Confused about dx/pathology

Johnnygirl · October 2016

Hi all, I'm hoping someone can clear up my confusion.

My bc history in a nutshell... Found palpable tumor in April 2016. Didn't go to doc until July. (I'm 38 fyi) Had my first mammogram a week later, radiologist recommended immediate breast ultrasound. Radiologist immediately told me he was very concerned - 9 cm tumor - and very likely cancer. Had a biopsy soon after. At first I was told it was IDC but that was soon amended to DCIS (it was explained to me that there were a few random spots of invasive cells within the larger predominately DCIS tumor, but because it was all still within the duct and had not invaded the surrounding tissue it was a DCIS dx). Because of the size of the tumor a mastectomy was the only option. I opted for bilateral largely for cosmetic reasons (I was large busted). I am now almost 3 weeks post op.

I just recently got the full pathology report. I was told that within the tumor there were several foci of invasive ductal carcinoma, grade 1, the largest being 5mm in length.

I guess this didn't really surprise me because of what I was initially told after my biopsy but the more I research, the more confused I get. Did I have DCIS or IDC? Sometimes I think it must be IDC if it's not pure DCIS and other times I think it can't be IDC because it did not invade the surrounding tissue. I'm having a hard time finding info about this online. I see info on DCIS-MI but in my case there was no invasion. Help??

Beesie · October 2016

No wonder you are confused... what your doctor told you is very confusing and actually makes no sense at all. There is no such thing as 'invasive cells' 'within a duct'. If the cells are in the duct, they are DCIS and are non-invasive. Once cells become invasive, they break through the duct and move into the breast tissue. Perhaps in your case the invasive cells were still right by the duct, with no visible spread through the tissue, but that's still invasive cancer and not DCIS.

'Foci of invasive ductal cancer' means there are several small areas of invasion. For the diagnosis to be Stage 0 DCIS, there can be no invasive cancer present at all. For the diagnosis to be Stage I DCIS-Mi, any invasive foci can be no larger than 1mm in size. Since you have one area of invasion that is 5mm in size, it means your diagnosis is Stage I IDC, with a t1a tumor (greater in size than 1mm but no larger than 5mm).

It is very common to have DCIS and IDC together; when that happens, it is the more serious condition, the IDC, that determines the diagnosis and the treatment plan. The image on this page shows how DCIS can develop into and co-exist with IDC: http://www.breastcancer.org/pictures/types/dcis/dc...

I hope that helps clarify your diagnosis.

When will you be seeing a Medical Oncologist? With invasive cancer, it's likely that hormone therapy will be recommended and the MO might want to do an Oncotype test. You may want to post in the Stage I forum to find others with similar small IDC tumors to see if they've had the test done.

Johnnygirl · October 2016

Thank you so much Beesie. I will ask more questions when I see my medical oncologist in 2 weeks. I have been told that I will almost certainly be on hormone therapy and that radiation is a possibility - a call that will be made by the oncologist (so far I have only seen my surgeon post-op). I will have a look at the Stage 1 forum as well.

Thank you!!

Johnnygirl · October 2016

Technical question about listing my diagnosis on my profile in light of this discussion... Do I edit my dx of DCIS to IDC? Or do I add a dx of IDC in addition to the DCIS dx?

Annette47 · October 2016

You can put whatever you want as a diagnosis, but what I would do in your case is to just add the IDC ... since you had such a large area of DCIS, that should “count” for something as well.

Confused about dx/pathology

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