Connie Schneider was too busy to deal with the excruciating back pain that struck her last December when she was working full time as a certified financial planner and caring for her mother with dementia.
When her mother died in January 2020, Connie was unable to bend into a sitting position, so she rode to the funeral lying down in the back seat of her husband’s pickup truck. Determined to the core, she refused to let pain keep her down.
“I greeted family and friends and spoke at the funeral,” says Connie, 62, an avid hiker who leads a healthy lifestyle. “And you wouldn’t have known there was anything wrong with me. I can step up to the plate and do what needs to be done.”
And Connie did know what she had to do next. She needed to take care of herself. Although she always avoided doctors and never took medications, Connie realized something was wrong and it was time to get help.
The search for answers led her on a circuitous journey involving numerous doctors, unsuccessful injections for pain and finally a biopsy at a local hospital. Physicians there found abnormal cells suggesting cancer, but they were unable to treat her.
“I was shocked. Never in my wildest dreams would I think I would have cancer,” Connie says.
Connie’s efforts to get treated led her to The Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, where she was diagnosed with sarcoma, a broad group of cancers that begin in the bones and soft tissues. These are relatively uncommon tumors, accounting for only 1 percent of all malignancies. Approximately 17,000 cases of sarcomas occur per year in the United States.
Although sarcomas may be unusual in the general population, they are not foreign to the Siteman oncologists, who have strong expertise in treating this virulent form of cancer and other rare tumors.
Connie’s oncologist is Brian Van Tine, MD, sarcoma program director and assistant professor, Division of Medical Oncology, Washington University School of Medicine. Thanks to generous donors, The Foundation for Barnes-Jewish Hospital provides support to Dr. Van Tine’s research.
“Donor support makes all the difference in the world,” he says. “We don’t really feel we’re here to just treat the cancer, we’re here to transform the treatment.”
He explains that Siteman has a world-class rare tumor program that includes two labs doing research that leads to clinical trials for patients. Gifts from donors make it possible for scientists to buy the compounds needed to do testing and create the models for the next generation of lifesaving clinical trials.
“Without philanthropic support, we’re limited to how quickly we can move forward toward cures,” he says. “We have lots and lots of great ideas but we need the money to actually test them.”
For example, Dr. Van Tine says that his research involves identifying metabolic deficiencies in sarcomas that can be used as therapeutic opportunities. Since healthy cells don’t have this weakness, his team has been trying to create a therapy to take advantage of this defect in order to starve the tumor cells.
In Connie’s case, this type of research coupled with the depth of experience at Siteman are a necessity. Dr. Van Tine explains that Connie has Ewing’s sarcoma, which is primarily a pediatric disease. While it might be unusual to find an adult with this form of cancer at other centers, it is not unique for Dr. Van Tine, who has treated patients from across the country. In fact, his oldest Ewing’s sarcoma patient is 75.
While outcomes are generally good for pediatric patients with the disease, Dr. Van Tine explains that it can be difficult for adults to tolerate the chemotherapy treatments and some are unable to complete the regimen needed to recover.
Connie began chemotherapy on March 4 and after four rounds, the tumors shrank dramatically. She then had 33 rounds of radiation between June 9 and July 21. After taking about a month off, she resumed chemotherapy in late August and hopes to complete 13 more rounds.
Although the treatments have been grueling, Connie says she loves helping clients with investments and retirement plans so she is continuing to work part time, taking off when necessary. As for exercising, she says: “I do work out most mornings to help keep me moving and to keep my strength up. It is not even close to what I am used to. But it really helps.” Both Dr. Van Tine and Connie are very optimistic that she will be able to complete the program and have a highly successful outcome. “The more fit you are, the better you tolerate it,” Dr. Van Tine says. “The fact that Connie was healthy in the first place helps her to do better.”
He also cites her determination and positive attitude. “She’s an amazing woman,” he says. “She understands as much as she can about what she’s getting into in each component. She does her own research and we work together as a team to get her through it.”
Connie thinks Dr. Van Tine is pretty amazing too, and donates to his sarcoma research through the Foundation. “He’s very direct just like me. I trusted him from the moment I met him. I’ve never been scared,” she says. “I love the man. He’s so smart and so kind and just so caring.” She recalls showing Dr. Van Tine a photo of herself with husband Ken while hiking in the mountains. “I told him I want to do that again and he said ‘you will.’ And I believe him.”
If you would like to donate to cancer research to help patients like Connie, visit us at FoundationBarnesJewish.org.