BS only told me about the IDC and not the DSIC, why?

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raindeer1217
raindeer1217 Member Posts: 90

Hello

I went to see my BS yesterday and the Reconstruction Surgeon yesterday too. After reading the boards most woman had indicated that they have their actual Path Report. So yesterday I asked for mine and found that I have two Carcinoma Sites.  The IDC is about 1.6cm with three smaller tumors, I also have DSIC 4 tumors largest being 1.9cm.

Why would the Dr. not tell me about the DSIC?

Comments

  • indenial
    indenial Member Posts: 504
    edited April 2013

    My BS said the DCIS doesn't really matter because it doesn't affect treatment or outcomes at all. But she still told me it was there... I'm guessing the doc was just trying to spare you any unnecessary worry but why not ask your BS directly why you weren't told? 

    My treatment is based on the largest IDC tumor and my node status, LVI, age, etc. Since DCIS hasn't left the ducts, as long as it's removed, it really doesn't affect your treatment options or prognosis.

    I am going to ask for my path report too I think... I didn't want it at first but now I just want to see it (and make sure there isn't anything I wasn't told!)

  • Jomama2
    Jomama2 Member Posts: 96
    edited April 2013

    I learned there was a small bit of DCIS near my small IDC tumor when I read the path report.  My BS didn't mention it, and I took that to mean that must happen a lot and is not surprising to them. 

  • msShelly
    msShelly Member Posts: 55
    edited April 2013

    raindeer 1217, i also had DCIS which the doctor didn't tell me about.  Mine was not an actual tumor, but was just found on the edges. I didn't get a measurement on it, just the number of slides it was found on.  I think they don't tell us because it is invasive that really matters because DCIS cannot spread to other organs. I also think it is pretty common. My report said that the DCIS was found on the edges of some of the slides. I think there have also been studies that suggest our cancer might have come from the DCIS when DCIS is found alongside the IDC.

    What I did find out is there are some studies that say having DCIS and IDC together is a good thing becuase it could indicate a less aggressive cancer than if you were to have IDC alone in your tumor. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2865763/

    I'm not sure how well this has been studied, but it is a hopeful thing! 

  • msShelly
    msShelly Member Posts: 55
    edited April 2013

    also, i don't know if your insurance covers it, but i sent away for a second pathology review at MD Anderson and they sent me their very own report which made me feel like i had covered my bases and they confirmed the IDC and DCIS.

  • Beesie
    Beesie Member Posts: 12,240
    edited April 2013

    About 80% - 90% of IDC starts off as DCIS. So most women who have IDC also have some DCIS.  If you have both, your diagnosis is considered to be IDC - the DCIS doesn't factor in.  This is because the DCIS is the less serious condition; as long as all the DCIS is surgically removed, whatever treatment you get for the IDC will be more than enough to take care of the DCIS.  Your diagnosis, staging, treatment (beyond surgery) and prognosis is all based only on the IDC.

    When someone tells you that they've been diagnosed with DCIS, that should refer only to pure DCIS, with no IDC component.  This is a different diagnosis, a different stage (all pure DCIS is Stage 0) and it may be treated differently (pure DCIS never warrants chemo, for example).

    It's pretty common that women aren't told about having a DCIS component along with their IDC - often they don't find out about it until they read the pathology report.

    Hope that helps.

  • Outfield
    Outfield Member Posts: 1,109
    edited April 2013

    Just to add a little to what Beesie said.

    If you have IDC, DCIS basically doesn't matter unless it's in an area that would not otherwise be involved in the surgery for the IDC.  For example, if you had DCIS in the other breast, or if you wanted a lumpectomy for the IDC and had DCIS in other parts of the same breast.  

    Not to say that DCIS is not a big diagnosis for a woman to deal with, but medically the prognosis is so much better than IDC that it won't be part of the discussion except for the surgical part someone has both.  Sounds like you are planning a mastectomy, and the DCIS is on the same side as the IDC, so its presence won't change your prognosis or treatment plan at all.   

  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2013

    It's interesting, I always forget that I had some DCIS as well, and yes you are right, it never gets brought up.

  • dltnhm
    dltnhm Member Posts: 873
    edited April 2013

    Everything that has been shared with you above regarding IDC basically trumping the DCIS as far as treatment is correct.

    However ... the presence of DCIS and IDC was discussed with me following my initial core needle biopsy pathology, when I met with the surgeon after that biopsy and also after my umx pathology.

    Just my experience.

    Diana

  • Susie123
    Susie123 Member Posts: 804
    edited April 2013

    I too had dcis as well as idc. My bs didn't mention the dcis after the biopsy, only the idc.

    IDC is invasive, dcis is not, so the IDC becomes the concern. It's like going to the ER with 2 cuts on your leg, one small scratch and one a huge gash that requires 20 stitches. The ER staff is going to focus on the huge gash. As someone mentioned above, most IDC starts out as dcis, confined to the ducts and hasn't broken out and became invasive yet so it can't spread to other parts of your body. Once it breaks out of the ducts it becomes IDC and has the potential to spread, that's why it becomes the primary concern.

  • raindeer1217
    raindeer1217 Member Posts: 90
    edited April 2013

    Thank you everyone for replying. It makes sense why my Dr. Didn't tell me.  Focus on the major problem at hand. 1st and foremost.. get this out of my body!

  • proudtospin
    proudtospin Member Posts: 5,972
    edited April 2013

    and Rain, you will get it out of your body!

    spoken as someone almost 5 years out of the DCIs junk

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