Helping women to face the diagnosis of an aggressive but treatable form of breast cancer has proven difficult because of the negative images swirling around this particular form of the disease. The answer might be a computer avatar named Linda.
Dr. Lisa C. Richardson, director of the Centers for Disease Control and Prevention Division of Cancer Prevention and Control, spoke Thursday at Augusta University. Last year, she was lead author of a study that looked at the differences between black and white women in getting breast cancer and dying from it in the years between 1999 and 2014. Traditionally black women have had a lower rate of getting breast cancer, but as the number of cases have declined in white women in recent years there have been increases in breast cancer cases among black women, particularly for those ages 60-79, so that the rates are roughly equal now.
Unfortunately, Richardson sees that trend continuing for black women.
“All black women, I predict, in the next few years are going to have a higher incidence of breast cancer at all ages,” she said. “A lot of that is due to the fact that breast cancer incidence is going down in white women but it is not budging in black women. The differences increase because of that.”
While treatment has improved and death rates from breast cancer have declined overall, they are declining faster in white women and black women have a 41 percent higher death rate, according to the study. Part of the problem may be that black women are more likely to get what is referred to as “triple negative” breast cancer, where their tumors lack receptors for estrogen, progesterone and are negative for the HER-2 gene overexpression, all of which provide targets for more specific therapies. The outcomes for those cancers tend to be worse but they can still be treated and Richardson is afraid that message isn’t getting out there.
“Everything we see in the media or anywhere else says it is a deadly thing and you are not going to survive.” she said. “It just scares people and that paralyzes women to the point of doing nothing.”
And the message Richardson wants to get out is that the opposite is true.
“It’s not a hopeless cancer,” she said. “We do have treatment and the treatments are effective but you have to know they are available and then have access to them. Even in triple negative breast cancer, most women survive. I don’t think that message gets all the way through.”
Part of the solution might be changing the way people get their information about it. Richardson has been working with a company on creating an avatar called Linda. On the screen she appears as a pleasant looking woman who is a triple-negative breast cancer survivor.
“Linda is basically your best friend or your sister or your grandmother but someone who has been through it and can talk to you in plain language about what it is going to be like,” Richardson said. “She basically walks you through it. She says, ‘Yeah, I’ve had triple negative breast cancer and I got through to the other side of this thing.’ This is a tool to empower patients to know what is going on and ask questions, and also a non-threatening way to get your questions answered. She’s like a real person when you do it.”
They are still working on it and hope to roll it out to wider distribution in March or April but so far the reviews from patients have been “very positive,” she said. “I think we have to use different ways of educating, rather than pamphlets and using big words that nobody understands. It’s a challenge.”
There is also a need to educate the public in general that chemotherapy has changed and there are effective treatments, such as anti-nausea medication, for many of the well-known side effects, Richardson said.
“But everybody remembers their aunt, their grandma, their grandfather, where it was just a horrible thing,” she said. That, too, is an outdated notion, Richardson said.
Reach Tom Corwin at (706) 823-3213 or firstname.lastname@example.org