Anyone have extensive DCIS in addition to IDC?

chapelhill

I am 41, dealing with a "new primary" 10 years after my first diagnosis.  I desperately need to know if my case is unusual or some of you have presented the same way. 

I am dealing with a new primary cancer 10 years after my first diagnosis.  

 10 years ago I had 1.2 cm of IDC with trace amounts of DCIS - all triple negative and grade 3.  I had a lumpectomy, A/C chemo and radiation.  I found the lump mysefl and it showed up on a mammogram

This time around it was just a thickening/swelling of my other breast.   After a DM they found 7.2 cm of DCIS and 0.9cm of IDC.  Both the DCIS and IDC were triple neg and also grade 3. 

I have been advised to have 4 rounds every three weeks of Taxotere/Cytoxan. And radiation.  The DCIS was just 1mm from my chest wall.  The IDC was surrounded by the DCIS.

I can't get over how much DCIS there was..over 3 inches!!  And last time I had very little  Has this happened to anyone else?  It seemed to come out of nowhere and appeared to grow rapidly.

I want to know if any of you out there had extensive DCIS with your IDC and if so, what treatment you received or if it factored in to your doctors decision for treatment. 

So glad to find this sight and know I'm not alone!!!

Beesie

It's not that uncommon to find an area of invasive cancer within a large area of DCIS.  Usually the amount of invasive cancer is quite small - I had only a 1mm microinvasion of IDC within over 7cm of DCIS - but sometimes the area of IDC can be larger. 

In your case, with 9mm of IDC, your diagnosis (Stage I with a T1b sized tumor) and treatment will be based mostly on the IDC.  DCIS is a less serious condition so whatever is done to address your IDC will be more than adequate to address the DCIS too.  The recommendation for chemo, for example, is based on the fact that you have 9mm of triple negative IDC; DCIS alone never requires chemo.  The main effect of the DCIS is that it does need to be removed.  Given how large your area of DCIS was, if you had not had the mastectomy, there's little doubt that a mastectomy would have been recommended in order to ensure that all the DCIS was removed.  It's also likely that the radiation is being recommended because of the close margins after your mastectomy.  In your case, the close margin happens to be with DCIS but the radiation most certainly would have been required if the close margin was IDC. 

What it comes down to is that other than ensuring that the DCIS cells are fully removed and/or killed off (through the surgery and radiation), you really don't need to think about the DCIS at all.

tibet

Chaplehill,

I had also 3cm DCIS and 10mm IDC in the middle of DCIS. I heard it is quite common to have IDC in the middle of DCIS because DCIS could be the precursor of IDC. In my case, it was like, at time of biopsy they found only high grade DCIS, and they said I should wait 3 more weeks to have a mamography. Then i said no i don't want to wait. So i changed doctor and went directly to mamo and the mamo showed lots of calcification. I scheduled for a mastectomy but the waiting was 3 weeks. 3 weeks later, i had mastectomy and they found 10mm IDC in the middle of DCIS.

I have the feeling, maybe the IDC was developed during that 3 weeks time between biopsy and mastectomy. I am still angry about the hospital that they put me to wait 3 weeks till final mastectomy. Maybe i could have been just DCIS if they operated me right way at time of biopsy.

I had chemo, rads as well because like you, my DCIS was only 1mm away from the skin.

Did you do a genetic testing? Given your age and two times BC, i would do a gene test . Do you have family history ?

TifJ

I too had a 1 cm IDC and .7cm of DCIS. Both were on the upper area of the breast and since they had to be taken out as one unit I opted for a mastectomy as a lumpectomy would have left me with a sinkhole. After surgery they found more dcis in the lower outer area. My treatment is 4 rounds Taxotere/Cytoxin. I have completed three. I will not have radiation. In April I felt nothing, by June I felt the IDC lump. My 2009 mammo didn't even show the DCIS. Just shows you how fast grade 3 tumors and DCIS are!