Is Stage Zero breast cancer really cancer? 7 ON YOUR SIDE investigates the controversy
The word cancer strikes fear into Americans with good reason. Last year, nearly 1.7 million people in the US were diagnosed with it.
But there is an increasingly loud conversation among some doctors and patients questioning certain diagnoses and the aggressive treatments that often follow.
48-year-old former breast cancer patient, Donna Pinto, is one of them.
"I despise being called a survivor because I'm not. If anything, I'm a survivor of the medical system that lied to me and intimidated me and bullied me."
We sat down with Pinto on a sunny afternoon in her San Diego home. Surrounded by photos of her hiking mountains and running marathons she prepared organic green smoothies and explained how a routine mammogram led to a diagnosis of DCIS: Ductal Carcinoma In-Situ, or "Stage Zero" breast cancer.
"It's a very confusing thing. Zero is zero," said Pinto.
60,000 women a year are diagnosed with stage zero breast cancer, accounting for 25% of all breast cancer diagnoses.
But some doctors now question whether it should be called cancer at all, suggesting these abnormal cells in the lining of the breast duct are unlikely to harm most patients.
But women often report a rush to radical surgery and radiation.
"I've been over-treated, I've been over-diagnosed, I've been over-scared," said Pinto.
She says within a matter of minutes of her diagnosis "urgent" was stamped on her file, and she was offered a mastectomy or a partial mastectomy, plus seven weeks of daily radiation.
"I was just like, wait a minute, this is like a stage zero. You just said it was pre-cancer, and it's really not invasive cancer but you're telling me mastectomy or radiation, this doesn't make sense," said Pinto.
Dr. Gilbert Welch is a professor of medicine at Dartmouth and author of numerous books including "Less Medicine, More Health" and "Over-Diagnosed: Making People Sick in the Pursuit of Health." He is one of the leading voices urging that aggressive protocols for stage zero cancer lead to over-diagnosis and over-treatment.
"We've been conditioned to think that once you have a diagnosis of cancer you must act fast. And that's not right," said Welch.
He says the widespread push for early detection has had little role in the decline in the breast cancer death rate but can lead to unnecessary and often radical treatment for tens of thousands of women a year, leading them to think they're sicker than they actually are.
"Our current, typical treatment for stage zero breast cancer is nearly as aggressive as it is, and may be even more aggressive, than for early stage invasive breast cancer. I would argue for most women it probably doesn't need to be treated."
A top Washington, DC radiologist disagrees.
"So raise your hand if you're the one who's willing to die?" Dr Rachel Brem asked, as we talked inside her office at George Washington University Hospital, where she leads the GW Comprehensive Breast Center.
"We know that some DCIS, if left alone, will never become a killer cancer. But the problem is that we don't know which ones," said Brem.
It's that risk equation that initially convinced Pinto to have three surgeries - including a partial mastectomy that deformed her right breast.
"We're not telling women there are harms, severe harms. Radiation, drugs, years of anguish and then they give you anxiety medications. Why are these treatments still happening when all this information is out there?"
Some suspect one reason for aggressive treatment protocols nationwide may be the amount of money involved.
In 2015, a study in the peer-reviewed health policy journal, "Health Affairs," found that false-positive mammograms and breast cancer over-diagnosis account for $4 billion dollars in spending every year.
"There is absolutely money in screening. I think there's some people who genuinely believe early detection is always the best way to go, but at the same time, there's a lot of money on the table here," said Welch.
Welch says the money-factor is not as much about individual physicians, as it is the giant networks and manufacturers. "It's more for health care systems and the producers of tests where it really becomes a good way to bring in new patients," said Welch. "In other words, you're out in the population looking for early forms of disease as a way to recruit new patients."
When confronted with the prospect of stage zero diagnoses being driven by the bottom line, Dr Rachel Brem was quick to respond. "What's the cost of years lost, financial loss, loss to a family of losing a woman in her 40's, 50's and 60's? So we're seeing one side of it. There's no doubt that if we don't' treat DCIS some women will lose their lives as a result of the lost opportunity of finding an early curable breast cancer."
But the number of women is difficult to quantify. There are no studies yet that show women who are treated for stage zero breast cancer are less likely to die of cancer than those who do not get treated. In the absence of those studies, Brem opts for aggressive protocols.
"We're waiting for the data," said Brem. "We are obligated as physicians and as scientists to practice evidence-based medicine and we don't have the data for that."
Both Brem and Welch agree that women must be informed.
"Take. Your. Time." said Welch. "There is not a rush. They should learn about some of the debates out there and decide what they really want to do. They should talk to more than one physician."
As for Pinto, she says it's her mission is to make sure women being diagnosed hear the whole story before deciding what's best for them.
"Give us the facts. Give us the truth and let us make the decision."