Carrie’s Story

State and Federal Regulations were too vague for most women to understand

At the time of Carrie’s breast screening, she was living in Indiana. It is important to note that in 2013, the State of Indiana passed a law requiring that women be notified if they have dense breast tissue. This law was reinforced in 2016 to improve patient awareness and promote access to supplemental screening. Yet even with this mandate in place, Carrie received nothing more than a one-line notation buried in her mammogram report.

“The breast tissue is heterogeneously dense, which may obscure detection of small masses.”

That line was inadequate then, and it remains inadequate today. Without direct explanation from her medical providers or actionable follow-up, the law’s intent—to empower patients with knowledge—was never fulfilled in Carrie’s case. Even if the law at that time only required the dense tissue notification to appear in the mammogram report, Carrie’s primary care provider failed her by not personally confirming that she understood her risk—particularly the limitations of relying solely on mammography given her breast density. A conversation could have changed everything—and saved her life.

As of 2024, federal legislation now mandates that all 50 states must notify women if they have dense breast tissue following a mammogram. This new law also standardizes how the notification must be delivered: providers are required to issue a clearly worded, direct communication—not just a line buried in a radiology report. The goal is to ensure every woman understands what dense breast tissue means, the associated risks, and the importance of supplemental screening options such as ultrasound or MRI. This overdue change addresses the very gap that failed Carrie—but for far too many, it comes too late.

The Limitations of Mammography

It is the conclusion of experts in the breast cancer field that Carrie’s malignant tumor was allowed to grow silently behind her dense breast tissue, undetected by mammography alone. This speaks to the inherent limitations of mammography in women with dense breasts. In fact, studies show that mammography misses up to 50% of cancers in women with dense breast tissue. For these women, cancer can grow undetected for years, hidden by tissue that masks even suspicious masses. Supplemental screening methods such as ultrasound or MRI dramatically increase the chances of detecting cancer early—but Carrie was never told she needed them.

A SILENT INVADER: BRAIN METASTASES

After her diagnosis, Carrie entered a new phase of her cancer journey—one defined by rigorous treatment and unwavering determination. Carrie courageously faced intense treatments, including multiple rounds of chemotherapy, radiation therapy, and surgery. She followed the guidance of her oncologist, trusting him with her life, and continued to undergo routine CT scans from her chest to her pelvis every six months. All the while, she was told how well she was doing—she was even considered to be in remission—completely unaware of the silent brain tumor growing in her head and the devastation it would soon bring.

Despite the aggressive approach of treating her high-risk Stage III breast cancer by her oncologist, Carrie was never advised about the high risk of brain metastases associated with her type of cancer, nor was she offered proactive MRI screening. Over three years passed without brain imaging until symptoms—such as dizziness, falls, double vision, and changes in handwriting or fine motor coordination—appeared in September 2022.

By the time Carrie’s brain metastases were discovered, the largest tumor in her cerebellum had grown significantly, requiring emergency brain surgery. Her medical team informed her that the tumor was compressing a critical spinal fluid pathway, and without immediate intervention, the condition could become fatal. Additionally, there were smaller suspect lesions noted on the opposite side of her cerebellum. Clinically, tumors under 2 cm in size are often considered ideal candidates for focal radiation (a precise type of radiation that targets tumors while sparing healthy brain tissue) and other modern, less invasive treatments, which can help preserve neurological function, extend life, and provide a better quality of life while reducing long-term morbidity (ongoing health complications or impairments resulting from the illness or its treatment). Had Carrie’s largest tumor been discovered earlier, it may have been small enough to be managed with such targeted approaches—potentially avoiding the need for extensive surgery and broad radiation.

Although the surgery was life-saving, Carrie suffered permanent disabilities including loss of mobility, severe head tremors, impaired speech, and profound hearing loss due to broad radiation therapy. She fought tirelessly in physical therapy, hoping to regain independence, but sadly, Carrie never walked unaided again, nor was she able to resume activities she once cherished.

The Inexcusable Guidelines Defense by Her trusted Onocoogist

The day before her brain surgery, Carrie confronted her oncologist about why she had not been informed of the high risk of brain metastases. The oncologist repeatedly stated:

“I was just following the guidelines.”

When Carrie pressed further, asking why he would not advise her of the risk as a professional, he again reiterated:

“I was just following the guidelines.”

He then added:

“Now that you have been diagnosed with a brain tumor, you will receive routine MRI screening of the brain every 90 days.”

As if this reactive plan—only triggered once the damage was already done—should somehow be reassuring.

This statement exposed a troubling disparity in the standard of care: breast cancer patients—regardless of their risk level—are not offered brain imaging until symptoms emerge. Yet once metastases are discovered, routine surveillance becomes standard protocol. This reactive approach leaves women like Carrie vulnerable to catastrophic consequences that could be prevented through early detection.

A Fight for Change

Carrie lost her battle with breast cancer in January 2025. Still trying to understand the disparities in the healthcare system regarding prescreening of the brain in breast cancer patients, I consulted a highly esteemed neuro-oncologist. As we sat together, he explained, “Apparently you and Carrie were never told or fully informed of her high risk of developing a brain metastasis, and no brain MRI screening was ever offered to her.” He continued:

“Her very large posterior fossa brain metastasis was not discovered until it was symptomatic, and its treatment resulted in loss of lower cranial nerve function and ultimately radiation necrosis involving her brainstem. Had it been discovered earlier, it would have been treatable with a much lower risk of morbidity.”

What he meant was that if Carrie’s brain tumor had been detected earlier—before it became symptomatic (showing signs like blurred vision, balance problems, and difficulty with handwriting) and dangerously large—the oncology community recognizes it could have been treated proactively using today’s advanced systemic therapies and precise focal radiation techniques. This may have spared her from the invasive surgery and devastating neurological damage that followed—complications that severely diminished her independence and stripped away the quality of life she so deeply cherished.

✨ CARRIE WAS FAILED BY HER MEDICAL PROFESSIONALS AND THE SYSTEM NOT ONCE, BUT TWICE. ✨

THE FIRST FAILURE: Occurred between 2016 and 2019, when Carrie was never properly informed of the significance of her dense breast tissue or the limitations of mammography alone. Had she been counseled on the need for supplemental screening such as ultrasound or MRI, there is a high probability that her breast cancer could have been detected at an early stage. For women diagnosed with early-stage breast cancer, the five-year survival rate in the U.S. is as high as 98%.

THE SECOND FAILURE: Came during her treatment—after her diagnosis—when her oncologist never informed her of the substantial risk of brain metastases. Carrie’s oncologist never informed her of the substantial risk of brain metastases associated with HER2-positive, high-risk Stage III breast cancer. For women in Carrie’s situation, the risk of developing brain metastases can be as high as 22%. Women with metastatic breast cancer face an even higher risk—on average, approximately 40% will develop brain metastases over the course of their disease. When Carrie asked her oncologist why she hadn’t been warned of this possibility, he responded, “I was just following the guidelines.” The guidelines he referred to were from the National Comprehensive Cancer Network (NCCN)—a group that creates the gold standard for cancer treatment protocols. Unlike lung cancer patients with Stage II or greater and melanoma patients with Stage IIIb or greater—who are recommended by the NCCN to receive brain MRI screening for early detection—breast cancer patients, including those with high-risk diagnoses like Carrie, receive no such proactive recommendation.

The NCCN (National Comprehensive Cancer Network)—a nonprofit alliance of leading cancer centers that sets the gold standard for clinical guidelines—formally recommends routine brain MRI screening for early detection in patients with lung cancer (Stage II or greater) and melanoma (Stage IIIb or greater). But for breast cancer patients—even those with aggressive HER2-positive or high-risk profiles like Carrie—no such screening is recommended. This omission in their guidelines reflects a systemic blind spot that continues to cost lives. This disparity in guidelines exposes a deeply troubling inconsistency in the standard of care among cancer types. This gap in care persisted throughout Carrie’s treatment and ultimately cost her the opportunity for early detection.

Carrie’s story highlights a critical gap in breast care—from routine screening to high-risk patient management—the absence of appropriate supplemental screening recommendations during her initial breast evaluations, and the lack of proactive brain MRI screening or transparency about the risks of brain metastases in high-risk and metastatic breast cancer patients. Her experience underscores the importance of early detection, which could have dramatically improved both her initial breast cancer outcome and her long-term treatment options and quality of life. There’s a strong probability—supported by national data—that Carrie would still be here today if the system had not failed her. Early-stage breast cancer is highly treatable when caught in time, offering patients a vastly different outlook than what Carrie endured.

I lost my best friend, soul mate, and the love of my life. I was forced to witness her struggle—helpless to ease her suffering—as she battled for every bit of strength and independence. Carrie was deeply let down by the very professionals she relied on for guidance. Her primary care physician failed to advise her of the known limitations of mammography in women with dense breast tissue—a condition clearly noted in her reports. A single line in a radiology summary was never enough.

She Deserved a Real Conversation, Real Options, and Real Advocacy.

Her oncologist also failed her. He knew of her elevated risk for brain metastases as a HER2-positive, high-risk Stage 3 patient, and yet said nothing. He never explained the danger or offered the opportunity for proactive screening. That silence cost her dearly. Shame on the system that creates an unspoken message to oncologists, discouraging them from fully informing and empowering patients to make their own decisions based on their risk.

• Would either of Carrie’s care providers—her primary care physician or her oncologist—have simply followed the guidelines if it were their own wife, daughter, niece, or sister?
• Would they have stayed silent, knowing what they knew?
• Would they have let their loved one face the same suffering Carrie did—unaware, unprepared, and without a chance to choose a different path?
• Would they have failed to mention the limitations of mammography for women with dense breast tissue?
• And once diagnosed with high-risk breast cancer, would they have stood by in silence instead of recommending a life-altering brain MRI—one that could have offered their loved one a better quality of life in their final years—just because the NCCN guidelines didn’t recommend it?

The thought of other families—and of single women enduring what Carrie did, alone and without warning—forged in me an unshakable drive to change this broken system.

Carrie and I supported breast cancer causes for many years, even before her diagnosis. But we never truly understood the mental anguish, pain, and suffering endured by the brave women fighting for their lives—and the toll it takes on their families—until we lived it ourselves. In her final years, Carrie made a promise to help other women going through similar circumstances in any way she could. Though she could no longer physically fight for better standards of care, we did so together through donations and building awareness.

My promise to Carrie was that I would never stop fighting for her—and for the other women facing this devastating disease. And I never will.

In loving memory of Carrie Lyn Lawrence
Submitted by her husband,
Kevin D. Lawrence