DCIS "with lymphatic involvement"

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adot99
adot99 Member Posts: 14
edited October 2015 in DCIS (Ductal Carcinoma In Situ)

Hi,

I was just diagnosed on Monday and am waiting for my first interdisciplinary conference next Tuesday. When the radiologist called with my biopsy results, he said I had DCIS with possible lymphatic involvement. He said the lymphatic involvement could be from the biopsy or something else. It seems to me that this means they can't actually say that I have DCIS, then, right? DCIS by definition hasn't spread, but the path result might mean that it HAS spread. So why do they keep telling me it's DCIS when it seems like they really don't know yet?

And if there's potential lymphatic involvement, then why haven't they requested a biopsy of one of my armpit lymph nodes?

And does anybody out there have any idea if this assertion that "it could be from the biopsy" is real or even remotely likely?

When I'm faced with a problem I don't know anything about, I do research. But I don't know if researching DCIS is a waste of time because that's not really what I have and they just don't want to admit it until they're positive after surgery. I'd MUCH rather be told "We don't know yet, but odds are it's X."

I tried asking the nurse coordinator and she basically didn't actually listen to the question. I got "there, there, I know this is scary but we'll take care of you" instead. Yes, I'm terrified, but that's not what I asked. I will hopefully get better answers next Tuesday, but I'd really rather walk into that conference prepared.

Sorry, I'm totally venting. I've been reading a lot of the posts on this site and am hopeful that somebody out there will have some thoughts for me.

a.

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  • Annette47
    Annette47 Member Posts: 957
    edited September 2015

    It sounds like (and I could be wrong) that you have at least one swollen lymph node, but your biopsy result showed DCIS only. In which case the possibilities that I can think of are that the biopsy only picked up the DCIS but there may be another area of invasive cancer which has then spread to the lymph node OR that the biopsy caused a reaction (local inflammation) that caused the swollen lymph node. Any sort of insult to the body can cause a reaction like that so while I don’t know how often it happens, it is definitely a possibility. Or a third scenario in which the swollen lymph node is completely unrelated and is a reaction to something else entirely. Hopefully it is the second option! Either way, I would think they would want to biopsy the lymph node at some point to determine which is the case. They may want to wait and do that at the time of whatever surgery you decide on to remove the known DCIS though.

    Don’t leave that conference until you get all your questions answered ... I know it’s impossible, but do try to distract yourself with other things between now and then.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2015

    Hi adot99:

    You can obtain a copy of your pathology report and see exactly what it says. Call the office and ask if it is available on-line, or could be picked up or faxed to your attention. That would give you an opportunity to do some advance preparation, so you will be better able to absorb information at the appointment and prepare some questions.

    One possibility might be that there was an observation of possible local "lymphovascular invasion" ("LVI"). Note that LVI is not the same as regional axillary lymph node involvement:

    http://www.breastcancer.org/symptoms/diagnosis/vas...

    You can download the .pdf at the bottom of the above link to help you review your pathology report when you get your hands on it. There is a glossary and sample questions. The pamphlet is one-size fits all, so not all tests will have been performed at this point.

    This paper suggests that in some cases of DCIS at least, the observation could be an artifact of biopsy:

    http://ajcp.ascpjournals.org/content/133/5/781.lon...

    Again, it is best to obtain a copy of the pathology report from the biopsy to be certain about the basis for what you were told.

    BarredOwl

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  • adot99
    adot99 Member Posts: 14
    edited October 2015

    Thanks so much for the replies. I should be getting the pathology report in a couple of days. I can tell already that the waiting is going to be very tough throughout this whole process. It looks like the chance that it's artifact is low, but is there.

    I appreciate your thoughtful answers!

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  • mefromcc
    mefromcc Member Posts: 188
    edited October 2015

    adot99, Two separate surgeries, the surgeon found an enlarged lymph node along the side of my foob, but not in the armpit. Both times the enlargement was from filtering out inflammatory changes occurring from prior surgeries. No cancer. I think of it as when I last had tonsillitis 4 years ago and the lymph nodes on that side of the neck were swollen and painful.

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  • calidancer
    calidancer Member Posts: 88
    edited October 2015

    My sentinel node appeared enlarged but had no cancer cells. They assumed the swelling was from the (fairly recent) biopsy.


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  • CAMommy
    CAMommy Member Posts: 437
    edited October 2015

    biopsy is useful starting off point but they can't make a dx until after final pathology from a lumpectomy or mastectomy. Some number of DCIS contain IDC and end up being upgraded so you can't assume you have DCIS only from a biopsy regardless. I know, the uncertainty and the waiting are the hardest part.

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  • adot99
    adot99 Member Posts: 14
    edited October 2015

    Thanks again, everybody, for responses. I went to my multidisciplinary conference today and got more info. Yes, we are correct that they won't really know until after the surgery. (I just wish they had told me that earlier instead of giving me the ambiguous information!) In the interests of "it is what it is and let's just get it figured out" I jumped on their opening in the OR tomorrow. Yes, tomorrow! I also got good info about the pathways we might take depending on different results. I'm still mostly thinking I will have dodged a major bullet if I can not end up getting chemo. We'll see.

    Anyway, thank you all again for being so responsive. I can't believe this is happening and it all just seems surreal. It's great to know there's a community out there that's all set to help.

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