Priscilla Windsor was swimming with her two sons on a warm summer day in 2019 when she felt pain with each stroke of her right arm. Then Priscilla, 47, started struggling with basic tasks around the house, like lifting a jug of milk into the refrigerator or grabbing the laundry detergent off the shelf. She was referred to sports medicine specialist Eric Warren, M.D., with Atrium Health Musculoskeletal Institute. Dr. Warren thought Priscilla had a condition called “frozen shoulder,” which is common in women in their 40s. But six weeks of physical therapy didn’t relieve the pain, so Dr. Warren sent Priscilla for an MRI, which showed she had a growth on her scapula, or shoulder blade.
Priscilla was then referred to Joshua Patt, M.D., an orthopedic surgeon at Atrium Health Levine Cancer Institute and the vice chair of education for Atrium Health Musculoskeletal Institute, who ordered a biopsy of the mass. The diagnosis was daunting: It was a 10-centimeter malignant tumor. Dr. Patt knew he had to remove the tumor so he could determine the best treatment path for Priscilla. “It wasn't clear whether it was a soft-tissue tumor invading into the bone, or a bone tumor extending out into the soft tissues,” says Dr. Patt, who specializes in rare and complex sarcomas. Patients with soft-tissue sarcomas typically receive radiation, but not always chemotherapy, while those with bone sarcomas often require chemotherapy, but not radiation, he explains. So determining the tissue of origin was centrally important to providing the best treatment strategy for Priscilla.
Patients who were diagnosed with shoulder sarcomas 30 years ago typically had to undergo total arm amputations “from their chest wall to their fingertips,” Dr. Patt says. But thanks to cutting-edge techniques developed in recent years, Dr. Patt’s team was able to remove 90% of Priscilla’s scapula and preserve her arm in a procedure known as a scapulectomy.
“We were able to save some of her deltoid muscle and the tissue that attaches it to the shoulder,” Dr. Patt says. “We then reconstructed her biceps tendon, attaching it to her collar bone, to give her some elbow flexion and shoulder stabilization.”
The operation, which took place in December 2019, took about six hours, he says.
Benefiting from Integrated Care
After Dr. Patt removed Priscilla’s tumor, he confirmed it was sarcoma of the bone. He assembled a team of Atrium Health physicians, who worked together to come up with an integrated treatment plan. Priscilla received six courses of the chemotherapy combination cisplatin plus adriamycin under the guidance of Michael Livingston, M.D. at LCI. She also had occupational and physical therapy to maximize her use of her arm and shoulder. During her treatment, LCI provided her with access to skilled providers to help with everything from pain management to the financial aspects of her care. And physical therapist Joanna Langford continues to work with Priscilla to help manage some lingering neuropathy and balance issues.
“This shows how patients can really benefit from the integrated and comprehensive services of our cancer center,” Dr. Patt says.
Today Priscilla is cancer-free, and while she doesn’t have full range-of-motion in her right arm, she has regained enough function to be able to perform basic tasks around the house—and to return to the pool. “The water helps me to hold my shoulder up, and then I can move my arms to swim. I enjoy swimming for exercise. Being in the water is the time I feel the most whole,” says Priscilla, who is married and mom to a 19-year-old daughter and her sons, ages 17 and 13.
Priscilla still has some shoulder pain, but she keeps it under control with the help of massage therapy and acupuncture, she says. And she credits psychologist Sarah Galloway, Ph.D., of Atrium Health Levine Cancer Institute’s Supportive Oncology Clinic, with helping her get through the tough patches, including one three-month stretch when her oncologists were watching a suspicious spot that showed up in a follow-up scan but turned out to be benign. “Getting through the anxiety of those three months, it gave me peace just to be able to talk it through,” Priscilla says.
The expertise needed to perform complex sarcoma surgery is hard to find, so patients come from all over the southeast to tap into the expertise of Dr. Patt and his colleagues. LCI saw almost 600 new patients for bone and soft tissue tumors last year, up from 342 in 2018, according to Dr. Patt.
Patients Helping Patients
Levine Cancer Institute (LCI) cancer patients also benefit from a longstanding partnership with the Paula Takacs Foundation for Sarcoma Research, which was founded in 2010 with the mission of funding research at LCI and Atrium Health Levine Children’s Hospital. The financial support that the foundation provides is allowing LCI’s researchers to make important discoveries that will lead to better detection and treatment of sarcomas—both for adults and children.
What’s more, the foundation – who nurtures an important and large network of families impacted by sarcoma diagnoses – has witnessed the growth of friendship and support connections that have formed between families, patients, survivors, and caregivers. This community has offered strength and hope for people going through rigorous treatment protocols, ferried them through their grief, and celebrated survival. This all comes together at the Paula Takacs Foundation’s annual Sarcoma Stomp walk/run, held on Saturday, April 23, 2022 where over 50 honorary teams will be joyously “stomping” alongside care teams from LCI and Levine Children’s.
“I think that this is a good example of how important one patient can be,” Dr. Patt says. “The Paula Takacs Foundation really helps us create a sense of community around sarcoma in the Charlotte region and to create this incredible sense of support for patients that goes beyond what we can do surgically or medically.”
Now Priscilla is joining that army of volunteers. She recently signed on to be a peer counselor to a mechanic who needed a complex surgery similar to the one she had. Priscilla provided comfort to the patient, who was frightened he might lose his ability to work. “I got on speaker phone with him and his wife and said ‘Hey, you can do this. It won’t be easy, but you have so much to live for,’” Priscilla recalls. She also shared videos of her physical therapy sessions with the patient, who ultimately decided to go ahead with the surgery in mid-April.
As for Priscilla, she undergoes follow-up scans every three months, and they continue to show no evidence of her cancer—a testament to the quality of the integrated care she received at LCI, she says. “I’m just so grateful. I’ve been given the gift of time.”
