Cancer Survivor Researches the Disease’s Emotional Impact
by Chris Bryant
When Dr. Margaret “Peg” Lyons talks with cancer patients about the emotional toll the disease takes on their lives, she brings a lot to the discussion. She has more than 20 years’ experience as a hospital nurse, worked for a hospice agency, concentrated in psychiatric mental health nursing while earning her master’s degree and she holds a doctorate in social work.
She’s also survived breast cancer.
So, as a researcher funded by the National Cancer Institute to study the impact breast and cervical cancer has on people’s lives, Lyons knows of what she speaks.
“No matter what you’re doing throughout the day, you are thinking about the fact that you have breast cancer,” said Lyons, an assistant professor in UA’s Capstone College of Nursing, who was diagnosed with breast cancer in 1999. “It invades every aspect of your life. There is difficulty concentrating on things that you need to be concentrating on. Some women have trouble sleeping and for most women, while they don’t meet the criteria for clinical depression, there are depressed days.”
Lyons made a complete recovery. She says her cancer was caught early and had a bright prognosis from the start. She understands others have different prognoses, and she knows hearing cancer is in remission doesn’t always mean things return just as they were.
“What lingers, I think, is always this feeling of ‘will this happen again?’ ”
The UA nursing professor developed and implemented a telephone survey to determine the depression levels and quality of life of 60 breast cancer patients in Alabama’s Black Belt area and in the Mississippi Delta. She completed the research project in two phases and compared responses between these rural women and urban women in the two states. The women were surveyed within six months of their initial diagnosis.
Shock, fear and anxiety were what most respondents cited as describing their emotions upon learning of the cancer, Lyons said. Following the shock and an I-can’t-believe-this-is-happening-to-me reaction, respondents seemed to experience a sense of grief, Lyons said. They begin wondering, Lyons said, “what’s going to happen to my family, what’s going to happen to me and what am I going to do to get this taken care of?”
Respondents indicated that deciding with whom to share the news, and how, was also troubling, Lyons said, and they indicated support from others was desired, but sympathy was not.
Financial costs associated with health care for cancer treatment are burdensome to some. The majority of women interviewed received Medicaid, if not before diagnosis, then after, Lyons said. “But the women who fall through the cracks are the ones who have some insurance and who don’t qualify for Medicaid.” For some, making frequent $5 co-payments associated with their treatment becomes too much to bear.
“Most women believed they were going to be okay. Many of the women will talk about how God is always with them and that he will continue to be with them throughout the whole experience.”
In addition to spirituality, having easily accessible, easily understood information about their condition seemed to help ward off depression, Lyons said.
“People who didn’t have adequate information about their surgery, prior to it, were more depressed.” Conducting the surveys gave Lyons an opportunity to offer some referrals and some advice.
“One of the rewarding things for me was [being] able to—because I am a nurse—answer a lot of their medical questions, which seemed to reduce their anxiety, and I was able to refer them to other services.”
Lyons plans to study the effects of telephone counseling on women newly diagnosed with breast cancer.
“There are so many things that women don’t know. The disadvantage of a telephone intervention is that there is only a voice; there is no face to face. So, that voice needs to be kind and compassionate and knowledgeable. You have to establish trust, that’s your first priority.”
Knowing the person on the other end of the line truly understands what you’re going through can help that priority to be reached.