By Iris Di Cesare noticed her first breast lump in 2016, when she was a college senior. “I had an ultrasound, a biopsy, and it was benign,” she recalls to TODAY.com.
Her doctor explained that it was a fibroadenoma, a marble-sized noncancerous breast tumor, and that she should “keep an eye on it,” so she did.
Several years later, in February 2022, she discovered an even larger lump, but she brushed it off. “I thought maybe it was because of my period or because, you know, I’m just going crazy,” she explains. By April, however, it was undeniable. “It had drastically gotten bigger,” she says.
Breast Cancer at 26
Di Cesare, who lives in Chicago, went to her gynecologist to have the lump inspected, and a week later, she was getting an ultrasound at Northwestern University’s Department of Medicine. Soon after, she got the mammogram, and the day after that, the lump was biopsied.
Although she hadn’t noticed it at first, the skin around her nipple had also started to change. What was once smooth had rippled, creating an uneven texture she’d never had before. A quick internet search indicated it could be a cancer symptom.
She willed herself to stay calm. She’d been in this position before, had these thoughts before, and everything had turned out fine. If it wasn’t cancer, she could deal with it, Di Cesare remembers thinking to herself. She wasn’t sure she could deal with the alternative.
But she was going to have to.
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The biopsy confirmed her second breast tumor was cancerous, nestled next to the benign one. “Had I never had my benign one, I never would have known my baseline — what felt normal. I never would have been vigilant about keeping an eye on that area,” says Di Cesare.
At 26 years old, she was diagnosed with Stage 3 invasive, hormone-positive, ductal carcinoma, a type of breast cancer.
Still, the Northwestern doctor who delivered the news reassured her that it was “the most common, the most treatable, and I felt better knowing that,” Di Cesare says.
Immediate Treatment
Di Cesare’s treatment plan was initiated quickly. “They got me in really fast,” she says.
That May, she began three months of chemotherapy every other week. Then she took August to rest before having surgery in September 2022.
Although the cancer was in her right breast, Di Cesare elected to have a nipple-sparing double mastectomy, where both breasts were removed.
She knew that the data shows removing both breasts doesn’t improve survival rates in most women who have cancer in only one breast. And because she didn’t have a family history of breast cancer, there was no recommendation to do so by her doctor. But she wanted peace of mind. “I want to do everything I can to not have to do this journey of cancer ever again,” she says.
During the operation, Di Cesare’s doctors also removed 20 lymph nodes and determined the cancer had spread to two of them.
Next came 25 days of daily radiation therapy and four breast reconstruction surgeries by a plastic surgeon.
Side Effects Paired With Financial Challenges
Most of Di Cesare’s physical side effects are overshadowed by fatigue. “That’s probably my biggest one,” she says. “There’s no describing the fatigue. It’s just there.”
The medication she’s required to take for the next few years brings it on. She’s also in medically induced menopause which means hot flashes, insomnia and sexual changes.
Di Cesare’s cancer journey could have ended there — fatigue among other side effects and a rotation of drugs to keep her healthy — but she had to fight financially, too.
When she was diagnosed, Di Cesare had just switched to her own insurance plan, like many 26-year-olds.
“Navigating insurance (from) a normal standpoint can be confusing,” she says. “Let alone now you’re going to the doctor constantly. Now you have to meet your deductible and co-pays, and it’s, like, I don’t even know what this means.”
Di Cesare was spending thousands of dollars on her medical care because she had no other choice. And then, after radiation, and once she’d begun her drug cocktail, she lost her job. “The company I worked for went under,” she says.
She and other former employees were told they’d have insurance for a while longer, but her coverage ended sooner than she was told it would, which would have resulted in a gap in her coverage. Di Cesare couldn’t have that. So, she turned to the place she was spending a great deal of time anyway: the hospital.
The social workers at Northwestern “were able to help me find state insurance,” she says. And they connected her with the Illinois Breast and Cervical Cancer Program, which offers free testing and exams to eligible women. Di Cesare calls it a lifesaver.
“That covered all of my medicine and all of my treatment and all of my doctor appointments. So that was a blessing that I needed,” she adds.
“Many (cancer patients) draw from savings, including retirement accounts, take on debt through credit cards or loans, or make difficult decisions about household spending,” Shane Jacobson, chief executive officer at the American Cancer Society (ACS) and the American Cancer Society Cancer Action Network (ACS CAN), tells TODAY.com.
“Some delay filling prescriptions, postpone follow-up appointments or skip recommended care because of cost,” he adds. And that’s only about the medical side of things. Transportation, lodging and childcare all add up, too.
Even with comprehensive insurance, he says, patients might spend tens of thousands on their care out-of-pocket. “Average annual costs exceeded $6,000 for patients with breast, colorectal, and lung cancers,” he adds. Nearly half of cancer patients have medical debt, and nearly all of them have insurance.
A single diagnosis is more than illness and subsequent treatment, Di Cesare quickly learned. It’s both “cancer and financial toxicity,” says Jacobson.
“For those unable to work, programs such as Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) can provide support,” he adds. “Medicaid, Medicare, Marketplace coverage, and other public assistance programs may also help families navigate coverage gaps and financial hardship.”
Di Cesare shares her story to raise awareness of breast cancer symptoms and the resources available to help pay for care. She urges women to know their baseline, as she did. Don’t wait for the lump. Be familiar with your breasts, check your clavicle area, she says, and feel your armpits.
Know what’s normal so you know when to seek medical attention. It made all the difference for Di Cesare. And while “it was a journey,” she says, “it’s positive now. So, (I’m) thankful for that.”
