DCIS - Stage 2? Stage 3? Isn't that impossible?

Yes, that is impossible! I think many people are confused about their dxs. Maybe they mean Grade instead of Stage. Or they have some IDC and just don't list it.???

Pure DCIS is always Stage 0.

I think it's easy for people to be confused in the beginning, they might have been told it was DCIS, then had a lumpectomy and IDC was found too. x

April, this is one of my big frustrations, because it leads to so much confusion among women who really do have pure DCIS, which is, of course, always Stage 0. There are a lot of women on this board who state their diagnosis to be DCIS when in fact their diagnosis includes a combination of DCIS + IDC. And yes, this includes some women who have been here for years. 

I can't count the number of times I've seen "DCIS Stage I" written as someone's diagnosis, or even Stage II or Stage III.  Or someone might write that they have "invasive DCIS".  Or they say that they have DCIS and have positive nodes (having positive nodes automatically changes your diagnosis from Stage 0 and even if no invasive cancer is found in the breast, it is assumed that some was there). None of those diagnoses actually exist.  Pure DCIS is always Stage 0 and it is never invasive and it never includes positive nodes. That's not a judgement or opinion; that's the actual definition of DCIS. So this means that anyone who is Stage I or higher does not have pure DCIS.  They might have some DCIS along with their IDC, but their stage and diagnosis is based on the IDC.

Then there are the women who say that they progressed directly from DCIS to Stage IV.  Technically this is possible only if there was a missed / occult invasion - in other words, the original diagnosis was a misdiagnosis.  It can happen, but it's extremely rare.  In all my years on this board, I've probably seen at least 30 situations where women have said that this happened; in all but one case, I know from further discussion that it was actually known from the start that there was some invasive cancer present along with the DCIS, or the individual experienced a local (in the breast) invasive recurrence after the initial DCIS diagnosis and it was that invasive cancer that led to the development of mets.

I think what often happens is that someone might have a preliminary diagnosis of DCIS based on a biopsy.  Then some invasive cancer is found during surgery, however the surgeon or oncologist never explains that the diagnosis has changed. This is why we see so many women who state DCIS as being their diagnosis when it's really not.  Most appreciate getting a better understanding if you politely ask a question, but there are some who are completely convinced that they are right. It is hard to tell someone that they misunderstand their own diagnosis and in some cases have misunderstood for years.

I am with you April, I have been scratching my head, and wondering when I read those Dx too.

So glad to have it clarified by Beesie.

I am happy to say that mine remained Pure DCIS after my Mx too. Have to say that I had a SNB at the time too, as a "just in case" measure, and I don't regret that for a moment.

I am so thrilled for you April, and I hope you never have to change your stage either!

Isn't Stage 0 a fairly new classification? My neighbor was dx'd with DCIS around nine years ago, and it was called Stage I.



I seem to recall reading that Stage I used to include DCIS. But to your point I don't think it was ever classified beyond that stage.

Ariom, we had our surgeries the same day! The wait over the Christmas holiday was indeed a challenge. I then had to have a re excision for bigger margins. But even with that hiccup, I will be finished with rads a week from today, and it does feel like the time has flown.

Ariom - I was the day before you guys!  Went back in on the day after Christmas to see how my pathology turned out.   I agree with you that time is flying by now, especially now that I'm done with rads.

Hey Annette, you had to wait month for your surgery too. How hard was that, I went nuts!

gemini, you were lucky to not have to wait too long for yours, but you had to go back, so that was awful for you.

Let's face it, none of it is good, but it's doable, and isn't it great that we can all come here and look back on it now. I know I am different, from the experience, but not in a bad way.

Spring for you two, and Autumn for me!

Take care!

OOOOOHH Yeah, Gemini!

Thank goodnesss for that April!

I could not be happier for you. Those are big margins, so you must be feeling so good!

I wish you all the best for the treatment, hope it is fast and uneventful!