In a room with a half-dozen women who fought breast cancer at an early age, the dark turn in Rhonda Fleischauer’s story brings a stunned silence.
She was first diagnosed with breast cancer at age 38 when she was pregnant with her son, Trevor, now 7 years old. Exactly five years after her first bout, the cancer reappeared in a different part of her body.
“It came back bone cancer,” she said, barely holding back a sob. “So now it is in my spine.”
In women younger than 40, the incidence of advanced breast cancer is increasing and appears to be accelerating, according to a study published today in the Journal of the American Medical Association.
Researchers looked at cancer incidence data from 1976 through 2009 and found a trend toward increasing advanced breast cancer in patients ages 25 through 39. The incidence of advanced breast cancer in that age group was 1.53 per 100,000 people in 1976 and 2.9 in 2009. The increase from year to year became larger from 2000 to 2009.
There was no similar increase for other age groups or earlier stages of breast cancer, the study found.
The increase is greatest among women with estrogen-sensitive cancers, the study found, but the study does not identify a potential cause. A 2007 study among women in Switzerland found an increase in women ages 25-39 for all breast cancers but also did not point to a cause.
“To make a long story short, we couldn’t find a single explanation for the trend,” said Dr. Rebecca H. Johnson, the medical director of the adolescent and young adult oncology program at Seattle Children’s Hospital and an assistant professor of pediatrics at the University of Washington School of Medicine.
The trend raises questions about whether it is the result of a delay in care or whether there is something different biologically about the cancers that make them more aggressive so that they are already advanced by the time of diagnosis, she said.
“We know that young adults as a group are the least likely to have health insurance of all age groups,” said Johnson, who was diagnosed with breast cancer at 27. “And that delayed diagnosis for adolescents and young adults spanning many types of cancer is an issue.”
Even when young patients do find something suspicious, she said, they might not consider themselves at risk for cancer and their physicians might tell them that, too. More research is needed on the trend and potential causes, Johnson said, but the study could provide “a message of awareness that young women should know that cancer could happen to them, even if they are young. And that they should go in promptly for medical care if changes in their body occur.”
The results make sense to Pam Anderson, the program coordinator for cancer services at University Hospital, who also is a hands-on advocate and resource for breast cancer patients at the hospital’s Breast Health Center.
“I said that this morning, ‘I don’t know what the statistics are but why are we seeing all of these young women?’ ” she said.
In at least the majority of University’s cases, it is not because of a mutation in one of the BRCA genes that have been associated with early-onset breast cancer.
“Anyone under 50 we do genetic testing on,” Anderson said. “And it’s pretty rare you see a positive, which is sort of the exact opposite of what you think. They’re 25, 30 years old, it must be a BRCA – positive. And they’re not.”
She is at a loss to find a pattern among the patients.
“I don’t see anything in common,” Anderson said. “Anything that is striking at least. You think it’s genetic and it’s not.”
The increase in patients younger than 40 at University prompted Anderson and young breast cancer patient Mona Pinnington to form a support group for younger breast cancer patients. About a half-dozen, ranging in age at diagnosis from 24 to 42, got together to share their experiences. Many of them have young children.
Ashley Horne, 25, who used to have long blond hair, is wearing a short brown wig.
“I don’t want my kids pulling off my wig, so I’ve got it short,” said Horne, who has had chemotherapy and is about to start radiation. Allison Broome-Jones, who was 24 and had all three of her children after she was diagnosed, recommends a children’s book to Fleischauer for explaining the situation to her son.
“It was very helpful for my small children,” she said.
They talk about how different they feel when they show up at the chemotherapy infusion room and look around at the other patients.
“I was the youngest by at least 20 years,” Broome-Jones said.
“We have our tablets and things and they all have their crossword books,” Horne said.
The women have their own theories as to why breast cancer might be on the rise. “I think it’s the hormones,” Horne said, and the constant use of birth control.
Others say they didn’t use birth control and got cancer anyway.
“There’s probably not one answer,” Anderson said.
Whatever the reason for her cancer and its return, Fleischauer said she has renewed faith to keep her going.
“I get up every day and say, ‘This is the day the Lord has made. I’m going to rejoice and be glad in it,’ ” she said, citing Psalms 118. “I don’t know any other way to live.”