Young women with breast cancer have unique concerns

Sara Gonzales, 32, knew it would only be a matter of time before she got breast cancer. She just didn’t want it to interrupt her plans to have a family.

When Kalee Beal discovered a small lump in her breast, the then-22-year-old college student figured she was too young to get breast cancer.

Both Wichita women discovered that breast cancer strikes indiscriminately and on its own time, and can create major setbacks in a young woman’s life.

It can leave you heartbroken and angry about your plans to have kids.

It can leave you crying and home alone while your friends are partying.

It can keep you from picking up your child to express joy or comfort.

It can mean you have a tougher time hunting for a job, not willing to ask a new employer for time off for fatiguing treatments.

It can cause you to question current and future relationships with a significant other.

It can bring angst and even pain during sex.

Less likely to occur

Beal was partially right about one thing. Young women typically aren’t diagnosed with breast cancer, which is the second-leading cause of cancer deaths in women in general, behind lung cancer.

Breast cancer is most commonly diagnosed in middle-aged and older women ages 55 to 64, according to National Cancer Institute figures. According to the Susan G. Komen Foundation, which sponsors the annual Race for the Cure, less than 5 percent of all U.S. breast cancer cases are in women younger than 40. The American Cancer Society and some other medical groups recommend annual mammograms starting at age 40.

It can be hard to diagnose young women, said Therese Cusick, a board-certified breast surgeon with Breast Care Specialists.

Breast tissue is more dense in younger women, making it hard to get good readings from mammograms, noted Jackie Osland, who is also a board-certified surgeon with Breast Care Specialists.

But with the increase of genetic testing, young women who test positive for gene mutations causing the disease can be put on a more diligent monitoring plan, Cusick said.

But just because a young woman is less likely than an older woman to get breast cancer, that doesn’t mean one should dismiss finding a lump, doctors say.

“Young women should do a breast exam once a month, and if you notice a lump, you need to see a doctor immediately,” Cusick said.

Beal admits she didn’t do that. For months, she ignored the lump she found in her left breast, thinking it was probably caused by something “hormonal.”

After a girlfriend convinced her to see a doctor when the area became sore and tender, Beal was diagnosed with a form of breast cancer that is particularly aggressive. Beal’s HER2-growth protein that normally helps breast cells grow, divide and repair had gone out of control and was making too many copies of itself. Beal’s cancer was in stage 3C, meaning it had spread to several lymph nodes.

“It really shut down the partying,” said Beal, who had been making the most of turning 21. She’s now 23.

It also interrupted her last semester at Wichita State, where she had a full-ride scholarship as the 2009 runner-up for the university’s premier academic scholarship. She had planned on retaking some classes to bring up her grade point average and finishing her last six required credits. Because of her illness, she got an exemption for three of those credits and took the remaining class online. She couldn’t attend her December graduation ceremony because she was too ill to be around large groups.

She cried a lot and started being prone to panic and anxiety attacks, worrying about her friendships and her risks.

“I feel like I missed out on a lot,” said Beal, who will soon finish 52 weeks of intravenous herceptin, a medicine that specifically blocks HER2 cancer cells from growing and dividing.

“Some of it was stupid, little things, like not being able to go to someone’s birthday party or not getting to go to the Fake St. Patty’s Day in Manhattan.” The latter has the reputation as one of the nation’s top 10 college parties.

She told her boyfriend it would be OK if he dumped her. “I gave him an out since 21-year-old guys don’t want to have to deal with this,” she said.

Instead, he built a home theater in their basement so her friends could hang out with her at home. He went with her to nearly all her appointments. She stopped being embarrassed when doctors asked her in front of him how many bowel movements she had.

She didn’t always care for the change in “girlfriend drama” that often occurs in college-aged friendships. She lost some friends because she couldn’t hang out with them like she used to.

During treatment, if she told one friend she was down and not another, she’d be questioned why. She realized she was the “novel” friend, the one with cancer, and her friends sometimes jockeyed to go with her for the hours-long treatment of several months of chemotherapy.

Knew it was coming

Gonzales, on the other hand, was prepared to get breast cancer. Her mother had been diagnosed with it at age 36, when Gonzales was only 5. Her grandmother had had it, too.

“I just knew I would get breast cancer as a young woman. I’ve known cancer my whole life,” said Gonzales, the 32-year-old mother of twin 2-year-old girls. “It’s why I went into” oncology nursing.

When she was 26, Gonzales tested positive for the BRCA gene mutation, meaning she was at higher risk for breast cancer. The mutations of BRCA1 and BRCA2, proteins that help repair DNA, account for about 5 to 10 percent of all breast cancers, according to the National Cancer Institute.

Many women opt to be proactive when they test positive and have their healthy breasts removed and even undergo hysterectomies to lower their risk for breast and ovarian cancer, for which the risk is also high when testing positive for the BRCA mutation.

Gonzales didn’t. She wanted to have babies with the guy who had inquired about the pink ribbon tattoo on her arm on their third date and eventually married her.

Instead, she dutifully kept breast imaging appointments every six months, except during the time she was pregnant and breastfeeding.

Nine months after she and her husband, Gary, had babies Emma and Bella, she was diagnosed with breast cancer following an abnormal mammogram. She was at work at the Cancer Center of Kansas when her pathology report came in for her boss, Phu Pruong, who then became her oncologist. She had always joked with him that one day she could be his patient.

“I was more mad than sad,” said Gonzales about her diagnosis. “I wasn’t done having a family.”

After having had unrelated fertility issues, the couple had frozen four embryos, two of which resulted in the twins.

“It’s put those plans on hold. I have two more embryos frozen but no uterus to put them in,” said Gonzales. She opted to undergo a hysterectomy as well because her breast cancer was estrogen-driven.

“I felt like such a failure as a mother. I couldn’t lift my own kids,” she said. The girls weighed more than the doctors would allow her to lift after having her double mastectomy in February 2013.

“When I would hold my babies, it felt like there was something between us,” she said, referring to the loss of sensation women experience after undergoing mastectomies.

She spent her first Mother’s Day in May 2013 alone in a hospital after her white blood cell count dipped way too low.

Other concerns

A few months ago, Gonzales and another 30-something survivor started a young women’s breast cancer support group in Wichita. From her work as an oncology nurse and now as a survivor, she knows that young women have different concerns and issues when dealing with breast cancer.

Beal, who has plans of becoming a college professor, is applying to master’s programs in psychology in Kansas and elsewhere. She delayed searching for a job after graduation because she didn’t want to have to explain all the days she’d have to miss for treatments. Her healthy friends with college degrees have a hard enough time getting jobs, she said, so she doesn’t expect prospects to be better for someone with a major illness.

As cancer patients undergo treatments or join support groups, stories are shared, Beal and Gonzales noted. They have heard about the husband who left his wife after she was diagnosed with breast cancer or women finding it hard to date. They’re saddened to hear that there’s a young Wichita mother who doesn’t have long to live.

Gonzales has worried about dying from cancer before her kids grow up.

Breast cancer in younger women tends to be more aggressive, said Osland, the breast surgeon, but generally the survival rate is good because younger women tend to be more healthy and to not have as many other health concerns, such as heart issues or diabetes.

Intimacy and even vanity can be bigger issues for younger women. Whether to wear a wig during sex was a question Beal contemplated. When presented with treatment options, she chose a lumpectomy because she wasn’t ready for the scarring and no sensation, she said.

Treatments often put young women into premature menopause, causing vaginal dryness and increased risk of urinary tract infections and also causing premature aging of the skin, said Cusick, the breast surgeon.

The treatments can interfere with fertility issues, too, noted Osland. “You don’t know going into chemo what the body’s response will be.”

Ovaries that had stopped producing eggs during treatment may or may not start functioning again. Women who are taking tamoxifen to prevent recurrence shouldn’t get pregnant while on the medication.

Younger women may not have developed strong support systems with friends and family to help handle the physiological and psychological issues of treatments, noted Cusick.

That’s part of the reason Gonzales approached the local cancer education and support organization, Victory in the Valley, about starting the young women’s support group.

“We didn’t want it to be a typical support group, where you sit in a circle,” she said. The group also plans to do fun activities once a month, like meeting for happy hour or supporting a fellow group member whose art is on display during the Final Friday art crawl.

“We want to be out living and thriving,” Gonzales said.

This story was originally published September 13, 2014 at 2:15 PM with the headline "Young women with breast cancer have unique concerns."