Inflammatory breast cancer survivor is grateful for clinical trials

Not long after moving into her new house, Dana Evans noticed an itchy red spot on her left breast.

“I’d seen a few spiders in the house, and I thought one of them had bitten me,” she says. “I applied warm compresses and antibiotic cream, but my breast became even more swollen and red.”

Dana visited her family doctor, who ordered a biopsy. The results revealed inflammatory breast cancer, a rare and very aggressive form of the disease.

“I’ll never forget the moment I learned I had cancer,” Dana says. “It was New Year’s Eve, and I was looking forward to celebrating. What should have been a fun day became anything but fun.”

Scans showed the cancer had spread to Dana’s brain and left hip. The doctor’s advice was blunt: “Get your affairs in order.”

“I began planning my funeral,” Dana says. “I didn’t want to burden my family when my time came.”

What makes inflammatory breast cancer different

Inflammatory breast cancer, or IBC, accounts for less than 2% of all breast cancers. It typically grows in sheets that quickly cover the breast, making detection by mammogram more difficult. Fifteen percent of patients, however, will develop a detectable lump.

IBC causes cancer cells to clog the lymph ducts which normally drain excess fluid away from the breast. Fluid builds up, causing the breast to swell and become red and inflamed. The nipple may flatten or turn inward, and the skin may develop a thick, pitted appearance, like the peel of an orange.

Because IBC symptoms can mimic other conditions, it’s sometimes mistaken for a breast infection called mastitis, or for common skin allergies like eczema or dermatitis. By the time it’s diagnosed, this fast-growing cancer has often progressed to an advanced stage.

“It’s so rare and it happened so fast,” Dana says. “I’d never heard of inflammatory breast cancer. I wish more women knew the warning signs. Time is of the essence with this disease.”

Heading ‘home’ for rare cancer treatment

The medical director at the health insurance company where Dana worked learned of her diagnosis and urged her to call MD Anderson for an appointment.

“MD Anderson specializes in rare cancers like yours,” the doctor said. “That’s where you need to be.”

Dana agreed. She’d worked at MD Anderson in the 1980s as a unit clerk and monitor technician.

“When I walked through MD Anderson’s doors 35 years later – this time as a patient – I felt like I’d returned home,” she says.

More inflammatory breast cancer treatment options

Dana laid it on the line during her first meeting with breast medical oncologist Sadia Saleem, M.D.

“I told Dr. Saleem that I’d already been instructed to get my affairs in order, so I knew my time was limited,” Dana recalls. “Don’t sugar-coat anything,” she told Saleem. “I’m strong and I can take it.”

Saleem was reassuring and supportive.

“IBC is an aggressive cancer, but treatment has come a long way in the last few years,” she said. “We have options.”

Dana breathed a sigh of relief.

“Dr. Saleem gave me hope,” she recalls. “I relaxed and put myself in her hands.”

A target therapy for HER2-positive breast cancer

During the next six years, Saleem referred Dana to several clinical trials testing experimental drugs so new that they were not yet approved by the Food and Drug Administration (FDA). One of the clinical trials Dana participated in led to FDA approval of tucatinib, a targeted therapy for patients with HER2-positive breast cancer.

HER2 is a protein that lives on the outside of breast cells and plays an important role in controlling cell growth. Dana’s breast cancer cells had higher-than-normal levels of HER2, which allowed them to grow quickly. Cancers with high levels of HER2 are called HER2-positive.

“The bad news is these cancers tend to grow and spread faster than other breast cancers,” Saleem explains. “The good news is they’re much more likely to respond to targeted drugs like tucatinib that zero in on and block HER2. This interference slows the cancer cells’ growth.”

Clinical trials move new cancer treatments forward

Dana has participated in four clinical trials so far. Over time, the cancer slowed, then progressed.

“The variability between clinical trial participants can be great,” Saleem explains. “Any two patients may have starkly different responses to a drug.”

Dana knows that and remains upbeat.

“When my cancer starts to spread, MD Anderson always has another clinical trial in mind for me,” she says. “New treatments are constantly on the horizon.”

Saleem and her co-workers in MD Anderson’s Morgan Welch Inflammatory Breast Cancer Research Program and Clinic follow Dana closely and provide her with the most up-to-date treatments. The clinic is the first in the world dedicated to diagnosing and treating IBC.

Dana recently enrolled in a fifth trial of a drug called Enhertu. It’s a targeted therapy designed to help HER2-positive patients whose cancer has failed to respond to other treatments. The FDA approved Enhertu in December 2019. The follow-up trial Dana’s participating in is studying changes in cancer cells that can affect whether patients respond to or resist the drug.

“Even if it doesn’t help me, it may help someone else,” Dana says.  “One of the best ways to help other patients is by contributing to research that moves new treatments forward. That’s why I participate in clinical trials.”

Support from family and friends through inflammatory breast cancer treatment

Today, Dana estimates she’s operating at 70% of her 100% capacity.

“I get a little wobbly sometimes, but I’m doing well.”

She misses volunteering at church and in the community, but hopes to start again soon.

Two years into her treatment, her husband of 20 years left, saying he “didn’t sign up for this.”

“Honestly, that was a relief,” Dana recalls. “I was able to begin focusing on my health instead of an unhappy marriage.”

Her three grown children – Angela, Cherelle and Gilbert – “surround me with love and support,” she says. “I fully appreciate all they do for me, having been a caretaker to my own parents when they both had cancer. I have a unique perspective. I see cancer from both the patient’s and caregiver’s point of view.”

Neighbors and church members call and visit Dana regularly. Her 23-year-old granddaughter lives with her and helps around the house.

“I wish I could share some of the love I receive with other cancer patients who don’t have this kind of support,” she says. “My faith, family and friends make dealing with cancer so much easier.”

On cue, Dana’s miniature dachshund, Brownie, hops onto her lap and settles in for a nap.

“When he’s not in my lap, he’s trotting by my side,” she says. “He’s never out of my sight. We’re best buddies.”

COVID-19 vaccine allows family to reunite

Early in the COVID-19 pandemic, Dana began organizing a Zoom meeting every two weeks to keep in touch with her seven brothers and sisters and their families.

“It’s great seeing their faces on the screen,” she says, “but it’s even better to see everyone in person.”

After becoming fully vaccinated against COVID-19, Dana travelled to Austin last month to meet her newborn grandchild, Aubriella.

“We had the most wonderful visit,” Dana says. “I’m so grateful to MD Anderson for giving me extra years with my beautiful family.”

Remembering how defeated she felt six years ago after being told to get her affairs in order, she offers this message of hope to other cancer survivors: “I’m still here. We’re all fortunate to be living in a time when there are so many new treatment options. Thank God for MD Anderson.”

Request an appointment at MD Anderson online or by calling 1-877-632-6789.