Women diagnosed with breast cancer in their 20s, 30s, 40s describe being robbed of their femininity

Bianca Carter was 29-years-old and the mother of a 2-year-old son when she noticed a lump in her left breast.

When she went to her doctor, Carter said she was told the lump she felt was not there.

"I was really persistent and said, 'No, there's something definitely there. Can you please [do] due diligence and ... do some extra checking?'" Carter, of Bristol, Conn., told "Good Morning America." "And at that point, they did an ultrasound and then later on, a mammogram."

With no family history of breast cancer, Carter said she was diagnosed on May 15, 2017, two days before her 30th birthday, with invasive ductal carcinoma that later progressed to stage 3 breast cancer.

Over the next nine months, Carter would undergo eight surgeries -- including a double mastectomy, reconstruction surgeries, and a full hysterectomy -- as well as 10 rounds of chemotherapy and 40 rounds of radiation.

"Because I was so young, everyone would look at me and say, 'Wow, you're so young to have had breast cancer,' and I'm like, 'Well, here I am. I'm just trying to navigate it," said Carter, now 37. "Even now, I'm still going through hormone treatment, and they're treating me as if I was a 47-year-old woman and I'm indeed 37."

With her diagnosis seven years ago, Carter joined a growing trend in the United States: More and more women facing a diagnosis of breast cancer before the age of 50.

From 2012 to 2021, at the same time that the number of deaths due to breast cancer dropped, breast cancer diagnoses increased by 1% each year, with the steepest rise among women under 50, according to an Oct. 1 report by the American Cancer Society.

Screening guidelines change, but a struggle persists

In response to the rising number of younger women diagnosed with breast cancer, the U.S. Preventive Services Task Force in April lowered the recommended age for women at average risk for breast cancer to start getting mammograms from 50 to 40.

By lowering the screening age, the Task Force predicted 1.3 cases of death from breast cancer per 1,000 women over a lifetime of screening could be prevented.

With more women being diagnosed at even younger ages, the struggle to be taken seriously medically persists for many women in their 20s and 30s.

Maria Costa, 35, of Pittsburgh, said when both her mom and her aunt were diagnosed with breast cancer in 2021, she asked her gynecologist for a mammogram.

Told she was too young for the screening, even with a long family history of breast cancer, it was not until one year later, in July 2022, at her next annual visit, that her doctor felt a lump in her breast.

"Even then, my doctor told me I was too young," Costa recalled, remembering that her doctor told her the lump was probably not breast cancer. "But she said, 'You know what? We'll still send you for a diagnostic mammogram,' and even when I went for my diagnostic mammogram, I was told there as well I was too young and, 'It's probably not cancer, but we're going to biopsy it anyways.'"

Shortly after the mammogram, Costa said she was diagnosed with stage 3 invasive lobular carcinoma. She was 33 years old at the time.

"I had to fight for doctors to listen to me, and if I was diagnosed in 2021, my journey could have been different," Costa said. "I've had a extreme difficult journey since I was diagnosed."

Costa's journey has included a double mastectomy, 16 rounds of chemotherapy, 25 rounds of radiation, being put into medically-induced menopause, undergoing egg freezing, and having multiple surgeries after developing infections from reconstruction surgery.

She said that while the pamphlets she sees in doctors' offices and in advertisements for things like wigs for cancer patients still reflect women in their 50s and beyond, the reality is that her oncologist is working to open an after-hours clinic because so many of her patients are still young enough to be working full-time jobs.

Costa noted that her own diagnosis at age 33 has disrupted not only her career and her financial stability but also her dream of getting married and starting a family.

"I am a single woman. I don't have children," Costa said, noting that by her estimation, nearly her entire 30s will have been consumed by her breast cancer diagnosis and treatment. "It is so difficult to be diagnosed in your 30s. I still have my whole life ahead of me but so much time was taken from me."

'My breasts were amputated'

The rise of women diagnosed with breast cancer before the age of 50 presents its own set of complications compared to women diagnosed in their 50s and beyond, who may be done having children and have already undergone physical changes like menopause.

Costa said before she even turned 35, she was experiencing hot flashes as she was undergoing medically-induced menopause and chemotherapy at the same time.

She said she's also had to confront the physical changes to her body as a single woman in her 30s.

After suffering several infections, her breast reconstruction surgery has been put on indefinite hold and she said her chest looks deformed as a result of multiple surgeries.

"On bad days, I'm like, 'I'm bald and I don't have a chest,'" Costa said. "How do I explain that? If I want to date, how do I have this conversation?"

She continued, "And everyone's like, 'Oh, well, your person, they'll understand,' and I'm like, 'Really, because I don't like looking at my chest.'"

Costa said she also has a completely different perspective on what it is like to undergo a double mastectomy, recalling that she apologized to a friend with breast cancer whom Costa told after her diagnosis, "Oh well, you're going to get great boobs."

"I apologized to her when I was diagnosed," Costa said. "It's not you have your breasts removed and you get a boob job. No, your breasts are being amputated. They are being taken against your will and you are being reconstructed, if you choose to be reconstructed."

It's a point echoed by Mariana Robbins, a 41-year-old mom in Charleston, South Carolina, who underwent a double mastectomy last year after being diagnosed with stage 1 invasive breast cancer following her first-ever mammogram.

"The recovery is difficult. It was about three or four months and you can't use your arms, you can't do anything," Costa said. "And there's pain, and I have residual pain maybe forever. I have nerve pain that's ongoing."

Following a diagnosis at age 40, Robbins said she is also living with the fear of her cancer returning and wondering if she'll be around to see her 4-year-old son grow up.

"There's always that fear, no matter what," Robbins said. "I've been cleared. I have no sign of disease at this point, which is amazing, and I'm so grateful, but that fear is always there, and I'm told that kind of stays with you forever."

Carter said being diagnosed with breast cancer at age 29 changed her and her husband's dream of having a big family. Now, she said she finds ways to parent in different ways, like being the team mom for her 9-year-old son's football team.

With still another five years to go on hormone therapy treatment, Carter said she tries to give herself grace on everything from having to take naps in the middle of the day to having a different body than the one she was born with.

"Just as a woman, you're almost stripped away from that femininity. You're stripped from your breasts and your female reproductive system ... It's not what it used to be," Carter said, adding that she sought out mental health therapy to cope. "There have been different things that I've done to help motivate myself so that way I feel like me again, or I feel sexy or empowered, to accept the things that I've gone through as not punishment, but as something that it's party of my journey.

No concrete answers for women

Unfortunately for women, there is no clear explanation for why the sharpest in new cases of breast cancer is happening to women in their 20s, 30s and 40s, according to Karen Knudsen, MBA PhD, CEO of the American Cancer Society.

Knudsen said researchers are seeing a similar increase in new cases among young people being diagnosed across at least 17 other types of cancer, including colorectal cancer.

"This is giving us the idea and the hypothesis that there must be more at play than the usual risk factors for breast cancer," Knudsen said. "What that is will require some more cancer research, but there are speculations."

Knudsen said researchers are looking at factors including the rise in obesity among young people and different exposures that are more common to Millennials and Gen X'ers than previous generations, like access to ultra-processed foods and increased alcohol usage.

Dr. Lisa Newman, a co-author of the ACS report showing the rise of breast cancer in young people, said another theory is that women are having fewer pregnancies and giving birth later in life.

"We speculate that it is related to differences in lifestyle and environment given the obesity epidemic and more women delaying their childbearing years and having fewer pregnancies over their lifetime," Newman, chief of the section of breast surgery at NewYork-Presbyterian/Weill Cornell Medical Center, previously told "GMA."

Both Newman and Knudsen said it's critically important that women get mammograms and do self-checks, watching for new lumps, skin changes, and nipple changes, including unusual discharge, pain, and redness.

Most women with average risk should start screening for breast cancer at age 40, and get screened every other year through age 74.

Women with dense breasts may be called back for follow-up testing, including ultrasound and/or magnetic resonance imaging.

Women at higher risk of getting breast cancer may also receive an MRI scan.

Even if the last mammogram is clear, women should discuss any changes with a healthcare provider.