Three days of presentations and panel discussions all focused on one recurring theme:
I felt like I was in patient advocate heaven.
Suzannah Fox, former Chief Technology Officer of the U.S. Department of Health and Human Services, led the audience through “The Natural History of a New Idea,” also known as Crazy. Crazy Crazy. Obvious.
- Outright wacko.
“This is worthless nonsense.”
- Odd but unproven.
“This is an interesting, but perverse, point of view.”
- True but trivial.
“This may be correct, but it is quite unimportant.”
“What’s new? This is what we’ve said all along.”
I smiled… thinking about how this related to my personal experiences with DCIS.
“Cancer is cancer!” women argued.
“Less is more” — even for low-risk DCIS — was often labeled “controversial” in the media.
But newer research began to tell a different story.
It became obvious that not all DCIS is the same — and maybe not all DCIS needed to be aggressively treated.
“Studies have shown 70-80% of DCIS may never become invasive breast cancer even when DCIS is left untreated. Many breast cancer doctors and researchers now believe that low-risk DCIS is being over-treated. They also suggest that these women may have the same excellent outcomes with close monitoring, also known as “active surveillance.”
PCORI awards $13.4 million in funding for The Comet Study, the first randomized clinical trial in the U.S. to compare “active surveillance” to surgery for low-risk DCIS.
This funding allows researchers, patients, physicians, and advocates to work together towards finding the scientific answers needed about low-risk DCIS.
Researchers are tackling the question…
“When is cancer not really cancer?
The goal is to find out whether bio-markers can accurately and reliably distinguish between women with DCIS who will likely develop breast cancer and should be treated, and those who can safely avoid treatment and life-long side effects.
(PCORI) is a nonprofit organization authorized by Congress to fund studies that help patients and those who care for them make better-informed healthcare choices.
Check out PCORI’s Research Done Differently