Dcis

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peg1212
peg1212 Member Posts: 48

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  • peg1212
    peg1212 Member Posts: 48
    edited December 2007

    I was diagnosed with Infiltrating Duct Carsinoma grade 1 0.2 cm and extensive ductal carcinoma in situ nuclear grade 2 with extensive comedonecrosis and calcification.  On Dec.20 i had a total masectomy with reconstruction they tested lymphnode and in the hospital at time of surgery it came back neg so they still tested it somewhere else and it came back positive and now im going back in on the 10th of January to have more removed and tested.  Just going crazy has anyone else had any experiences with this?

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2007

    Peg, unfortunately what you've experienced does happen quite a bit.  The testing that is done while you are in surgery is a quick, preliminary test.  If cancer shows up, the doctor can immediately remove more lymph nodes.  But if cancer doesn't show up, while that's a good sign, it doesn't mean that the lymph node is cancer-free.  Additional testing at a much finer level (thin thin slices of the tissue viewed under the microscope) will always be done later.  So it's very possible that if there is only a small amount of cancer in the lymph node, it may not be found during the first check, but will only be found later.  That's happened to lots of women and that's what's happened to you.

    One other thing.  It sounds as though you have two types of cancer - extensive DCIS (ductal carcinoma in situ) and a small amount of IDC (infiltrating (or invasive) ductal carcinoma).  It's very common to have both together - I did.   I had a whole breast full of high grade DCIS but only a 0.1cm microinvasion of IDC.  Still, because IDC is the more serious condition, your diagnosis & treatment is based on the IDC.  This is because DCIS cannot spread outside of the breast, whereas IDC can.  So your lymph node invasion was not caused by the DCIS, even though you had so much of it, but by that small amount of IDC.  

    Hope that helps!  And here's hoping that no more cancer in found in your nodes.  If it turns out to only be a tiny amount, that might not have a big impact on your treatment.   Good luck!

  • peg1212
    peg1212 Member Posts: 48
    edited December 2007

    Beesie thank you so much you explained it just as well as my surgeron.  You sure did make me fell better and its nice to know that their are others who understand because my family sure does'nt and I don't have anyone else to talk to.  Im sure glad i found this place. Thank You

  • louishenry
    louishenry Member Posts: 417
    edited December 2007

    Hi Beesie. I'm not sure of something. If DCIS cannot spread beyond the breast, then why are some cases 30% dcis, rest IDC, for example? Doesn't the IDC follow the DCIS? Does micro-invasion ever start from grade 1 or 2 non-comedo DCIS? I'm second guessing my treatment...no rads, low to intermediate micropapillary, cribriform. Sometimes I wonder if I should have had rads, just to be on the safe side.

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2007

    It's a good question and it can be really confusing.  Here's how it works:

    DCIS cancer cells are contained within the milk ducts.  The milk ducts hold the cells in place within the breast.  So DCIS cannot spread beyond the breast.  But there are two things that DCIS can do. 

    • One is to spread within the ductal system of the breast.  This is why many of us are diagnosed with widespread areas of DCIS.  All the cancer cells are safely contained within the milk ducts, but much of the ductal system within the breast is affected.  This is the reason why a lot of women with DCIS require mastectomies - there's simply too much DCIS to remove with a lumpectomy.  
    • The second thing that DCIS can do is become IDC.  As soon as a single cell of DCIS breaks through the wall of the milk duct and moves into the breast tissue, it is no longer DCIS.  Now this same cancer cell has become IDC, and this changes the diagnosis.  Once a patient has IDC, further invasion is a possibililty.  

    This is why it's so important to catch and treat DCIS while it's all still DCIS.  If it's completely removed at that point, it's 100% curable.  But if it's not caught until after the cells have started to break through the ducts, the risks are higher.  And that's why even the tiniest amount of microinvasion changes one's staging from Stage 0 (DCIS) to Stage 1 (IDC).  This is really not well understood.  Many women believe, and may even be told by their doctors, that they are "DCIS Stage 0 with a microinvasion".   Then, if they're found to have invasion into the lymph nodes, they think it was the DCIS that caused the invasion.  But in fact they were never Stage 0.  Their diagnosis was not really "DCIS".  There is no such thing as Stage 0 with microinvasion.  What the actual diagnosis is is Stage 1 T1Mic (Stage 1 tumor, "mic" for microinvasion).  In my case, I had about 9cm of DCIS, only 1mm of IDC and I tend to think of myself as a DCIS patient, but I know that I'm actually Stage 1.

    So the net of it is that DCIS cannot spread, but DCIS evolve to become IDC, and IDC can spread. 

    Hope that helps!   

  • Faith-60
    Faith-60 Member Posts: 5
    edited January 2008

    I was dianosed with Stage 11 infiltrating ductal carcinoma. Three weeks ago I had a segmentectomy and axillary note dissection. My surgeon informed me on a follow up visit that I need more surgery for additional axillary node dissection. In other words it has spread to my lymp nodes. Here's the problem. My Oncologist says I don't need more surgery I just need to start chemotherapy and radiation now. He says I don't need all the side effects of the surgery.  I called my surgeon and he informs me that surgery is the stanard procedure. I did make a third opinion appt. with another Oncologist but canceled it after doing some research on the internet. My surgeon will be calling me tomorrow regarding rescheduling my surgery. Does any one out there have any imput? I would appreciate any infomation you might have. Thanks.

  • Faith-60
    Faith-60 Member Posts: 5
    edited January 2008

    I was dianosed with Stage 11 infiltrating ductal carcinoma. Three weeks ago I had a segmentectomy and axillary note dissection. My surgeon informed me on a follow up visit that I need more surgery for additional axillary node dissection. In other words it has spread to my lymp nodes. Here's the problem. My Oncologist says I don't need more surgery I just need to start chemotherapy and radiation now. He says I don't need all the side effects of the surgery.  I called my surgeon and he informs me that surgery is the stanard procedure. I did make a third opinion appt. with another Oncologist but canceled it after doing some research on the internet. My surgeon will be calling me tomorrow regarding rescheduling my surgery. Does any one out there have any imput? I would appreciate any infomation you might have. Thanks.

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