Post Originally Appeared at UNCLineberger.org

Linda Willey

Chapel Hill holds a special place in Linda Willey’s heart. She grew up in the town, went to Chapel Hill High School and returns as often as she can. And while most of her memories are fond, she also has found that her hometown is a place for care and compassion, particularly for cancer patients.

Willey, in her 60s, now lives in Manteo, North Carolina, in the Outer Banks with her husband, Fletcher. Over the years, she realized the remote location of Dare County was great for those who wanted to get away from the hustle and bustle, but it also lacked services for its residents, particularly quality health care.

Willey saw that struggle first-hand when a friend was diagnosed with kidney cancer in 2007 and couldn’t get to a better-equipped hospital for treatment. “It became my passion to get her to Chapel Hill for treatment and walk her through what it takes to go from the Outer Banks to there for treatment when you don’t have the means to do it,” she said.

That struggle inspired Willey to start Hands of Hope, a program that drew on her familiarity with the UNC hospitals and her desire to improve cancer care for patients in the Outer Banks. The program, which offered rides to UNC hospitals as well as other services, grew in leaps and bounds, and Willey has since passed the reins to new leaders. “It’s like watching your baby grow up,” she said.

Then, two years ago, her passion project was thriving, her friend had recovered from her cancer and things were going well at the insurance agency she runs with her husband, Willey learned she had cancer.

Finding blood in her urine and thinking she had a urinary tract infection, Willey went to urgent care and took a course of antibiotics, but her symptoms persisted. After a trip to Greenville to see a urologist, a scan showed a tumor on her bladder. A biopsy found the tumor was malignant, and Willey immediately knew what her next step would be.

“I said ‘I need a referral to UNC.’ It’s our state hospital, and it’s the people’s hospital,” she said.

“I wanted to go back home for my care”

Over the years, Willey’s connection to Chapel Hill had only deepened, and she had relationships with doctors, researchers and staff members at UNC Lineberger and the North Carolina Cancer Hospital, the cancer center’s clinical home.

“I knew that the chance to participate in clinical trials and take advantage of the research would be in Chapel Hill,” she said. “I wanted to go back home for my care.”

Willey was in good hands with UNC Lineberger’s team of Matthew Milowsky, MD, and Ray Tan, MD. She started chemotherapy, and after four treatments, Milowsky had good news to share; her tumor had shrunk by 75%. Next, Tan surgically removed her bladder and some lymph nodes.

“He told me all about what to expect, and it was scary and as difficult as he told me it was,” she said. “But I got through it. I survived the surgery.”

Helping others through clinical trial participation

Milowsky, the George Gabriel and Frances Gable Villere Distinguished Professor of Bladder and Genitourinary Cancer Research told her they’d removed the cancer they could see, but there was still a chance of recurrence. As a result, her care plan included having a scan every three months. Milowsky also suggested an immunotherapy clinical trial for patients like Willey with high-risk bladder cancer. The trial, designed to decrease the risk of recurrence and improve survival outcomes, would require her to be in Chapel Hill every other week for a year. Willey didn’t hesitate to enroll, despite the 444-mile round trips and the possibility she could be placed on a placebo and not receive the drug, something that impressed her doctor.

“Linda participated in this study understanding that she may be receiving an intravenous placebo treatment every two weeks for a year. In so doing, she clearly articulated her desire to contribute to research to develop better treatments, acknowledging that the study may not benefit her personally. It takes a lot of very special people like Linda to participate in these studies and represents the only way that we can develop better treatments for patients with bladder cancer and other malignancies.” – Matthew Milowsky, MD

Just as she stepped up to help when her friend had cancer, Willey was ready to do the same for other cancer patients by participating in the clinical trial.

“I realized my purpose,” she said. “So much of this was to have the opportunity to try a new drug, to leave the world a little bit better than I found it. I always felt honored and blessed to be able to do it. It’s the icing on the cake for me, of all the things I’ve done to try and be there for other people.”

Paying it forward

Willey said cancer has made her think differently about life, and she finds that she’s a kinder person because of it. She recently renovated a townhouse in Chapel Hill, but due to COVID-19 travel and visitation restrictions, she’s not able to stay in the home and volunteer at the N.C. Cancer Hospital like she’d planned. Instead, Willey has offered her townhome to a former playmate of her son’s, a bone marrow transplant patient and his wife, to use during the duration of his treatment, a timely blessing with SECU Family House closing due to the virus.

“I will come back and volunteer at the hospital. One of the best things during the trial was connecting with other patients,” she said. “I always try to meet new cancer patients, introduce myself. Being a patient is different. I want to come up and talk with others who are going through the same things I went through.”

Willey’s patient experience also reconnected her with several people she’d gotten to know over the years, including Loretta Muss, the N.C. Cancer Hospital Patient & Family Advisory Council coordinator. And as soon as she is able, Willey will join Muss’ Patient and Family Advisory Council to help other cancer patients on their journeys, something she’s looking forward to doing.

“I didn’t know there were so many blessings with cancer, but there are. For me, I feel like I’m a better person for having gone through and experienced what I did. It’s what I tell my friends; you can survive it, you can live with it, be better for it, and you can be OK.”