Adult rhabdomyosarcoma survivor learns to appreciate every day

Fort Worth resident Susan Pratt was playing tennis in June 1995, when she realized she couldn't feel the left side of her gum line.

Figuring it was just a sinus infection, she went to a local ear, nose and throat doctor.

The physician knew something was seriously wrong, so he ordered a CT scan. The results surprised both of them: Susan had stage IV rhabdomyosarcoma, a very aggressive cancer usually seen only in children. She had a tumor in her left maxillary and ethmoid sinus cavities.

“The doctor couldn’t believe it,” Susan says. “Rhabdomyosarcoma is considered a childhood cancer, but I was 46 when he found it. My husband and I were both devastated.”

Rhabdomyosarcoma treatment begins at MD Anderson

Susan’s doctor referred her immediately to MD Anderson, where she met with Helmuth Goepfert, M.D., and Robert Benjamin, M.D. (both now retired).

She began receiving high-dose chemotherapy almost immediately, and enrolled in a clinical trial for a drug now called pegfilgrastim (Neulasta). It prompts the body to produce an abundance of white blood cells to counteract chemotherapy’s tendency to cause a severe drop in that critical blood component.

“I was very lucky,” she says. “They taught me how to give myself that shot, and I only missed one dose of chemotherapy because my blood count was low. That drug is now available to all cancer patients.”

Rhabdomyosarcoma takes a back seat to grief

Susan was still reeling from the news that she had cancer when life dealt her another blow. On their very first night home from MD Anderson, her husband was fatally shot in the back by teenagers while walking their dog.

“It was a terrible tragedy, but I’m a survivor,” Susan says. “I was so busy grieving, I didn’t realize how sick I was.”

That double dose of heartache served as a more than a distraction. It also taught Susan something valuable.

“One thing I’ve learned is that everybody has tragedy in their lives,” Susan says. “My life was completely changed by cancer and my husband’s death. So you learn to appreciate every day you’ve got.”

Rhabdomyosarcoma treatment with a dose of compassion

Initially, Susan was reluctant to continue her treatments after her husband’s murder, but she agreed to do so at Benjamin’s insistence.

“It was overwhelming to see the care, concern and compassion of all of my doctors, but especially Dr. Benjamin,” Susan says. “He saved my life with chemotherapy and eased my grief with compassion.”

Dealing with radiation side effects

As a part of her rhabdomyosarcoma treatment, Susan also received five weeks of radiation therapy. Eventually, it weakened her jawbone to the point that it fractured, and she lost half of her soft palate and all of her teeth on the left-hand side.

Doctors created an oral prosthetic device to give Susan’s face a more natural appearance. “It looks kind of like a retainer, but it’s made to go up into that hole in my head,” Susan says. “It’s got fake teeth in it and a couple of little wires that hook onto my other teeth.”

The doctors also built a new jawbone for Susan using her fibula. “It was quite an ordeal, but by golly, it worked,” Susan says. “Dr. Mark Chambers in the dental department; Dr. Randal Weber, my new head and neck man; and plastic surgeon Dr. Peirong ‘Ron’ Yu created a perfect jaw for me. It’s beautiful.”

Adjusting to life after rhabdomyosarcoma treatment

The oral prosthesis affects her ability to chew and breathe well while exercising, so Susan is no longer as physically active as she once was. But she continues to walk her dog three miles a day, plays duplicate bridge three times a week and has taken up mahjong.

And most importantly, she remains cancer free 20 years after completing her treatment.

“I am alive today because of the fabulous physicians who treated me at MD Anderson 21 years ago. Dr. Benjamin calls me a miracle, and I call him my genius,” she says.

“If you’re at MD Anderson, just thank God every day,” Susan tells others. “Every physician has your welfare at heart. So keep the faith. You’re in great hands.”

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