Young women with breast cancer face unique challenges

Journal News reporter Heather Salerno reported on the many other obstacles that face women under 40 when they’re diagnosed with breast cancer, as part of our ongoing coverage for Breast Cancer Awareness Month. Here’s the story as it appeared in print:

In June 2007, just a month after being diagnosed with stage 2 breast cancer, Cortlandt Manor’s Sue Andersen was sitting poolside in Las Vegas at her best friend’s bachelorette party.

Only 37 and the mother of two small children, Andersen had lost all of her hair during her first two rounds of chemotherapy. But she felt well enough to make the trip, and the celebration allowed her to briefly take her mind off her illness.

So on one 100-degree day, Andersen ditched her wig back in the hotel room and wrapped a bandanna around her bald head. To show their support, her group of pals donned scarves, too, a move that attracted some attention around the pool.

Breast cancer survivors, from left, Lauren Novotny of Dobbs Ferry, Kelly Thomas of Nyack, Sue Andersen of Cortlandt Manor and Pam Tole of Yorktown. All were diagnosed with the illness in their 30s. ( Xavier Mascareñas / The Journal News)

Breast cancer survivors, from left, Lauren Novotny of Dobbs Ferry, Kelly Thomas of Nyack, Sue Andersen of Cortlandt Manor and Pam Tole of Yorktown. All were diagnosed with the illness in their 30s. ( Xavier Mascareñas / The Journal News)

“The guys at the bar said, ‘What’s up with the bandanna?’ And my friends said, ‘Sue has breast cancer,’” recalls Andersen. “They said, ‘Come on, what’s the real story?’ They didn’t believe us because I was too young.”

Unfortunately, that perception — young women don’t get breast cancer — is all too common. The disease is still relatively rare among those in their teens, 20s or 30s: Most cases are in women over 50, with a median age of 61. But the numbers are significant.

About 5 percent to 6 percent of all breast cancer cases occur in women under 40 in the United States. And there are more than 250,000 breast cancer survivors in this country who were diagnosed at age 40 and under, according to the Young Survival Coalition and the Susan G. Komen for the Cure Advocacy Alliance. Even more alarming — when compared to those in their 50s and beyond, young women typically have a more aggressive form of the disease and a lower survival rate.

And while getting breast cancer is devastating at any age, younger women face a number of unique obstacles that compound an already heartbreaking diagnosis.

Those who are single wonder how to bring the “C-word” up on a date, or how they’ll pay their bills if they take time off work to recover. Young mothers are dealing with cancer while caring for their little ones — and praying that their children won’t have to grow up without them. And all face a possible loss of fertility, prompting fears that they may never have biological children, or be able to add to their family.

Not to mention, right from the start, they’re fighting a stereotype — one that can actually kill them. Because having breast cancer is so inconceivable to them, young women are less likely to seek medical attention right away. And if they do, doctors sometimes tell them to wait and watch a lump. Both approaches can lead to a later diagnosis, and for some, an earlier death.

“If you find something which is abnormal or something in the breast that you did not feel before, make sure you show it to a physician and don’t let him dismiss it,” says Dr. Abraham Mittelman, a medical oncologist with Northern Westchester Hospital and Phelps Memorial Hospital Center. “Pursue it,” he says, “until you have an answer.”

We wanted to get some more information out there about this particular group of breast cancer survivors, who face some very different concerns from their older counterparts. Here are four of the biggest challenges that young women encounter as they battle this life-changing disease.

Delayed diagnosis

Nanuet’s Jamie Pleva knows all too well about the importance of catching breast cancer early, when it can be more easily treated.

Her sister, Tracy, was 32 when she discovered a lump while breastfeeding her newborn son. Her obstetrician told her that it was probably a clogged milk duct and sent her home. But six months later, it still hadn’t gone away. A biopsy revealed that she was in stage 2B of the disease, which meant that it had already spread. After suffering through eight years of chemotherapy and radiation to keep the cancer at bay, Tracy died in 2009.

Just three months before Tracy’s death, at 29, Pleva herself was diagnosed with the same disease. Luckily, because of her sister’s history, Pleva was already taking preventive measures and getting extra screenings, so her cancer was in a very early stage; she had a double mastectomy and chemotherapy, and in December, it will be three years since her cancer diagnosis.

“I had a better start. My doctor took me seriously,” says Pleva. “If (Tracy’s) doctor had taken her seriously, she would probably still be here.”

A young woman with breast cancer is less likely to be diagnosed early because she hasn’t reached the age for regular screening tests, unless, as in Pleva’s case, there’s a family history or other risk factors. (The American Cancer Society recommends annual mammograms, the gold standard for breast cancer diagnosis, starting at age 40.) Plus, young women tend to have denser breasts, which can make mammograms harder to interpret. So in younger women, a problem will most likely present itself as a lump, swelling, dimpling or another change in the look or feel of the breast.

Dr. Mittelman, who says he has been treating more women between ages 25 and 40 in recent years, urges women to never ignore a lump.

“You can get an ultrasound, or you can get an MRI,” he says. “There are ways to get it checked out. Don’t leave it alone.”

But far too many young women do just that. A recent study from Boston’s Dana-Farber Cancer Institute found that nearly 25 percent of young women with breast cancer delayed seeking medical attention. Even more distressing, the same study said that 25 percent experienced a delay after seeing a doctor.

“The wait-and-see message is still out there, the ‘come back in six months,’” says Stacy Lewis, vice president of programming for the Young Survival Coalition, a New York City-based organization that offers resources and support to young women affected with breast cancer. “And that’s not necessarily the best course for young women.”

Dating and relationships

Dating for young women with the disease, who are more often single, also presents difficulties.
A woman in her 50s and 60s is more likely to have a spouse or be in a long-term relationship, with grown children. Many women in their 20s or 30s are looking for a partner, or just getting married and starting a family. Mastectomy scars, reconstructed breasts and other physical changes can lead to self-esteem and body image issues, too; research has shown that younger women are bothered more by these changes than older patients.

Dobbs Ferry’s Lauren Novotny, who was diagnosed last year at 31, is single and says that she’s not ready to start dating again. “I don’t know how to bring up what’s happened to me, and the surgery and scars and all of that,” she says. “It is a little frightening, but I feel that if the person is worth it, they will accept me no matter what.”

Kelly Thomas of Nyack, now 33, had a supportive boyfriend at the time she was diagnosed last year, but he was able to relate to her illness; when he was 19, he had Hodgkin’s lymphoma. Still, cancer took its toll on the relationship and they’re no longer a couple.

“Cancer wasn’t really what he signed on for,” explains Thomas. “He was amazing for so long and we’re still good friends. He helped me tremendously, but I was so needy and vulnerable and dependent on him. I wouldn’t see anyone all day long and I’d be home all day alone, and he’d come home from work and I’d be like a puppy, like, ‘Hey, talk to me!’ And he’d be like, ‘I just want to eat food and go to sleep.’ Things like that came up and became an issue.”

These days, Thomas brings up her breast cancer with men right away, so she can “weed out the ones who can’t deal.” She also wonders how a new guy would handle all of the side effects from her cancer treatments, like nerve damage in her legs and feet.

“I went to Ireland in March, and I had a hard time doing the sightseeing because my legs would start to throb after an hour,” she says. “That’s the sort of thing I’d have to tell someone I was dating: ‘Guess what? I’m annoying and I need to sit all the time.’”

Lewis of the Young Survival Coalition adds that many doctors don’t tell women how cancer treatments can impact intimacy and sexual experience, with possible effects that include a diminished libido, painful intercourse or loss of sensation. Some physicians also fail to warn young patients that chemotherapy and other drugs could plunge them into early menopause, a transition that even thirty-something survivors don’t expect to encounter for years.

Sue Andersen, for one, says that she’d rather go through menopause than have her cancer come back. Still, she didn’t think she’d be dealing with hot flashes and other symptoms before her 40th birthday. “You’re not thinking about that at all,” she says.

One thing she did worry about was how to help her daughter, Emma, and son, Peter, who were only 5 and 7 years old at the time of her diagnosis, cope with her illness. Older women are typically able to lean on their adult children for support, but little ones don’t understand why Mommy suddenly can’t read bedtime stories because she’s exhausted or ill from cancer treatments.

“I was so worried about my kids,” she says. “I tried to maintain a normalcy for them while going through this, when some days I felt horrible…I wanted to do as much as I could with them, but a 5- and 7-year-old don’t get it sometimes.”

Fertility

Another major concern is her potential loss of fertility. Both chemotherapy and the drug tamoxifen, which is often recommended to prevent recurrences, can damage the ovaries and cause a woman’s period to become irregular or stop completely.

Of course, a woman’s ability to bear children could be unaffected, but it’s impossible to know for sure. So at the same time she’s reeling emotionally from a life-threatening diagnosis and deciding on an immediate course of treatment, she’s forced to suddenly make plans for a future family.

Yorktown’s Pam Tole had been trying to have a baby with her husband, Jim, when she was diagnosed in 2004 at age 38. Finding out she had cancer was upsetting enough, but learning that she might never have a biological child was crushing.

Freezing eggs or storing embryos were ways to preserve Tole’s childbearing options, but both methods are expensive and didn’t guarantee a successful pregnancy later. “It would cost $30,000 on a less-than-maybe,” says Tole. “We didn’t have that kind of money to play with.” (There are certain drugs that might help protect the ovaries during chemotherapy, too, but their effectiveness is unclear.)

Now, Tole and her husband are trying to adopt a child. “This is not what I had planned for,” she says. “But nobody really plans for cancer.”

Despite the importance of this issue, it’s one that some oncologists neglect to discuss with their young patients. One study by a team of University of New South Wales researchers — recently published in the Journal of Clinical Oncology — found that many of the young women surveyed had relatively little knowledge about how their breast cancer treatments would affect their fertility.

That’s one reason Lauren Novotny left her original doctor for another practitioner. “I actually (had to bring) it up, and he basically said, ‘Here’s the number for a fertility specialist,’ and that was it,” she says. “That made me a little upset.”

Like Tole, Novotny couldn’t afford to harvest eggs for possible in vitro fertilization later on. So she’s waiting and hoping that she’ll be able to get pregnant down the road, when she’s ready to become a mother. “Every day, I worry about it and think about it.”

Career and finances

A cancer diagnosis can place a bigger burden on younger women, too, when it comes to their careers and income.

As a report by the Young Survival Coalition, Susan G. Komen for the Cure Advocacy Alliance and two other breast cancer groups points out, the hardship of cancer treatment might force a woman to cut back her hours or to quit a job completely, just when she’s starting to establish herself professionally and probably hasn’t had time to amass a large savings.

A younger patient is also at a disadvantage when she’s ready to re-enter the workforce, since she’d have less experience than competitors who are the same age. An older woman, by comparison, would likely have a longer and more stable work history on which to rely.

In fact, unemployment is a huge problem among young survivors. A 2009 Young Survival Coalition survey showed that the unemployment rate among its member base was a stunning 22 percent, far above the national average. No job means less money in a survivor’s bank account, of course, which means more stress as medical bills start to roll in.

“We all know when you’re behind on your bills, how emotionally impacting that might be. But if you’re behind on your bills and going for treatment, how does a young woman balance that, especially if she’s single?” says Lewis. “Does she feel she’s taking a step back because she’s relying on her parents again? Or does she feel she’s a liability to her family because her husband is embarking on his career and they have a small child?”

A child-care provider, Novotny was allowed to take eight months off from her job while recovering from surgery and chemotherapy. Yet she wasn’t earning a salary during that time, so she found it difficult to pay the rent for her Mount Kisco apartment and moved back in with her parents.

“It’s still hard to get used to,” she says. “It definitely was a drastic change in my life.”

A nurse, Andersen was working on a per diem basis at two hospitals when she was diagnosed: in the Hudson Valley Hospital Center’s intensive care unit and in NYU Medical Center’s neurosurgery department. She couldn’t work at all for six months while undergoing chemotherapy because of an increased risk of infection. But Andersen was lucky, because her husband, Peter, had a good job as a corporate insurance executive.

“If I had not been married, I’d have had no salary and no insurance,” she says.

Andersen acknowledges the fears and obstacles that confront any woman with breast cancer, regardless of age. But she does believe that a younger woman’s experience is very different.

“With an older woman, you’re more established in your family and your career. You have things set,” she says. “When you’re in your 20s and 30s, you’re just starting to prepare…and (cancer) stops you short: ‘Wait, I’m only 37! This is not in my plan.’”

Still, Jamie Pleva gives hope to those young women who believe that cancer has derailed their chance for a normal future.

Her first date with her boyfriend, Kevin Nickerson, was at the end of her chemo treatments. “I was at my skinniest, sickest, and of course, bald,” she says. “And he sat there all night staring at me, making me feel very self-conscious, but telling me how beautiful I was.” 

Then, last month, Pleva took part in the Tour de Pink, a three-day bike tour to raise money and awareness for the Young Survival Coalition. Just after she crossed the finish line, Nickerson dropped to one knee and proposed. They’re hoping to get married next summer.

“It is possible for a young woman to continue on with life after cancer,” says Pleva, “and it most certainly can be a beautiful and magical life.” 

Liz Johnson

Liz Johnson is the food editor of The Journal News and LoHud.com, for which she's won awards from the New York News Publishers Association, the Association of Food Journalists and the Associated Press. She lives in Nyack with her husband and daughter on a tiny suburban lot they call their farm — with fruit trees, an herb garden, and a yardful of lettuce, tomatoes, onions, shallots, cucumbers, zucchini, radishes, cabbage, peppers, Brussels sprouts and carrots and four big blueberry bushes.