DCIS A Timely Topic__1 Million Women In 2020

Welcome, Arlene.

Are you planning to participate in this community, or are you here to promote your site as a resource? There are already a lot of excellent resources on the BCO site, both within the discussion forum and on the BCO information pages, but the site can always use more experienced members on the discussion board to respond to posts and offer advice to newbies.

To some of your comments:

"... as reported by the National Institute of Health (NIH) State-of-the-Science Conference Statement on Diagnosis and Management of Ductal Carcinoma In Situ (DCIS) September 2009, it is estimated that almost 1,000,000 women in 2020 will be diagnosed with DCIS" 1 million women in 2020 will be diagnosed with DCIS? No. In the U.S. approx. 63,000 women per year are diagnosed with DCIS (as compared to approx. 270,000 cases of invasive breast cancer per year). What the 2009 NIH report said is that by the year 2020, they estimated there would be 1 million women in the U.S. who had at some point had been diagnosed with DCIS. The good part of this news is that almost all of these 1,000,000 women who had been diagnosed with DCIS will still be living.

"in fact there are some trying to remove the "C" from DCIS" I was first diagnosed 14 years ago. This was in discussion back then, and in fact there is less of a drive towards this today than there was about 10 years ago. That said, more of the 'expert' sites now define DCIS as a condition with "abnormal cells" and no longer use the word "cancer" in their definitions.

"Some say it will stay non-invasive, some saying it can become invasive." I am not aware of any reliable source that says that DCIS will stay non-invasive. The debate is about what percent of DCIS cases, if left untreated, will eventually evolve to become invasive cancer. There is no question that some will. But whether it's 25% or 75% , or something in between, is what is unknown. I have an old post somewhere on this site that I could dig up that goes through a lot of this research.

As for how DCIS will be caught, from reading and participating on this site for 14+ years, I don't believe the issue is specific to DCIS. There is a problem with breast cancer screening in that no screening modality is perfect - mammograms, ultrasounds and MRIs all can miss cancers, whether it's DCIS or invasive cancer. Some types of cancers are better seen on one modality vs. another, and for this reason, I don't think it's wise to suggest that any screening modality is ineffective - but they are all less effective than women have been led to believe. Breast density is a huge factor here too. It is also important to understand that while imaging can suggest that something looks like DCIS or looks like invasive cancer, there is no way to actually know what the diagnosis is until the cells are examined under a microscope. In your case, it was only an MRI that found your DCIS. But many if not most others here with DCIS have been diagnosed with a mammogram. And although DCIS often doesn't show up on ultrasounds, some women have come through here who have been diagnosed with DCIS via an ultrasound (that one always surprises me).

As for your biopsy not finding the invasive cancer, this happens in about 20% of cases where there is a needle biopsy finding of DCIS. When the area of DCIS is large and the DCIS is high grade, the risk is higher. For small areas of DCIS that are low grade, the risk is lower. Regardless of whether one has DCIS or invasive cancer, a needle biopsy diagnosis is always subject to change once the final surgical pathology is in. This message is passed along to the newly diagnosed many times a day on this board.

To me the most important thing that anyone newly diagnosed should know is that everyone is different and every diagnosis is different. It's very helpful to read about what happened to someone else and to understand what they did, but we should never expect that the same will happen to us and we should understand that our own testing and treatment path might be different. Breast cancer is not one disease. The same is true for DCIS. A small single focus of low grade DCIS is completely different from a large multi-centric high grade DCIS with comedo-necrosis. The value in this discussion board is that there are so many of us, which means that someone newly diagnosed will discover quickly how diverse our diagnoses and experiences are.

I hope you choose to stay here and contribute the knowledge and experience you've gained with your diagnosis, and join all the other active members of this community.

AMKJustDiagnosed, what are your credentials? Are you a medical researcher at a university? An oncologist? What lab research have you done, what peer-reviewed studies?