DCIS roller coaster

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gretchy
gretchy Member Posts: 106
edited October 2014 in DCIS (Ductal Carcinoma In Situ)

I was initially relieved when I got the diagnosis this week, because I thought  no chemo. Then, my sister read my pathology report and said the surgeon didn't talk about a test on called the KI67 which she  talks about how quickly cells are multiplying and mine was greater than 20 whatever that means. So, I faxed all my pathology reports to all of my doctors and my OBGYN was really somber saying I may need chemo. My sister is humble and says she does not really know what the test means but that I should ask the oncologist about it when I meet her for the first time this coming Tuesday. It's just frustrating when different doctors say different things, what are you supposed to do? I find it hard to keep this a secret at work, so I'm told clients, boss and co workers and it's just a like a roller coaster because  I don't yet know what my treatment will be when they ask me.

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  • crestie
    crestie Member Posts: 14
    edited October 2014

    Hello Gretchy,

    Sorry to hear of you diagnosis.

    If you don't mind me asking, was your final diagnosis purely DCIS?

    I am a little confused as to why it has been suggested you might need chemotherapy if it is DCIS and think it would be helpful for forum users who might want to offer advice and support to have more information.

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  • Beesie
    Beesie Member Posts: 12,240
    edited October 2014

    OBGYNs are not experts on breast cancer.  Neither are PCPs. 

    For information about your diagnosis and a recommended treatment plan, you should rely on the experts - your breast surgeon, a radiation oncologist and a medical oncologist. If you want additional opinions, you should seek a 2nd opinion from another breast surgeon (if the question is surgical) or another medical oncologist (about the overall treatment plan and prognosis).

    The first and most important question is whether the pathology report shows the presence of any invasive cancer or whether it shows only DCIS.  If you have pure DCIS, you will not need chemo.  Chemo is never given for pure DCIS. 

    If you have invasive cancer, there are other factors and tests that are used more than the Ki-67 results to indicate whether chemo might be advisable. The size of the invasive tumor, the hormone status (triple negative, for example), the HER2 status (HER2+) and the Oncotype score (for those who have ER+ and HER2- cancers) would all generally be used more than the Ki-67 result to determine the recommended treatment plan.  From breastcancer.org: 

    "Although the S-phase fraction and Ki-67 level may provide you and your
    doctor with useful information, experts don’t yet agree on how to use
    the results when making treatment decisions. Therefore, not all doctors
    order these tests routinely, so they may not appear in your pathology
    report. The other results in your report will be much more important in
    making informed choices. (If you decide to have an Oncotype DX test
    to check the likelihood of cancer coming back and whether you could
    benefit from chemotherapy, Ki-67 will be included in that panel of
    testing.)    "    Rate of Cell Growth

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited October 2014

    ok, of course you are on a roller coaster but  I think that Bessie is more of a DCIS expert than your sister.  Do talk to the BS or MO, the other docs are not reliable, sure know mine were not!

    sides, it is certainly a good idea to get a 2nd opinion

    When I was diagnosed I asked about chemo, my MO said I did not need it but if I wanted it, heck, she would give it to me.  6 years clean after DCIS and treatment was surgery, rads and aromasin for 5 years

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  • crestie
    crestie Member Posts: 14
    edited October 2014

    In reply to proudtospin

    I find it shocking that an oncologist would agree to give you chemo if you said you wanted it!!! Despite the fact that it would be completely unwarranted and inappropriate. I hope you found a new Doctor!

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  • gretchy
    gretchy Member Posts: 106
    edited October 2014


    Good question. I think one of the posts said that GYN's don't know breast cancer reports so that is the one that hinted maybe it would need chemo. I don't know if it is "pure" DCIS that is a good question for when I go to the oncologist. I have heard the surgeon say more than once "microinvasion".  Sorry, I'm still kind of ignorant about the process, but I'm sure I'll get better at understanding once time moves along.

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  • gretchy
    gretchy Member Posts: 106
    edited October 2014

    Thanks so much this is a lot of helpfu info. to give me direction.

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  • Beesie
    Beesie Member Posts: 12,240
    edited October 2014

    What point of the process are you at?  Just a biopsy or have you had your final surgery, with clear margins?  If you have not had any surgery or your final surgery yet, then your diagnosis is preliminary only, not final or definitive. 

    Do you have a copy of all the pathology reports from all biopsies and surgeries you've had?   It should be quite clear if any invasive cancer has been found up to this point.  Look for words that suggest the presence of any of the following:

    • microinvasion or microinvasive
    • invasive ductal carcinoma
    • infiltrating ductal carcinoma
    • invasive lobular carcinoma
    • IDC
    • ILC

    .

    If any of these things are noted in the pathology report as being present, then you have at least some invasive cancer in addition to the DCIS.  If none of these things are noted, or if they are specifically noted as not being present (for example if it says "no microinvasions detected"), then it would appear, at least preliminarily (pending any additional surgeries you may have) that you have pure DCIS. 

    If you have only had a needle biopsy, it's possible that only DCIS has been found, but if the DCIS is very aggressive, the pathology report might note that "the presence of microinvasive cancer cannot be excluded" or something like that. 

    Usually with DCIS women don't see an oncologist until all the surgery is complete, although of course there are exceptions to this.  But in any case, the MO will not be able to recommend a treatment plan until you have your final pathology, and that won't be until all surgery is complete. 

    Waiting isn't fun, but sometimes you just have to wait.  There is no point in speculating or trying to jump the gun, particularly if you don't have all the information needed to make the decisions.  You'll only drive yourself nuts doing that! 

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  • gretchy
    gretchy Member Posts: 106
    edited October 2014


    Hi Beesie,

     

     I had the excisional biopsy to remove the tumor. I have not done the sentinal node surgery yet. I'm still seeing an oncologist before I do that just to better understand things, but I think I understand what you are saying about no forward progress being made until all the results are in. The only "vocabulary" word from your list that I could find is "at least micoinvasive conventional ductal carcinoma, well differenitated, arising in a A background of papillary carcinoma".

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