News Center

Heads nodded with understanding as Vanessa Spurlock recited a poem she wrote about ascending the mountain of cancer.

“I used to be Just Me.
I thought alive, bold and free.
A journey unprepared,
But one that allowed me to
see the real me.”

Spurlock, who was diagnosed with invasive ductal carcinoma in September 2017, was one of about 50 survivors, caregivers and advocates who spoke about their experiences at the “Shared Decision Making at Critical Points in Long Illness Journey” workshop on June 17.

Co-hosted by VCU Massey Cancer Center and the National Patient Advocate Foundation (NPAF), the workshop aimed to create a dialogue between patients and providers about ways to improve access to equitable, high-quality health care through innovative approaches.

"Miracles of modern medicine are great, but they’re only miracles if they are accessible by everyone,” said Robert A. Winn, M.D., director and Lipman Chair in Oncology at Massey, recently designated a Comprehensive Cancer Center by the National Cancer Institute (NCI).

Gwen Darien, executive vice president of patient advocacy, engagement and education at NPAF, thanked workshop participants for giving a voice to issues that often coincide with a cancer diagnosis.

“You cannot change the system when you don’t understand what individuals are facing,” Darien told them. “We came here to learn from you. This learning and giving and receiving is so important.”

Through breakout discussions, participants identified many of the greatest challenges faced by individuals from the day of diagnosis and going forward.

“Transportation is a huge barrier for us, which is why we have nurse navigators assigned to every Massey patient,” said nurse manager Ashlee Nickens, R.N., M.S.N., O.C.N. “Every patient should get a phone call before they walk into Massey, so we can help to meet your needs even before the first appointment. As you are walking into this journey, your navigator will be there to guide you through it.”

Mary Helen Hackney, M.D., medical director of community oncology, also shared that Massey is currently partnering with other cancer centers to recruit patients for a clinical trial to understand their financial challenges.

“We can't always anticipate your individual needs,” Hackney told the audience, encouraging them to seek guidance on specific challenges from their care team. “Ask your doctor, ask your nurse navigator, ask your social worker and if something changes, ask again.”

During the group discussion, survivors said access to resources including mental health and chaplain services, genetic testing and cardio-oncology can boost overall wellness during and after treatment.

Hikisha Harris, who was diagnosed with triple-negative breast cancer at age 29, discussed fertility preservation and costs with her care team before starting treatment. She encouraged anyone who wants to have a child after cancer to explore their options.

“It is still possible after having chemotherapy and radiation,” said Harris, who is now 10 years cancer-free. “I was scared, but I had my daughter after breast cancer. There is a chance, so don’t lose hope.”

Winn commented on the advances in oncology in recent years leading to a growing number of survivors. According to the NCI, the number of cancer survivors is projected to increase by 24.4%, to 22.5 million, by 2032.

“We need to ask what challenges we still face but also recognize where we have grown,” said Winn. “Too often as a society, we focus on what we don’t have. We need to be energized with what we do have. Today there are more survivors, and the big C word of cancer is not what it used to be, which was a death sentence for many.”

The NPAF will now consider input from the hours-long dialogue for its patient advocacy work to better meet the needs of individuals who have faced cancer or will in the future.

“What I know now is that cancer allowed me to meet people who feel the way I feel,” said Spurlock, reflecting on the day’s conversations. “When you’ve had cancer and they’ve had cancer, you just know how the others feel. I am one of those people who will advocate for patients and survivors all day, every day.”

Written by: Amy Lacey