Extra-mammary Paget’s disease survivor: Time matters

In 2013, Sandy Fontan was a 53-year-old marathon runner in tip-top shape. She maintained a healthy diet and ran between 25 and 30 miles a week. Then, one day, she noticed a little bump on her anus. It didn’t hurt or bleed, so she thought it was a hemorrhoid. She watched it for more than a year before mentioning it to her gynecologist.

Today, Sandy wishes she’d mentioned it sooner. Because that little bump turned out to be something more serious: an extremely rare type of cancer called extra-mammary Paget’s disease, which usually appears on the skin of the breast.

“I was so stunned, I couldn’t even speak,” Sandy said of her reaction to the news. “My mother had breast cancer, but it was not hereditary.”

By the time Sandy was diagnosed in 2014, the cancer had already spread to her groin and lymph nodes. Since then, it’s reappeared in other locations almost every year, including twice in her liver and twice in other lymph nodes. Sandy keeps the cancer at bay with a combination of chemotherapy, surgery, radiation therapy and ablation therapy at MD Anderson.

“I may never be cured, but for now, it’s still treatable,” she says. “And if it wasn’t for MD Anderson, I would’ve already died. So, I know I’m at the best possible place.”

An extra-mammary Paget’s disease diagnosis

Sandy found out she had cancer after the ointment her gynecologist initially prescribed did nothing to shrink the little bump. That doctor sent her to a surgeon to have it removed.

But when Sandy woke up from the anesthesia, the surgeon told her he’d been unable to remove the growth completely. He wasn’t sure what kind of tumor it was, but it was definitely more than a hemorrhoid. And it was invasive. The surgeon referred her to oncologist, who ran some tests and determined it was likely extra-mammary Paget’s disease.

“There’s not much information out there about this,” Sandy says. “So, my oncologist didn’t know a whole lot about it. It’s so rare, he couldn’t even stage it. He wasn’t sure how to treat it, either. That’s when my husband said, ‘Let’s go to MD Anderson.’”

Extra-mammary Paget’s disease treatment

At MD Anderson, the first cancer specialist Sandy worked with (now retired) told her it was only the tenth time he’d ever seen it in his 30 years of practice. And extra-mammary Paget’s disease occurs so infrequently that no standard treatment protocol exists.

Still, Sandy felt encouraged after learning that extra-mammary Paget’s disease is considered a slow-growing cancer. She also felt reassured by her care team’s willingness to try different approaches to treatment.

“My doctors had nothing to compare it to,” Sandy says. “So, they created a treatment plan just for me.”

First, Sandy had radiation therapy under Bruce Minsky, M.D., combined with oral chemotherapy to make it more effective. That kept her cancer-free for about three months. When the cancer reappeared in her abdomen, she had more chemotherapy under Daniel Halperin, M.D., and surgery under John Skibber, M.D., to remove the affected lymph nodes. Since then, she’s had several more rounds of chemotherapy, as well as percutaneous ablation therapy under Bruno Odisio, M.D., an interventional radiologist.

“It’s not curable, but it is treatable,” Sandy says. “And I’m up for anything, so it’s worth it.”

A message to others: don’t delay medical attention

Sandy’s last clear checkup was in February. In May, scans showed a tiny new spot of cancer growing on one lymph node in her groin. Since COVID-19 has limited interstate travel, Dr. Halperin is working with Sandy’s doctors in Mississippi to treat her cancer locally.

“If there’s something major that needs to be done, I’ll do it at MD Anderson,” she says. “But I can have all my scans and regular chemotherapy done close to home.”

After everything she’s been through over the past six years, Sandy’s message to friends and family members is clear: do not delay seeking medical attention.

“Anything that doesn’t look right, go get it checked immediately,” she says. “Time matters.”

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