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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 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 , and surgery under , to remove the affected lymph nodes. Since then, she¡¯s had several more rounds of chemotherapy, as well as percutaneous ablation therapy under 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.¡±

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