DCIS stages > 0

My understanding is that DCIS is stage 0.  As long as the cancer remains in situ, it is stage 0.  I think what may be happening is that some people may have been originally dxed with DCIS, but it subsequently became invasive and they are not changing their dx in their profile.  I was originally dxed with IDC and DCIS with the first lumpectomy I had, but it was just a smidge of invasive - my second lumpectomy was all DCIS.

As the others have said, all pure DCIS is Stage 0.  

DCIS-Mi (DCIS with a microinvasion) is Stage I; the stage is increased because of the presence of the just that tiny amount of invasive cancer.

When patients call DCIS anything other that Stage 0, usually it's out of misunderstanding.  We see that a lot on this board - women who state their diagnosis to be DCIS Stage I, DCIS Stage II, DCIS Stage III and even DCIS Stage IV.  

One thing that I've seen happen is that often women discount the presence of a microinvasion or small amount of invasive cancer (a T1mi or T1a sized tumor).  If someone has several cm of DCIS (I had over 7cm of DCIS) and a just one or few mm of IDC (I had 1mm of IDC), they may feel that the IDC is so small as to be insignificant and they therefore state their diagnosis to be DCIS. Or the pathology report might read "7 cm of grade 3 DCIS, papillary and solid with comedonecrosis present" and it might provide a lot more detail about the DCIS.  Then at the bottom there are 3 words that say "single microinvasion found".  This might not even be seen or register with the patient.  My pathology report simply has a check mark next to the words "Microinvasion present". So the fact that there was a microinvasion might not even be understood.  However if the patient has been told by her doctor that she is Stage I (because of the small amount of invasive cancer), she may say that her diagnosis is DCIS Stage I.  

Something else that happens is that diagnoses sometimes change after the final surgery.  So if someone had DCIS Stage 0 after a biopsy and then invasive cancer is found during the final surgery, they might leave their diagnosis as being DCIS Stage 0 but then talk about chemo treatments (which no one with pure DCIS gets).  Or they might upgrade their stage appropriately, but still state that they have DCIS.  So the diagnosis might be presented as DCIS Stage II.

A third thing that happens is that the cancer includes both DCIS and IDC (approx. 80% - 90% of cases of IDC also include some DCIS).  The pathology report might state "infiltrating ductal carcinoma with the presence of DCIS".  When reading this, it might not be understood that "infiltrating ductal carcinoma" is IDC and so the interpretation might be that the diagnosis is DCIS ("DCIS" has a way of really sticking out on a pathology report). Here again the doctor might tell the patient that they are Stage III so you end up seeing a diagnosis that is reported to be DCIS Stage III.

When the source of the confusion is the doctor, I think in most cases it's a situation where there is some invasive cancer present but the patient didn't pick up on it in the discussion, again because DCIS tends to stick out.  So the doctor may present the correct diagnosis and staging, but it's misinterpreted by the patient.

In rare cases I do suppose that doctors might try to downplay the presence of some invasive cancer and focus on the DCIS, which means that they are in effect misleading the patient, maybe to give the patient peace of mind.  I would hope that this doesn't happen often.

Unfortunately for all the reasons I've noted here (and probably others as well), on this board we see lots of diagnoses of DCIS that are something other than Stage 0.  That always leads to confusion and questions.  

xtine, there are a lot of women on the board in the same situation as you - with lots of DCIS and just a little IDC (I'm one of them).  They understand their diagnosis but unfortunately this website doesn't provide a means to put the accurate diagnosis in our profiles, so they put their diagnosis down as being DCIS Stage I.

Your type of situation probably represents most of the "DCIS Stage I"s that we see on the board but unfortunately there are some where there actually is a misunderstanding of the diagnosis.  It's more obvious of course when it's DCIS Stage II or Stage III (or even Stage IV).  I can think of at least 4 different cases over the years where someone has stated that they went "straight from DCIS to Stage IV". Sometimes the posters have been very insistent that their initial diagnosis was DCIS and a couple have even come to the DCIS forum to provide warnings to all the DCIS women that DCIS can progress directly to mets.  Upon probing, in every case that I'm aware of, the diagnosis never really was DCIS. After a bit of discussion, it comes out that "well, there was a 3mm microinvasion" (3mm is actually a T1a tumor, not a microinvasion) or "my DCIS was invasive" or "When I was diagnosed with DCIS I had chemo and Herceptin" (which obviously means that the diagnosis wasn't DCIS) or something like that.  In one case I recall it required a look back at the pathology report before the individual realized that her initial diagnosis was IDC and not DCIS (and in this case the area of DCIS was more than just a microinvasion).  These are all honest mistakes, but here in the DCIS forum it can cause really major concern particularly among those who are newly diagnosed. 

A request has been put into the Mods - more than once, I think - to change the way that our profiles are set up to allow for the entry of more than one type of BC.  It would be nice if that were done.  It would eliminate a lot of confusion. 

I'm in this group as well, my primary dx was DCIS, I do also have 2 microinvasions but I couldn't figure out how to  make the diagnosis state all that properly!  

I see the name cycle path.  I am interested in cycling. How long have you been a cyclist?  Do you belong to clubs?  How did you get started?

I just had my biopsy done 2 weeks ago and have been diagnosed with DCIS SITU Stage 0. Doc said it was very localized. I'm having a lumpectomy on Wed. and then will be following up with radiation for 6 1/2 weeks. That's the plan so far.

My question is, Will my breast be very noticably lopsided when all is done? This is all so new and this is the first time I've ever been to a site like this.

Is the word Cancer on your mind all the time too?

I'm a little scared of course, but I do have a great support system and feel very blessed for that. But sometimes I just want to scream out, just to scream!

As others so well posted, you can't be stage 0 if there's anything more than DCIS.

I like the way I report my status in my signature. Although my overall treatment plan did not change once the 1.75 mm of IDC was discovered in the lumpectomy pathology report, I did undergo a SNB biopsy (thankfully all good news!) before moving on to rads.

I was diagnosed with DCIS.Non invasive.Tumor was very small 1/2 cm and margins were clear.Stage 0.No chemo or radiation but on tamoxifn.I had one tumor.It was biopsied and cancerous.Then I was scheduled for surgery.As the radiology doctor was marking my tumor for the B surgeon and prepping me for surgery she said I needed to go back on the mammogram.She found another tumor.I was ticked and upset. A shock. After surgery the doctor told my husband about the new tumor.It was benign.What a relief.Went back to see the doctor.Was told everything was good but he would like to do a second surgery to check all margins.I agreed to it.That surgery was scheduled  3 weeks later.2 days before that surgery I was doing a self exam.I thought I felt something but it could be fluid from the first surgery.Don't need to call the doctor I will be in surgery in 2 days.As I was being prepped I told him about the new place and I think it is fluid.He checked and told me "I  will see when I get in there".It was another benign tumor.My doctor called me on a weekend to give me the news.It was about 4 pm on a Saturday.I guess he just got the report and had to call me. What a roller coaster it was for sometime so it took awhile to feel comfortable with my good diagnosis.I was paranoid.What will happen next???? It will be 2 years in July.It is a time when you want your life to speed by.Just get those semi annual and annual mammograms and PRAY for the best.      

I was DCIS STAGE 0, but it took three surgeries to clear the margins and rads.  I am now feeling discomfort in the same breast, and 4 yrs out.  I know I need to call the dr to make an appt. but very afraid.  Mine was a 7.6 which is not small.