A Road Trip to Nebraska

Road trips are not intimidating for Ellen Forstrom. She loves to travel, often driving around the country in her camper to see new places. Her recent road trip to Nebraska was a little out of the ordinary, however. She drove here to receive treatment at the April Sampson Cancer Center.

A Rare Diagnosis

Ellen lives in northern New Jersey, near New York City. A retired nurse, she was diagnosed with a granulosa cell tumor (GCT) in 2007. A rare form of ovarian cancer, GCTs form in and around the ovaries. The cancer can prove difficult to treat, as has been the case for Ellen. During the 2010s, she had surgery roughly every two years to remove tumors. Eventually, Ellen’s surgeon told her that surgery in that area wasn’t safe anymore.

“I had to find a different way of doing it,” Ellen said.

Ellen has been a member of many cancer support groups over the years, one of which is called “GCT Sisters.” Around five years ago, one of her support group members enlisted hospice care. As a last resort, the woman decided to try one more treatment: high-precision stereotactic radiosurgery. Ellen said this woman is now doing better than she ever has with her cancer. It worked so well that several other women in the group, including Ellen, have sought it out.

However, it proved difficult for them to find a doctor who would treat them. Limited data exists for radiation therapy for these types of tumors, so radiation oncologists would tell Ellen they weren’t willing to take on the perceived risks.

Hitting the Road

Her support group keeps a running list of doctors around the country who may be able to treat them. A Midwest-based group member found Mark Stavas, MD, a radiation oncologist with Cancer Partners of Nebraska. She spoke on the phone with Dr. Stavas several times, describing her situation. He felt that her case was treatable and agreed to see her.

Dr. Stavas had previously treated several women with GCTs using an advanced technique in which he selectively applies radiation to the inner two-thirds of the tumor. This spares the tumor’s outer rim, which is often adjacent to critical organs, and reduces the risk for dangerous side effects.

Ellen packed up her camper and hit the road in September. Her sister and brother-in-law joined her on the trip. It took them a few days to reach Nebraska, where they set up camp at Eugene T. Mahoney State Park.

Two Weeks in Nebraska

On the Monday after they arrived, Ellen went to the cancer center for an evaluation. After taking time to examine her results, Dr. Stavas treated her every day the following week.

Ellen had three tumors that required treatment. Over that week, she traveled to the cancer center for five 20-minute treatment sessions. While receiving treatment, Ellen was struck by the friendliness and efficiency of the entire cancer center staff.

“Everybody was so wonderful and easy to deal with,” she said, “and my appointments ran on time. It wasn’t like I would get stuck there waiting for hours. They were really good about being efficient, but I never felt rushed.”

Ellen spent time in the Garden of Hope and Healing behind the center, walking the pathways before and after treatment. She said the beauty and quiet of the garden provided her with some peace.

During their stay, Ellen and her travel partners also took in a few sights around Nebraska, including the Henry Doorly Zoo and the International Quilt Museum.

Hope for the Future

After her week of treatment, Ellen started the long drive back home. She followed up with Dr. Stavas via phone; he recommended she get a CT scan after three months. Her recent scan showed that the tumors were completely gone.

Dr. Stavas has spoken with physicians across the country about this treatment, sharing his experience and technique so that more women can receive care closer to home.

“Progress in medicine often depends on trailblazers like Ellen - patients willing to explore options far from home and step into uncertainty to advance both outcomes and understanding of rare diseases,” Dr. Stavas said. “I am deeply grateful for Ellen and profoundly humbled by the trust she placed in me and in the entire Cancer Partners of Nebraska team. She has an inner calm to her spirit, and I know she enjoyed the healing energy of the April Sampson Cancer Center.”

Within her support group, members have found that this kind of treatment gave them longer periods of time between recurrence compared to surgery or chemotherapy. Ellen will continue to monitor her symptoms and test frequently for recurrence.

Ellen made a Beyond Expectations gift in Dr. Stavas’ name to the Bryan Foundation to support the oncology caring fund for patients traveling to the center. Traveling and extended stays for patients like Ellen can be a huge financial burden. Oncology nurse navigators and social workers can use these funds to help address those challenges during a patient’s treatment.

“I just want to help anybody else who needs to travel to spend some time at the center and afford treatment,” she said. “Coming from a distance is not always so easy for some people, and to be able to help them out with some of their expenses is just a pleasure.”

Ellen has camped all her life, so this trip was not a new experience for her outside of the reason for it. She had driven through Nebraska before but had not spent extensive time here. Now, a state that didn’t hold much meaning for her will forever be important.

“Where I live, you drive through all kinds of traffic to get where you need to go,” she said. “In Nebraska, we drove down to the cancer center, and it was just such a lovely ride out there. It’s such a pretty campus right by the cornfields.

“It all went so smoothly and, all things considered, was really a very pleasant experience.”

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