was stage 0 but after pathology I'm stage 1

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readingmary423
readingmary423 Member Posts: 6
edited March 2014 in Breast Cancer #1
I sure didn't want to be part of this "sorority", but here I am. I am 49 was diagnosed at the beginning of April with low grade stage 0 DCIS. I had the lumpectomy almost 2 weeks ago. When the pathology report came back the breast doctor and an oncologist said it was now considered stage 1. The pathology report says "associated extensive LCIS" but when they called me to tell me about the LCIS after the surgery, the nurse said it was "incidental" because it was so small. Why does the pathology report say extensive if it's incidental? What they took out is called pt1a. What is that? I saw an oncologist last week and he concurred with the breast guy that I should have radiation and then go on hormone therapy. They said that they didn't need to go back in there for lymph nodes or anything. Why did they define Stage 0 and it became Stage 1 now? And according to the breast guy this cuts my chances another 5%. I guess I started with about a 99% survival and now I'm down around 94%. I know I shouldn't complain because a lot of people have it a lot worse. I just don't get how the doctors say one thing and the pathology report kind of sounds different. I trust the doctors, but I'm curious if anyone else has experience with this same type of cancer?

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  • jcs313
    jcs313 Member Posts: 3
    #2
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    Stage 0 then Stage 1
    I was diagnosed with DCIS, had surgery on Jan 6, then pathology report stated that some of the cells had escaped past the margin and I would have to have more surgery. I had the second surgery on Jan. 25, at which time they tested 4 lymph nodes which were found to be cancer free. I was put on Arimidex in February and which so far I have no problem with. I finished 7 weeks of radiation on April 30. The radiation left me a little tired but not much. I feel fine, the oncologist said I was doing really well and I go to the radiation oncologist on Tuesday. I was disppointed that I had to go through the second surgery but feel that I have excellent doctors, the surgeon, the oncologist and the radiation oncologist. We live in a city that has many superior hospitals, medical centers and doctors. I don't know if this helps any but know that this has happened to me and I expect to continue to stay on the road to recovery.
  • CR1954
    CR1954 Member Posts: 1,390 Member
    #3
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    The final pathology report...the one from surgery, is generally the "defining" report. It is far more complete than any preliminary path reports. That is the one that your Drs. will go by, as opposed to any prior reports.

    CR
  • crselby
    crselby Member Posts: 441 Member
    #4
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    second opinion
    CR1954 is right. But you can ask for a second opinion on the reading of the biopsy (lumpectomy) tissue. I would, especially with it indicating a change in stage. Hope you can do that!
    ~~Connie~~
  • greyhoundluvr
    greyhoundluvr Member Posts: 402
    #5
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    Change in Stages
    I asked tis same question and was told by my docs that it is pretty common. When they do the biopsy, depending upon the type, they are looking at a small sample of tissue but when they do the pathology after the surgical excision, they are looking at the whole thing and it can change because they are seeing the more "complete" picture. The main thing is that it is still in situ and you don't have any lymph node involvement so it was caught very early. Best wishes!
  • readingmary423
    readingmary423 Member Posts: 6
    #6
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    greyhoundluvr said:

    Change in Stages
    I asked tis same question and was told by my docs that it is pretty common. When they do the biopsy, depending upon the type, they are looking at a small sample of tissue but when they do the pathology after the surgical excision, they are looking at the whole thing and it can change because they are seeing the more "complete" picture. The main thing is that it is still in situ and you don't have any lymph node involvement so it was caught very early. Best wishes!

    thanks for your response
    After meeting with the radiation oncologist this week the whole thing was actually explained to me properly. It ends up that I had 3 things in what they took out: stage 0 DCIS, LCIS and invasive lobular carcinoma. I had totally not understood that there was anything invasive in there. They got it out and I guess I am lucky because it was very small (1.5mm) so they don't feel that it changes my treatment at all. Thank you so much for your best wishes!
  • readingmary423
    readingmary423 Member Posts: 6
    #7
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    CR1954 said:

    The final pathology report...the one from surgery, is generally the "defining" report. It is far more complete than any preliminary path reports. That is the one that your Drs. will go by, as opposed to any prior reports.

    CR

    thanks for your response
    You were so right. After meeting with the radiation oncologist this week the whole thing was actually explained to me properly. It ends up that I had 3 things in what they took out: stage 0 DCIS, LCIS and invasive lobular carcinoma. I had totally not understood that there was anything invasive in there. They got it out and I guess I am lucky because it was very small (1.5mm) so they don't feel that it changes my treatment at all. I now understand that the biopsy report doesn't really count now, it's the second one after the surgery.
  • readingmary423
    readingmary423 Member Posts: 6
    #8
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    jcs313 said:

    Stage 0 then Stage 1
    I was diagnosed with DCIS, had surgery on Jan 6, then pathology report stated that some of the cells had escaped past the margin and I would have to have more surgery. I had the second surgery on Jan. 25, at which time they tested 4 lymph nodes which were found to be cancer free. I was put on Arimidex in February and which so far I have no problem with. I finished 7 weeks of radiation on April 30. The radiation left me a little tired but not much. I feel fine, the oncologist said I was doing really well and I go to the radiation oncologist on Tuesday. I was disppointed that I had to go through the second surgery but feel that I have excellent doctors, the surgeon, the oncologist and the radiation oncologist. We live in a city that has many superior hospitals, medical centers and doctors. I don't know if this helps any but know that this has happened to me and I expect to continue to stay on the road to recovery.

    sorry that you needed more surgery
    A second surgery sounds pretty crummy. I met with the radiation oncologist this week and my whole thing was actually explained to me properly. It ends up that I had 3 things in what they took out: stage 0 DCIS, LCIS and invasive lobular carcinoma. I had totally not understood that there was anything invasive in there. They got it out and I guess I am lucky because it was very small (1.5mm) so they don't feel that it changes my treatment at all. I hope to become a little more optimistic like you sound. Right now, I feel like I felt the first couple weeks, like it's a brand new diagnosis and I am scared. They doubted that there was any lymph node involvement and if there was any extra "stuff" that had escaped that the radiation would zap it. On one hand, I feel incredibly lucky that they found such a small thing that they never would have found if they didn't see the DCIS that they had go go in there for. But on the other hand, I am wondering if there could be anything else floating around in there. I guess one day at a time and one foot in front of the other. All of this really stinks! Thanks for your positive thoughts!
  • Megan M
    Megan M Member Posts: 3,000
    #9
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    readingmary423 said:

    thanks for your response
    After meeting with the radiation oncologist this week the whole thing was actually explained to me properly. It ends up that I had 3 things in what they took out: stage 0 DCIS, LCIS and invasive lobular carcinoma. I had totally not understood that there was anything invasive in there. They got it out and I guess I am lucky because it was very small (1.5mm) so they don't feel that it changes my treatment at all. Thank you so much for your best wishes!

    Glad you understand your
    Glad you understand your diagnosis. It is confusing sometimes. Wishing you the best of luck!

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