms around me.”

Even though Rhona Baniqued has a boyfriend now, she is relieved she didn’t when first diagnosed with breast cancer. “I lost all my hair and was really concerned how my clothes would fit me after my breast reconstruction,” she said.

Breast Cancer suvivor Kimberly Higginbotham and husband Anthony on their wedding day.

Diane Balma calls the issue of her breast cancer and mastectomy “the big elephant in the room,” when it comes to dating. “I never know if or when to bring it up,” she said. “It has become easier for me to date people in the
cancer community, because they understand.”

The ability to have children after a breast cancer diagnosis and particularly several rounds of chemotherapy is very much an issue for young women with the disease.

Young breast cancer survivors are at risk of an early induced menopause as a result of chemotherapy and other treatments, and most women have to wait upwards of five years after ridding their bodies of cancer before even trying to have children.

Even in the best case scenarios, breast cancer survivors considering having children have to deal with the risk that their offspring – particularly if it is a girl – will be more vulnerable to the disease. They also have to wonder if they will be around to see the child grow up.

“When you are diagnosed at a young age, you have a longer time to think about dying of breast cancer,” said Balma. “It takes away sense of youthful innocence and makes you feel really vulnerable at a young age.”

Support groups like Komen have begun outreach programs to educate younger women on their risk for breast cancer and to encourage them to perform self-examinations and get regular mammograms.

Women should start monthly breast exams at the age of 20 and should have a mammogram every three years until they are 40 and every year after that.

“We need to make young women aware that they can get breast cancer,” said Balma. “And we need to get them to ask the right questions of their doctor.”