Anyone with DCIS with lymph node positive?
I just got my biopsy result. I have multifocal DCIS, Grade III. (no IDC, clear margins and no microinvation). They have also removed 13 lymph nodes and it was found one positive and in another one some cancerous cells.
Does anyone else has something similar? I thought that DCIS is just in place and hasn't spread anywhere else.
Please help me. I'm so confused.
Comments
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zoe, I recall reading some of your previous posts.... I thought that you'd had a mastectomy. Is this the pathology from your mastectomy, or is it the pathology from a biopsy?
As you said, with pure DCIS, it's not possible (based on current medical knowledge) to have spread to the nodes. But if this pathology report is from your biopsy, then it is entirely possible that some invasive cancer will be found when the final pathology of your mastectomy is complete. That would explain how cancer got into your nodes.
If this is the pathology from your mastectomy and in fact nothing but DCIS was found in all your breast tissue, then there certainly would be questions as to how your nodes were affected. One possibility would be that some invasive cancer was actually present in your breast but it was missed when the breast tissue was being examined. Cancer cells are microscopic, and if you have only a tiny microinvasion (0.05mm, for example), it could be missed. This doesn't happen often, but it does happen. If this is the pathology from your mastectomy and no invasive cancer has been found, if it were me, I would request a second look at the breast pathology, just to be sure. Alternately, it's possible that some of the lymph node cells were contaminated by the surgical tools; in other words, the cancer cells from your breast were moved into the nodes during surgery. This shouldn't happen if a surgeon is very careful but it's been known to happen. Is your surgeon a breast cancer specialist or a general surgeon? I would think that the odds of this happening are greater with a surgeon who doesn't specialize in breast cancer surgery.
So sorry that this has happened to you. I'm sure that nodal involvement is not what you were expecting, thinking that your diagnosis was pure DCIS.
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Beesie,
I made a mistake before. It's not the biopsy result but pathology report after the mastectomy. My surgeon told me that probably i had somewhere a microinvation. My left breast was full of DCIS. The doc who did the pathology report is the brother of a friend, so he was very careful and he examined it more than usual. (that's what i was told)
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I forgot to say that in the pathology report, the receptors of the breast are different from the receptors of the lymph nodes. For example: CerbB2 score in the breast is 0 and in the lymph node 3+, PR in the breast is pos only in 10% and in the lymph node pos in 90- 95%. ER is neg in both.
Do you know what all these mean?
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DCIS has the potential to migrate to other areas and become cancerous. I started with DCIS it migrated into IDC with 3/15 positive nodes.
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zoe, that's really strange about the different CerbB2 and PR percentages.
I'm a bit out of my league here but my understanding is that one of the ways doctors check to see if a second cancer is a recurrence or a new primary is by comparing the ER/PR status. If both cancers are the same (both are ER+/PR+, for example) then they dig deeper to look at the percentage ER+ and the percentage PR+. If the percentages are different that means the second cancer is a new primary rather than a recurrence of the first cancer. So this would seem to suggest that you have a 2nd primary breast cancer (which has not been found) which has different characteristics than your DCIS - and it's this 2nd cancer that has moved into the nodes. How did you doctor explain the differences between the hormonal pathology of the DCIS vs. the hormonal pathology of the cancer found in your nodes?
RegulJ, DCIS by definition is confined to the milk ducts. DCIS cancer cells can travel around within the ductal system throughout the whole breast but these cells cannot migrate to other areas - DCIS always stays within the milk ducts. What can happen however is that DCIS cancer cells can break through the milk ducts; at that point the cancer is no longer considered to be DCIS but is now called invasive cancer (IDC). Once the DCIS evolves to become invasive cancer, at that point the cancer cells can move into the nodes and out into the body. I think this is probably what you meant with your comment but for the benefit of others who are reading, I wanted to clarify that DCIS cannot "migrate to other areas" outside of the breast - the DCIS has to evolve to become IDC first, before any cancer cells can migrate to the nodes or anywhere else.
In any case, what's confusing about Zoe's pathology is that she has positive nodes yet so far no invasive cancer has been found, only DCIS.
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Beesie,
I am not surprised with these diferences between CerbB2 and PR percentages - cancer mutates frantically:
" ... Mutations are not only a hallmark of cancer but may be central to how cancers evolve....
...genomes of cancer cells are unstable, and this instability results in a cascade of mutations..." etc.
at http://carcin.oxfordjournals.org/cgi/content/full/21/3/379(I have lots but it's not in english.)
My DCIS was variably ER+ but the microinvasion in the node was ER- (and HER2+).
In Zoe's case, surgon is most likely right - there is probably a microinvasion in the DCIS. I don;t know how the pathologists examine such huge masses anyway. There are trillions of cells to study.
Jenna -
Jenna, that's very interesting - thanks for providing that link. I have to admit though that most of it is over my head!
I am aware that cancer cells can mutate. And I am very familiar with the fact that HER2 (CerbB2) status frequently changes when DCIS evolves to become invasive cancer. A high percent of DCIS is HER2+; when the DCIS progresses to invasiveness, often the HER2 status changes to HER2-. From my readings on this, the reason for this change in HER2 status and the meaning of this change appears to still be a mystery and studies continue to be done to figure out what triggers this change and what it means to a patient's prognosis. The questioning and confusion about the HER2 change surprises me if in fact it's commonplace for ER and PR status to also change.
What also surprises me is why I've never heard about this before. As I mentioned in my previous post, I have read that hormone status, including percentage ER and PR positive or negative, is one of the measures that's used to determine if a second cancer is a recurrence or a new primary. In fact there have been quite a few women who've come through this board with a second breast cancer who were told by their doctors that they had a new primary and not a recurrence, because the hormone status didn't match the previous cancer. And if ER and PR status are subject to change as the cancer evolves, I also find it surprising that ER and PR status isn't checked always twice for everyone who has DCIS together with invasive cancer (as I did - although a microinvasion only). I'm not suggesting that ER and PR status doesn't change as the cancer mutates - this is the first I've heard about that but I understand the logic in it - however it seems inconsistent with so much else.
So it's a mystery (to me, anyway). But I agree that it certainly makes more sense that Zoe simply had a microinvasion that was missed and that's the explanation for her positive nodes.
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My surgeon told me that when you have DCIS that is grade 3 comedo carcinoma it can enter the bloodstream very early on. I didn't get the impression that it's impossible to have affected nodes with that type of DCIS at all.
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desdemona, I don't know why your surgeon would have said that. Based on the current medical understanding of DCIS, DCIS cancer cells cannot enter the bloodstream. What has to happen first is that the DCIS cancer cells must undergo one final biological change which gives the cells the capability to break through the milk ducts and survive outside of the duct. With that biological change, the DCIS cancer cells have converted to become invasive cancer cells - in other words, it's no longer DCIS. At that point, once the DCIS has become IDC, it is possible for the cancer to travel to the nodes or into the bloodstream. But unless the cancer progresses to become IDC, DCIS cannot move beyond the milk ducts of the breast. Maybe what your surgeon meant is that with high grade DCIS (grade 3 with comedonecrosis), this biological change to become IDC can happen anytime - and that's why high grade DCIS needs to be treated aggressively and without much delay.
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beesie,
I think desdemona meant that high grade comedo DCIS can at any time create invasive cancer (a new entity, not DCIS). Unortunately, not all doctors see it that way. My surgical oncologist was not worried at all with the pathology of my DCIS.
As you said, it is surprising that ER (and PR) status isn't re-checked for the invasive part. In my case, the node was palpable and it was excised during the surgical biopsy of the breast. The pathologist did not check it for the ER status though (who determines the thoroughness of the biopsy anyway?). After the mastectomy, I was finally assigned a medical oncologist and she decided to repeat the biopsy of the node and also to present/review my case at the consilium (oncologists have every Friday at BCCA).Jenna
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Well I had IDC and DCIS...IDC was grade 1 DCIS was grade 3......DCIS was larger than IDC so I wonder if the DCIS could have now traveled somewhere else since the IDC had broken through?.....The IDC was 1.6 cm total (my biopsy took .6 cm of it before my bilat masts)......Don't remember what the DCIS was as onc said it didn't count.......My oncologist only counts the 1 cm....I wonder why the docs don't count the WHOLE tumor?.......Would that possibly change treatment protocol?........I have often wondered this same thing if it could spread through surgery......I sure hope and pray it didn't!.......
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Jenna, yes I hope that is what desdemona's surgeon meant (that high grade DCIS can change into IDC at any time) but that's not how I read her statement so I wanted to clarify the point for the benefit of others who may be reading. I wouldn't want anyone who is newly diagnosed with pure DCIS to worry that the DCIS might migrate into their bloodstream or nodes.
Hollyann, many women have IDC and DCIS. In fact the vast majority of IDC develops from DCIS so in fact my understanding is that most women who have IDC also have some DCIS (although many may not even be aware of it). But here's the thing about DCIS: DCIS is dangerous only in that it can become IDC at any time. So for anyone who has already has IDC (in other words, your DCIS has already evolved to become IDC), the diagnosis and treatment will be based on the size and pathology of the IDC, since this is the more serious condition. The DCIS in effect become incidental, except for the fact that it needs to be removed. By treating the IDC, the DCIS is effectively treated as well. As for the amount of DCIS, while a larger amount of DCIS might require a different surgery (mastectomy instead of lumpectomy), once DCIS is removed, it really doesn't matter how much there was to begin with. DCIS staging doesn't change based on the amount of DCIS found - any amount of pure DCIS is always Stage 0.. DCIS cancer cells by definition are confined to the milk ducts and can't move outside of the breast, whether there is a little or whether there is a lot, so prognosis doesn't change either, assuming that all the DCIS is effectively removed (and/or killed off by radiation and/or Tamoxifen). It's very different for invasive cancer because invasive cancer cells can travel into the nodes or into the bloodstream, and from there, to other parts of the body. The greater the size of the invasive tumor, the more invasive cancer cells you have and the greater the risk that some of those cells might have escaped. What this all means is that what your oncologist said is completely consistent with accepted treatment guidelines. For those who have invasive cancer along with DCIS, only the area of invasive cancer is considered in determining the size of the tumor, the staging of the cancer and the treatment protocol. Any DCIS that is found needs to be removed, but other than that, it's not considered in the diagnosis or the treatment plan.
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I remember a study from Britan in December that said the node can have different receptors than the tumor. 50% of the time I recall. Strange!
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Jenna, I've been trying to find out more about the change in hormonal status as cancer progresses from DCIS to IDC. I haven't found anything on that, but I did find one article, published just this past November, that talks to changes in the hormone status as cancer moves from the breast into the nodes. What's interesting is that the article mentions that until this study was done, it was believed that these types of changes occurred in less than 20% of cases. This study suggests that the percentage might be much higher than that. What's also interesting is that the study referenced in this article apparently is "the largest study of it's kind" and yet they studied only "385 primary tumor and 211 nodal cancer samples". To me, with my research background, that seems like a pretty darn small study. http://www.medscape.com/viewarticle/712235
In all my searching so far I've only found one other article on this topic, this one referencing a study done in 1989; this study involved only 38 patients. http://archsurg.highwire.org/cgi/content/abstract/124/10/1131
So maybe this answers the question as to why positive nodes aren't routinely checked for hormone status - it appears that the possibility of a change in hormonal status between the primary tumor and the nodes isn't very well documented or understood. The recent article also seems to imply that the hormonal change occurs as the cancer moves from the breast into the nodes, which might suggest that as cancer progresses from being DCIS to IDC, this type of change is not known to occur (or maybe this just never has been studied).
Cookiegal, I just saw your post as I was previewing mine. I think the study you mentioned is the same one that I referenced.
Edited for typos only (I was sleepy when I originally posted this!)
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Beesie, I hope this is not too off-topic, but I know you know a ton, and this touches on something I've wondered about my case. In 2003 I had a stereotactic biopsy which showed DCIS, and then a lumpectomy. The pathology for the lumpectomy didn't find any DCIS, so the surgeon said, they must've gotten it all out with the biopsy. 6 years later a screening mammo turns up an enlarged node on the same side, which, when biopsied, showed IDC.
My question is, if the only difference between DCIS and IDC is it's ability to get outside the duct, does surgery give it that pathway if all the DCIS is not removed at the time of surgery?
I went ahead with a bilateral MX, and the pathology of the breast itself still shows no cancer, just an area that may have been cancer; I wonder if it's the lumpectomy site, rather than a new primary. (I had neoadjuvant chemo before the MX, so it's possible that it was a new primary that the chemo took care of, but nothing ever showed on any screening.) Both times were ER+/PR+. Sorry to be long winded and possibly going off on a tangent. Any thoughts?
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kw212, the question you ask about whether the surgery on your DCIS provided a pathway out of the duct is a frequently asked question and a very common (and understandable!) concern. Often this is asked even about just a stereotactic/core needle biopsy - does the hole in the duct provide a pathway out for the DCIS?
Over the past couple of years what's been confirmed by a few research studies is that in order for DCIS to become invasive, it must undergo a biological change. Without that change, DCIS cancer cells can be moved outside of the milk duct but they won't survive. So while DCIS cancer cells resemble invasive cancer cells in almost all dimensions, there is this one key difference that keeps DCIS from becoming invasive, whether the cancer cell is in the duct or whether it's been moved outside of the duct (through a biopsy or surgery). However, once this biological change occurs, this enables the cells to break through the duct, and to survive and continue to grow and multiply outside of the duct. It's the same cancer cell that it was before when it was DCIS, but now it's acquired it's full capabilities and has become IDC.
When women ask the question you asked, I think about my own situation. I had aggressive (grade 3 with comedonecrosis) DCIS in two areas of my breast, plus a microinvasion of IDC (in other words, in one area, my DCIS had already started to undergo this final biological change). I had an excisional biopsy that removed a lot of DCIS plus the microinvasion, but I was left with dirty margins on all sides of both areas of DCIS. So I had a lot of cut ducts and a lot of aggressive DCIS still left in my breast. For various good reasons, I didn't have my next surgery, my mastectomy, until 2 1/2 months after my excisional biopsy. And yet when the breast tissue was examined after my mastectomy, while there was a lot more DCIS, no more invasive cancer was found. Over the four years I've been on this site, I've seen many other women who've had the same experience as me. So this confirms that DCIS cancer cells don't become invasive cancer just because the ducts have been cut and these cells have the opportunity to move into the open breast tissue.
In your situation, without a DNA fingerprinting of the cancer cells, it's impossible to know if your 2nd cancer was in fact a recurrence or a new cancer. It could have been a recurrence if in fact your original cancer included a tiny amount of invasive cancer that was removed but never found. In that case it's possible that just a few cancer cells had already moved into the nodes before you had surgery, only to be discovered 6 years later. Or it could have been a recurrence if a few DCIS cancer cells were left behind after your lumpectomy, and if over time these evolved to become IDC (i.e. they underwent the biological change) and then a few cells moved into the nodes. Alternately, your 2nd cancer could have been the result of a new primary invasive cancer, which again was never found in the pathology. It could be any of those possibilities.
Hope that makes sense.
zoegr, this discussion has gone quite a bit off topic from your original question, but hopefully the discussion is still meaningful and relevant to you. Have you had an opportunity to talk to your surgeon or an oncologist about your situation?
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Over the past couple of years what's been confirmed by a few research studies is that in order for DCIS to become invasive, it must undergo a biological change.
Well that explains a lot - my surgery was 8 years ago. Plus, he told me that post-surgery as an aside when he was telling me that I was extremely lucky to have caught it so soon because comedo carcinoma "tends to enter the bloodstream very early." I guess I misinterpreted what he meant.
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Beesie, you are a wonder! Your explanation is so clear, thank you very much.
Zoegr, I hope you get the answers you are looking for! Hang in there!
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Thank you very much for all your information. Tomorrow i have an appointment with an oncologist. I read in the internet that there is a category called DCIS with microinvation. Probably this is what i have.
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http://moffitt.usf.edu/moffittapps/ccj/v6n3/article5.htm
Very good article that explains the DCIS and lymph node involvement
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desdemona, I know your signature line indicates that you were diagnosed in 2001, but I didn't connect the dots to realize that your surgeon made that statement about high grade DCIS over 8 years ago. Now it makes sense! What he said may have been the understanding at that time but there has been so much new information about DCIS that's come out since. Because DCIS wasn't that common until 15 - 20 years ago, it wasn't studied much. Now DCIS is a major area of study and as a result, we are finding out new things all the time. The information about the biological change wasn't known (or at least wasn't widely understood) when I was diagnosed and that was only 4 years ago.
kw212, you are very welcome! I'm glad that what I said made sense, even if it doesn't help answer your question about whether you had a recurrence or a new primary.
zoegr, thanks for providing the link to that article. It's really good - it covers a lot of information about the diagnosis, pathology and treatment of DCIS and it's written in simple English so it's easy to understand. I've bookmarked it so that I can refer to it and I'm sure that I will be providing it to others who have questions about their DCIS diagnosis. Good luck tomorrow at your appointment; please let us know what your oncologist says. And yes, DCIS with a microinvasion is categorized differently than DCIS. With the microinvasion, the staging moves from Stage 0 (which is always pure DCIS) to Stage I. But DCIS with a microinvasion is the earliest classification within Stage I. The TNM staging is T1mic (meaning that that the invasive tumor is a microinvasion of 1mm or less in size), N0 (no nodal involvement) and M0 (no mets). That's my diagnosis. In your case, because you have the nodal involvement, you probably won't be classified as Stage I (T1mic) but instead will be moved to Stage IIA. Pages 58 - 60 of the NCCN treatment guidelines explain staging: http://www.nccn.org/professionals/physician_gls/PDF/breast.pdf (I hope that you can access this file - it seems that NCCN have recently stopped making the full guidelines available to patients but so far I can still get into the file because I bookmarked it prior to the change.)
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wow interesting article
Not to be off topic but this has been useful to me.
I had a small tumor with a low KI67, grade two, so I was surprised when I was node positive.
I think I understand better!
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cookiegal, when talking about lymph node involvement, the two lines in the article that struck me were:
"Our studies have shown that the seeming lack of microinvasion in the primary lesion does not prevent the presence of nodal disease."
and
"Positive sentinel lymph nodes were found in 8.6% of the T0 or presumed pure DCIS patients. We believe that sentinel lymph node evaluation is an excellent method for determining whether microinvasion is present at the primary tumor site. "
What these statements suggest to me is that the authors believe that lymph node involvement only comes about as a result of a microvinvasion, but microinvasions may not always be found (it can be a search for a needle in a haystack). As a result, they suggest that testing the nodes may be one way to find out if in fact a microinvasion was present. In other words, if the nodes are positive, then it can be presumed that there was a microinvasion.
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Beesie,
I'm wondering what would had happened if my surgeon hadn't checked my lymph nodes. My pathology report would be DCIS and everyone whould be happy for the good result. But the cancer that was already in the lymph nodes would start spreading further. I don't even want to think about this option.
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zoegr -
Really sorry to hear about the lymph node involvement! Are you going to ask your doc to clarify and let us know what's going on?
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Cases like your make me a strong advocate of lymph node examination for DCIS patients with grade 3 comedocardinoma, zoegr. The fact that they got that lymph node out of there and will now include that in your radiation therapy will be a life saver for you I am sure!
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I'm sorry to hear you are going through this, Zoe!
Now I am concerned that I did not have a SNB with my lumpectomy last spring. I hadn't realized that there could be microinvasion that wouldn't be found in the pathology. I was grade 2 with central necrosis on the biopsy path report and 2/3 on the lumpectomy path report. I wonder if that fact that I wasn't grade 3 (or at least not fully grade 3) means that no SNB was needed. Too late now in any event, I suppose. And hopefully if there was anything the radiation got it ...
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The most recent reference source for the article zoegr posted was 1999. Just as I was thinking I was dumbass not to have a SNB, now I'm wondering how up to date that article's conclusions are.
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Hopefully pathology has improved since then so there are fewer cases of microinvasion that go undetected, but based on Zoe's experience it must happen! Argh! I would think, though, that if there was something in a node there's a high likelihood that it would have been destroyed by the radiation. I hope so anyway ...
I'm seeing the medical oncologist next week (follow up to see how I am doing on the tamoxifen a few months in) so I'll ask him for his thoughts.
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I have to say this scares the crap out of me. I just had my lumpectomy 2 days ago with no SNB. Zoegr - I am so sorry this has happened to you. I hope you will update us with some answers from your Dr. I'll be thinking of you.
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