Cervical Chordoma Doesn’t Slow Her Down

Chordoma survivor Janet Wilbanks with husband and first grandchild.

"IU Health was a real life saver. They treated me just wonderfully." -- Janet Wilbanks

Chordoma

In 2005, Janet Wilbanks , retired teacher of 33 years, wife and mother of two grown sons, was experiencing what she considered normal muscles aches in her right arm and shoulder. After a month of dealing with the pain, she decided it was time to see her family doctor. He ordered an MRI, which showed a mass on the cervical spine. After being referred to a neurosurgeon in Memphis, Tenn., approximately 120 miles from her home town of Martin, a biopsy revealed that the mass was a cervical chordoma. At the time of diagnosis, Janet was 59 years old.

Surgery followed, but complete removal of the tumor was not possible due to its location.  Because of that, her doctors recommended traditional follow-up radiation therapy. Neither Janet nor the doctors treating her at this particular time realized that proton beam treatment was one of the most effective types of radiation for chordomas. For a while all was well.

A year later, Janet felt a lump in her neck. The chordoma had returned and was growing very aggressively, which is not common because chordomas are typically slow growing. This time, area physicians were reluctant to perform surgery. They considered it too risky. One physician referred her to the Mayo Clinic where a specialist removed what he could. Again a follow-up treatment was needed. Janet underwent chemotherapy, but it was not successful.

By that time, Janet was exhausted and starting to lose hope. Doctors at the Mayo Clinic suggested she look into proton therapy. The first center she approached did not accept her case because she'd already been through radiation treatment. A Mayo physician suggested Janet contact the IU Health Proton Therapy Center, then known as Midwest Proton Radiotherapy Institute (MPRI). Janet was surprised, relieved, and thankful to find out she had been accepted for treatment.

When Janet arrived, she knew that this was her only chance for survival.  All other options had been taken off the table; and the tumor was once again growing very aggressively. In the weeks that followed, Janet and her husband regularly drove five hours from Martin, Tenn., to Bloomington, Ind., so she could receive the life-saving proton therapy treatments during the week.

When asked how she would describe her experience at the center, Janet said she absolutely loved the people there. "When they'd see me, they would run and hug me just like we were friends,” she recalls. "We were so glad to see each other, and they treated me just wonderfully."

Today, Janet is cancer free. During follow-up visits at the IU Health Proton Therapy Center, Janet always hopes to hear the words, “No new growth.” And these are exactly the words she has been receiving since the completion of her proton therapy treatment in February of 2008. Janet is happy to be living a quiet life in the country, tending to her flowers, spending time working at her church, and enjoying time with her new grandson.

"Chordoma is a rare a very serious form of cancer. I wish I knew from the beginning what my treatment options were,” Janet says. Her long battle would have been much shorter and certainly less complicated. “I wish I had done proton therapy the first time around. I could've been cured in 2005. I'm not a doctor, but I know proton therapy saved my life. I am so thankful to the dedicated staff at the IU Health Proton Therapy Center for giving me a second chance at life. I am truly blessed!”