how to talk about DCIS

Yes.  I know that many individuals on these boards see DCIS as cancer, but like you I also struggle with it, especially on health history forms, or even more important, on annual employee health questionnaires.  I also still have a tendency to say "early stage" breast cancer when talking with people, but then clarify that it's non-invasive and contained in the ducts.  I still feel a kind of twinge when I use the "early stage" terms.  I have been in situations with others who have lost their hair, and I haven't really discussed the specifics of my dx, and I can see that they are wondering what it is that I actually have.  Of course, there are "stage 1" people who also don't have chemo, but it's a little different for them. My biggest supporter is someone who had both IBC and triple negative (and survived a bone marrow transplant).  She is a friend and my dance instructor.  She, definitely sees my situation as pre-cancer, but yet she was right with me when I was nervous about the rads, and she actually found me the surgeon for the last two of my three lumpectomies. So, there is a struggle. 

It would be nice to have some clarity, wouldn't it?

The problem with the idea that if you lose your breast, its cancer is that there are women losing their breasts because they have the BRCA mutation.  This is a hard thing to go through but it is not the same thing as cancer.  Similarly, I did not have a mastectomy but I had node positive cancer, unambiguous.

My opinion is that this should not be an issue for individual women -- what you "feel" you have.  This should be be settled by science, by the medical professionals.  And they've really failed on that one.  My breast surgeon said DCIS is precancer, others will say it is cancer.  And its really difficult when everyone is working from different definitions.  Its no wonder women struggle with this.

My personal opinion is that it isn't a problem to have different names for different things, without diminishing anyone's experience.  There is a reason why many women with mets refer to themselves as having metastatic breast cancer, rather than just breast cancer.  Their experience isn't mine -- emotionally, but more importantly, medically.  Lumping everyone together makes everyone uncomfortable.

So I applaud this move for its clarity.  And I think if they do recategorize things its important for women to flush out for others what it means.  People have to know that even if DCIS isn;t cancer, it is a disease that is scary, and difficult and has its own contours.  (For example, medical decision making is much more difficult for women with DCIS than women like me who pretty much have to do chemo, rads, whatever.)

For me the big problem with the "is DCIS cancer or is DCIS pre-cancer?" discussion is that the medical community lumps all DCIS together.  A small (less than 1cm, for example), single focus of low grade DCIS is not the same disease as a large, multi-focal high grade DCIS with comedonecrosis.  The first condition might never develop into invasive cancer; research seems to suggest that the majority of cases like that will remain DCIS for 20 to 30 years, and quite possibly forever. The risks associated with this condition are a lot closer to ADH than to an aggressive case of DCIS. The second condition is almost certain to develop into invasive cancer; from a risk standpoint this type of diagnosis is probably a lot closer to early stage IDC than it is to a low risk case of DCIS.

So lumping all DCIS together is one problem.  The additional problem is that while we know that size, grade and focality are three factors that are important in determining how threatening a diagnosis of DCIS may be, it is believed that there are other biological factors - as yet undetermined - that likely also play into this.  So at this point we don't have the medical / scientific knowledge to say with certainty which cases of DCIS are low risk, and which are high risk. 

I believe that this is the reason why there is no agreement within the medical community on whether DCIS is a cancer or pre-cancer.  Doctors who focus their attention on how we treat low risk cases of DCIS tend to believe that DCIS should be reclassified as a pre-cancer because these doctors see a lot of what they believe to be "over-treatment". But doctors who focus their attention on the more high risk cases of DCIS tend to believe that DCIS is early stage breast cancer and they worry that women with high risk diagnoses of DCIS might be under-treated if DCIS were to be reclassifed as a pre-cancer.

Personally I hope that at some point in the future, once we have a better idea of what biological factors make a diagnosis of DCIS low risk vs. high risk, a decision can be made to split DCIS into two different diseases, one that is classified as a pre-cancer and is given a new name, and another that remains DCIS and remains Stage 0 Breast Cancer.  We're just not there yet on being able to do this, from the standpoint of our understanding of the biology of DCIS.