DCIS confusion/complicated

I am confused as well in trying to understand your situation.  It looks like the first biopsy found atypical ductal hyperplasia (ADH) but no mention of DCIS.  The 2nd and 3rd biopsies were benign.  The imaging suggests DCIS but that diagnosis cannot be made from imaging, only from a biopsy. 

ADH puts you at high risk for cancer but it is not cancer.  It can be difficult to differentiate because ADH and DCIS are similar along the spectrum of changes from normal to cancer cells, as shown in this excerpt from bco.org (DCIS section):  

When a pathologist looks at the tissue removed during the biopsy, he or she determines whether or not any abnormal cells are present. If abnormal cells are present, the pathologist will note how different the cells look compared with normal, healthy breast cells. The image shows the range of possible findings, from normal cells all the way to invasive ductal cancer.

• Normal cells
• Ductal hyperplasia or "overgrowth" means that too many cells are present.
• Atypical ductal hyperplasia means that there are too many cells (hyperplasia) and they are starting to take on an abnormal appearance (atypical or "not typical").
• Ductal carcinoma in situ means that there are too many cells and they have the features of cancer, but they are still confined to the inside of the duct.
• DCIS-MI (DCIS with microinvasion) means that a few of the cancer cells have started to break through the wall of the duct. This is considered to be a slightly more serious form of DCIS.
• Invasive ductal cancer means that the cancer cells have broken beyond the breast duct. The breast cancer is no longer a DCIS but an invasive ductal carcinoma, the most common type of breast cancer.

To make it even more confusing pathologists do not all use uniform definitions for drawing the line between ADH and DCIS.

It sounds like you are getting good attention with "part of the practice family" response.  I would recommend going back to whichever doctor you are most comfortable talking to and going over all the findings again.  Then it might be good to send the biopsy slides to a pathology department at a major NCI-designated Cancer Center for a second opinion on the findings.

edited to add:

It is certainly possible to have ADH and DCIS and benign findings within the same breast.  In fact, most women with DCIS also have some ADH and/or ductal hyperplasia.

I am also confused.  DCIS can ONLY be diagnosed when a pathologist looks at a slide of tissue which was removed in some kind of biopsy or surgery.  It CANNOT be diagnosed through any sort of imaging - not mammo, not ultrasound and not MRI.

MRI can show "areas of concern," areas which might be cancerous.  But those areas still need to be biopsied before anyone knows for certain.

I'm not sure in what sense someone is telling you that MRI can distinguish between DCIS and invasive cancer, and I'd ask for clarification on that.  I think there's some miscommunication happening here.

I don't understand where / when / how you were diagnosed with DCIS in the first place.  I agree with Redsox that you should have your biopsy slides sent to another pathologist for a second opinion on the diagnosis.

ssb:

A stereotactic biopsy removes only a very small amount of tissue.  Since the pathologist is not looking at the entire cancerous area, the "diagnosis" given at that point isn't final.  The main point of the biopsy was to determine whether or not you had a malignant area which needed to be fully removed with more extensive surgery (the lumpectomy).  

The point of the wire placement/lumpectomy was to remove the entire cancerous area. After that surgery the tissue removed is also sent to pathology for analysis, and now they have much more tissue to look at.  

Unfortunately on final (post lumpectomy) pathology, about 15% of women will turn out to have some amount of invasive cancer in addition to the DCIS.  In other words, 1) the small sample removed in the biopsy missed the invasive area and 2) some, but not all, of the DCIS in your breast has already turned invasive.  It seems as if this was the case for you, and that your surgeon did not warn you beforehand that this was a possibility.

Because they've found invasive cancer, they want to check your lymph nodes to determine whether it's spread beyond the breast.  A sentinel lymph node biopsy means they will remove only a very few nodes, the first ones the cancer would go to if it went to any at all, rather than removing a whole bunch of lymph nodes.  To do this they usually inject some sort of dye into your breast and then see where it goes.  I was lucky and had "pure" DCIS, so I didn't go through this part of the process, however many other women here have done so - and they can probably explain it better.

I'm guessing that they have to re-excise the lumpectomy area because there was evidence of cancerous cells close to the edge of the tissue that was removed.  Surgeons want to remove enough tissue so that the edges of what they're removed are all normal (w/no cancerous cells), that's called getting "good" or "clean" margins.  

Part of the problem is that the cancer is invisible to the naked eye (can only be seen under the microscope in the pathology lab), so the surgeon has to guesstimate how much to remove.  There's always a risk in lumpectomy that they won't get enough and will have to go back in again. It seems like your surgeon didn't warn you about that possibility, either.

From what you describe, I think that's what's going on and why.  I truly hope I'm understanding your situation correctly because the last thing you need right now is misinformation from me.  So talk to your doctor, ask questions. Think about getting a second opinion. Get copies of all your reports.  Tell us what they say and we can help you figure out what's going on. 

I'm really, really sorry you're going through this.  The only good news is that there are women on this board who have been in your situation and can help you move through all of it.  And you will get through it.

Best wishes!!!!

I, too, had dcis and idc and am very happy that I chose lumpectomy and rads. Wasn't ready for mx, and am thankful to have been given the choice. Wouldn't pass on the rads, I consider them an excellent insurance policy. But everyone has to make the best decision for their personal cicumstances and risk comfort level.

Oh yes on the ignorance thing. I felt that way as well. I knew about breast cancer, I have a friend who went through this and a co-worker. I was so clueless.  Even after the calcification find, and doctor saying he wanted them out, I was clueless. You google calcifications and it seems so benign. You hear it is good at diagnosing DCIS, so you look up DCIS and it made to be so innocent (and yes, I'm not so ignorant, comparatively...it is) but then your surgeon looks at you and says "I recommend mastectomy".  It is hard to reconcile.  Then you talk to another and another and they all say mastectomy and you go "Huh? I thought mine was the good kind?"  That is when you realize, it is still cancer. You have cancer.  Oh shit.

Best wishes Emaline!