Assuming breast changes are ‘normal’ could lead to missed inflammatory breast cancer diagnosis
Selfless, humble and a caring friend – with a wicked sense of humor – is how Kara Kent describes her late sister, Lori Gill Grennan, who died at age 36 of complications from a rare form of breast cancer that is often misdiagnosed or diagnosed in late stages because it is so rare that doctors may mistake it for a breast infection.
Kent hopes her sister’s story will inspire others to be their own health advocates and push for answers if they have concerns about their health.
“My sister was a physician. She knew something was wrong – and doctors continually dismissed her concerns. It took a self-referral to a breast cancer expert to confirm her concerns were valid. By then, she had a metastatic, inflammatory breast cancer diagnosis and limited treatment options,” Kent recalled.
“The disease stole her future and precious time with her children. Lori was ready to do anything she could do to extend her life, and her wish was that other women would not have to face the same devastating diagnosis.”
Before she passed, Grennan worked with her family to establish the Hunt for Hope scavenger hunt fundraiser for the Inflammatory Breast Cancer Network Foundation. It has since evolved into the Strikes Against Cancer bowling fundraiser.
The events have raised more than $750,000 to support inflammatory breast cancer treatment and research initiatives underway at The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James).
Among those initiatives is the inflammatory breast cancer program at the OSUCCC – James’ Stefanie Spielman Comprehensive Breast Center, designed to provide faster coordination, evaluation and testing when the disease is suspected.
Surgical, medical and radiation oncologists, as well as breast radiologists, reconstructive surgeons, physical therapists and nurses work together to provide personalized care, and have developed a formal best-practice clinical decision tree to help identify cases that require urgent attention.
Know the signs of inflammatory breast cancer
Inflammatory breast cancer accounts for about 1% to 5% of breast cancers in the United States.
It’s aggressive – growing and spreading quickly over weeks to months – and can be missed on mammograms, says Samilia Obeng-Gyasi, MD, MPH, an OSUCCC – James surgical oncologist and associate professor of Surgical Oncology in The Ohio State University College of Medicine.
Dr. Obeng-Gyasi says the disease can affect people of any age or racial background but tends to be diagnosed at a younger age and is more common among Black people and people with obesity. Like other breast cancers, it also can be linked to dense breast tissue and a family history of breast cancer.
“One misconception is that breast cancer always causes a lump: Inflammatory breast cancer often does not,” Dr. Obeng-Gyasi says. “Another misconception is that a red, swollen breast must be mastitis or another breast infection. While an infection is a more common explanation, symptoms that persist or worsen need further evaluation.”
Common signs of inflammatory breast cancer include:
- Rapid breast swelling or enlargement
- Breast skin color changes: pink or red on lighter skin tones; dark red, purple or bruise-like on darker skin tones
- Breast warmth
- A feeling of heaviness in one breast.
- Thickened or dimpled breast skin, sometimes referred to as orange-peel skin
- A nipple that turns inward
Dr. Obeng-Gyasi says it’s important to promptly report any breast changes to a primary care provider.
If you’re diagnosed with a breast infection, reach out to your doctor if symptoms don’t improve within a week of starting antibiotics – sooner if symptoms worsen or spread. If your concerns remain unaddressed, ask for a referral to a breast specialist or contact a breast center for a second opinion.
“I encourage women to pay attention to changes in their breast tissue. While our bodies do change as we get older, radical changes in the shape, feel or symmetry of the breasts should always be evaluated by a physician,” says Amy Kerger, DO, a diagnostic radiologist at The Ohio State University Wexner Medical Center and a close friend of Grennan.
Watching her friend face this diagnosis cemented Dr. Kerger’s career path to specialize in breast imaging.
One woman’s story brings awareness to a rare disease
Grennan was a 32-year-old mother of two children, then 4 years and 6 months old, and had just launched her own family medicine practice when her breast became extremely hard.
Kent recalls being on a sister trip when Grennan joked that her breast was so hard, that it felt like a steel plate, even suggesting that Kent should punch her as proof.
“That is how she dealt with things – humor – but she was a physician, and I knew she was concerned,” Kent recalled.
Grennan’s doctors concluded she had mastitis, a breast condition that sometimes occurs in lactating people in the year following childbirth. Grennan was treated with antibiotics twice. When the infection didn’t resolve, she was sent for a mammogram: no concerns.
Trusting her instincts and frustrated, she referred herself to a breast specialist who, following a biopsy, confirmed advanced-stage breast cancer. Grennan then completed chemotherapy, radiation treatment and a mastectomy, followed by additional chemotherapy regimens when the cancer recurred.
“She was determined to do anything so she could live and spend more time with her family,” Kent says. A perpetually giving person, Grennan chose to channel her story into awareness and fundraising to help others facing the same diagnosis.
Grennan’s mother, Sheila Gill, says her daughter would want others to know they are not alone in facing this disease. Grennan would encourage them to be their own health advocates, perhaps joining a group of people facing the same diagnosis.
“Women need to be particularly vigilant after childbirth. Accurate diagnosis is often missed with mastitis being so common. Lori said she was so healthy otherwise that she ignored her own unease early on. She said she had sent many women patients for tissue biopsies who presented with symptoms like her own. She would want women to sincerely be their own health advocates,” Gill says.
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