How do node negative surviors have METS?

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BLS
BLS Member Posts: 31

I'm seeing so many patients with node negative breast cancers who end up stage IV? How can your breast cancer mets if not via nodes?

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  • Tpralph
    Tpralph Member Posts: 487
    edited April 2017

    sime can spread through the vascular system. It is not as common but it happens.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited April 2017

    And some dormant individual cancer cells can spread to distant sites even before enough cells get together to form a primary tumor. In the case of ductal carcinoma, this can happen as early as puberty, childhood or even in the womb! The process of building hollow ducts (such as milk ducts in the developing breast tissue) requires an on-off genetic cycle of mitosis (“divide" or “grow") and apoptosis (“stop") in cells—their action is sort of like snipping or chewing through to create a hollow tubular space. We all have some potentially malignant cells lying dormant somewhere in our bodies, but in the usual course of events they remain dormant throughout our lives. When they “wake up" via a sudden mutation within our milk ducts they are primary breast cancer tumors (or sometimes, new primary or local recurrence tumors if this is the second time around); when they wake up in distant organs and have the same biology as the original tumors they are metastases. This is how some (very few, but it happens) people who had DCIS and/or bilateral mastectomies find themselves with mets decades later. It has nothing to do with having been underdiagnosed or under-treated or even having failed to lead a preventive lifestyle. It is truly a cosmic case of “sh-t happens."

  • Bright55
    Bright55 Member Posts: 176
    edited April 2017

    cisandy

    Thankyou for clear summary

    It is very diffifficult to get yourhead around this

    BUt it is called Bloody bad luck! What we have to understand is that there are no tests that can predict this..just that we dcis people should ask for more than a mammogram dont be complacent

    All the best everyone B

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited April 2017

    Hi BLS:

    Node-negative status is a favorable pathologic finding and is generally associated with a lower likelihood of suffering distant metastatic recurrence. It is not a guarantee that no cells have left the primary breast tumor and reached distant sites.

    Even with node-negative (N0) invasive disease and no lymphovascular invasion ("LVI"), it is still possible that in the years before surgery, a few rogue cancer cells broke off from the breast tumor, and moved to distant sites via the lymphatic system or via the blood stream.

    A few rogue cells or clusters of cells at a distant site(s) are a form of "micrometastatic" distant spread that is NOT detectable by conventional tumor staging procedures or whole-body scans. Thus, such undetected distant micrometastases may be present, even when scans are negative, the lymph nodes sampled are negative, and there is no LVI observed. This is because these methods are not 100% accurate in determining whether any tumor cells have moved to distant sites, and cannot exclude the possibility.

    The risk that current undetected micrometastases may grow and become clinically manifest as recurrent metastatic disease at a later date provides the rationale for systemic therapy (e.g., chemotherapy; endocrine therapy (for hormone-receptor positive disease); and/or HER2-targeted therapy (for HER2-positive disease)):

    Pantel, J Natl Cancer Inst (1999) 91(13): 1113-1124 - [parenthetical notes added by me]

    "Because the goal of [post-surgical, systemic] adjuvant therapy is the eradication of occult [undetectable] micrometastatic tumor cells before metastatic disease becomes clinically evident . . ."

    Those with node-negative disease may receive such systemic treatment(s), based on their distant recurrence risk. Unfortunately, while such treatments can reduce the risk of such distant recurrence, they are not 100% effective.

    BarredOwl

  • Jojo0529
    Jojo0529 Member Posts: 193
    edited April 2017

    great explanation Barredowl. Based on the logic is it fair to say that some stage 4 are cured but will never know they actually had distant dorrad

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited April 2017

    Hi Jojo0529:

    Yes, for those at earlier stages, such micrometastatic disease is treated with curative intent and often with success. However, having undetected micrometastatic tumor cells is not considered stage IV disease. The latter is treatable, but not curable.

    BarredOwl


  • Slavab
    Slavab Member Posts: 9
    edited May 2017

    New research on figuring this out just started in the Netherlands (among many others). See also the link in the Layman's guide

  • Icantri
    Icantri Member Posts: 93
    edited May 2017

    I have been thinking for some time how misleading it is to call it a "recurrence" when these undetected cancer cells turn up as mets since they have likely been there since the original tumor. To me, the cancer didn't recur, it just hadn't grown enough to be detected in the other place(s) until later. Recurrence to me sounds like it happened all over again, the cancer came back, when in fact it was there all the time.

    Nomenclature is not a big deal, but until I had cancer myself I didn't understand that part and I also didn't really understand why cancer survivors were so worried about recurrence if the primary tumor was gone and it hadn't yet spread. And I thought I understood cancer Just saying, the term "recurrence" seems to perpetuate misunderstandings.



  • Tinkerbells
    Tinkerbells Member Posts: 211
    edited May 2017

    Sobering information. Wish more people who have not be diagnosed were more aware of this

  • Beesie
    Beesie Member Posts: 12,240
    edited May 2017

    Icantri, I've always viewed the word "recurrence" differently than you. To me, the "re" is the important part because it means that it's the cancer that was there before that is re-occurring.

    Of course for the original cancer to re-occur, it means that it was never really gone. Some cancer cells from that original cancer were somehow left alive after treatment, but not detected. This could be a few rogue cells that were left in the breast - and the cancer then might recur either as a localized recurrence in the breast area, or those cells might eventually travel and the cancer recurs as mets somewhere else in the body. Or it could be a few cancer cells that had escaped the breast prior to surgery and treatment (usually, prior to the cancer even having been discovered) that after some period of time start to grow and multiply (and possibly travel) and are eventually detected as a metastatic recurrence.

    The medical definition of recurrence is as follows: The return of a sign, symptom, or disease after a remission. The reappearance of cancer cells at the same site or in another location is a form of recurrence. This same source's definition of remission is: Remission: Disappearance of the signs and symptoms of cancer or other disease. A remission can be temporary or permanent.

    Another definition, from the NCI: Cancer that has recurred (come back), usually after a period of time during which the cancer could not be detected. The cancer may come back to the same place as the original (primary) tumor or to another place in the body. Also called recurrent cancer.

    So the word "recurrence" from a medical standpoint means that the disease has become evident again after a period during which there had been no signs or symptoms. To me, this definition implies that the cancer itself was in fact always there, simply not detected.

    Personally I think the really important distinction is between a recurrence and a new primary. Some definitions of "recurrence" include a new primary, but most are specific to the original cancer re-occurring. I often see posts on the board where someone mentions a "recurrence" in the other breast. In almost all cases, however, when cancer develops in the other breast, it is a new primary that is unrelated to the original diagnosis. From a prognosis standpoint, this is a very significant difference, which is why I think it's important to only use the word "recurrence" in situations where in fact it is the original cancer that has become evident again. (Understanding that sometimes, when cancer is detected a second time in the same location of the same breast but many years later, it is extremely difficult to know if the second cancer is a recurrence or a new primary.)

    What I believe is a big misunderstanding about cancer, even among women who've been diagnosed with breast cancer, is that once you've had cancer, you are then at risk for both a recurrence and a new primary. These are two different & separate cancers and different & separate risks, and this isn't well understood. Once diagnosed, we tend to put all our focus on our recurrence risk, often without even recognizing that even if we (and our doctors) successfully treat this particular breast cancer, it doesn't mean that a new primary breast cancer might not develop at some point in the future. So often I see posts from women who say "How could this happen?", particularly when the new primary develops many years (15, 20, 25) after the first diagnosis. Yet in many cases, especially for those who have an early stage breast cancer with an excellent prognosis, the risk of a new primary might be quite a bit higher than the risk of a recurrence. The timing of the risk might differ too. Recurrences tend to happen within the first 5 years or 10 years; of course we all know of cases where there has been a later recurrence, but the majority of recurrences happen more early on. The risk for a new primary, on the other hand, may be greater in later years, depending on one's age. As women, our 60s and 70s are our highest risk years, so someone who was diagnosed at 45 might have a very low recurrence risk by the time she reaches 65, but a much higher risk of a new primary.

    I think that nomenclature is actually pretty big deal, particularly when it comes what we define as being a recurrence versus a new primary.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited May 2017

    Beesie, I agree. Being 14 years NED is great. I am much less concerned about a recurrence 14 years out from diagnosis as I am a new primary. I was 38 at diagnosis, so I will be entering into my highest risk years in the future.

  • Icantri
    Icantri Member Posts: 93
    edited May 2017
    Beesie, I know you are correct in how the medical community defines a recurrence. People will always have different interpretations and maybe I am the only one feels like there could be a better word for it. Flare? Reappearance? I don't know. Maybe I am the only one who finds recurrence misleading.

    And I am in full agreement that it needs to be more stressed that new primary cancers are a concern, and for longer periods of time. For someone like me (48 yo) I pretty much expect to deal with another cancer beyond the 5 - 10 years that seem to be the medical benchmark for success. Kinda frustrating when there is no screening available for many types of cancer I am at risk for for other reasons.

    But, on the plus side, having been here done that I will be way more vigilant.
  • Beesie
    Beesie Member Posts: 12,240
    edited May 2017

    The basic concept of recurrence is confusing, particularly to those who have never been diagnosed. "How can I have a recurrence if I had successful surgery and treatment?" is something that most people probably don't initially understand. It's particularly confusing with regard to the development of mets, and even more confusing if someone had negative nodes, as per the OP's question. The idea that cancer cells might have escaped from the breast undetected, possibly years before the diagnosis, is not something that most people - who haven't been diagnosed - would understand. And if someone has had successful treatment and there was no evidence of mets at the time of the diagnosis, how can mets suddenly show up years later? Until we are diagnosed and faced with these issues, I don't think most people understand how imperfect screening is and how imperfect treatment is. Because current methods of screening can't 'see' really tiny cancers, there is no way to ever know if one's treatment really did kill off all the cancer, or if there are a few cancer cells still lurking, waiting to develop into a recurrence in the future.

    So I'm not sure if it's the word "recurrence" itself that is difficult to understand, or rather the concept of recurrence. Maybe the term "end of remission" would be clearer?

    As for the risk of a recurrence vs. a new primary, I was diagnosed with a very early stage BC and having had a MX, my risk of recurrence, either localized or metastatic, was only about 1% - 2%. My new primary risk was much higher than that. I was diagnosed at the age of 49, and my oncologist estimated my lifetime risk to develop BC again to be about 22%. That sounds high, and certainly is higher than average (driven by my family history, high breast density and my personal history of breast cancer), but the 22% was spread over the rest of my natural life, estimated to age 90. A 22% risk spread over 41 years doesn't sound quite as scary. I'm now 11 years out and 60 years old. So far (knock on wood, fingers crossed), no recurrences and no new primaries, but I admit that I was not too happy on my last birthday, realizing that I am now entering my highest risk years for breast cancer. That said, most women diagnosed with breast cancer are diagnosed only one time, so I am hopeful that I won't be diagnosed with another new primary. Another type of cancer? Yeah, that's quite likely, given my family history, the general prevalence of cancer and the fact that I was first diagnosed at 49. That gives me a lot of years to be diagnosed again. We all need to understand that a diagnosis of breast cancer, even successfully treated, doesn't give us immunity against another diagnosis in the future, either of breast cancer or any other type of cancer. That's not to say that we should live in fear. It's just a reminder that we have the same risks as any other human; there is unfortunately no card that gets stamped that says that we've served our time and can't be called up again.

  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited May 2017

    Hi All,

    I have found this discussion interesting as I am one of the anomalies. I was diagnosed in 2001 at the age of 38 with Stage 2a. While I was not node negative, I only had very small micro mets in my sentinel node. Following a partial mastectomy I was treated with 6 rounds of CEF, radiation, 5 years of Tamoxifen and 3 years of aromatase inhibitors. In January of this year I was diagnosed as stage IV with cancer cells in the pleura.

    Interestingly, I would argue that the micro mets had little to do with me current diagnosis other than indicating that the cells were on the move. I did have extensive lymphatic and vascular invasion, and, I suspect, the cells migrated to my pleural lining before I was diagnosed and proceed to simply "hang out" until something triggered the growth. Even now it is unclear if I have any masses that can be detected via scans. (I may have a mass in my right lung but it was difficult to tell as my lung was almost completely collapsed from the fluid build up. I may also have some growth in my bones but this is also not clear as they are only showing up as sclerotic foci which cannot be ruled out as MBC.)

    I hope you don't mind me chiming in and want to make sure you are realize I am an anomaly. I wish you all many years of NO breast cancer.

  • Icantri
    Icantri Member Posts: 93
    edited May 2017

    Well said Beesie.

    Sadiesservant Thanks for chiming in. I am so sorry you have to deal with this again. You sound like you have a very positive attitude which we all know is so helpful. I appreciate you reminding us that your situation isn't necessarily how it usually goes. Sometimes we tend to hear a story and worry worry worry. Can I ask how you knew it had spread? Mets to the lungs or new primary cancer in lungs is one of the biggest things I am concerned about.
  • Tappermom383
    Tappermom383 Member Posts: 643
    edited May 2017

    This is a fascinating discussion. I'm impressed with the depth of knowledge you ladies have. What about us who were diagnosed at a later age (I'm 70)? Do I get a pass on a new primary as I'm older or is there a chance it would develop sooner than in younger women?

    The discussion made me think of a woman in my fitness classes. She had BC 30 years ago at a young age and has been very supportive. Well, she just had a biopsy in the other breast and is awaiting results.

    MJ


  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited May 2017

    Hi Icantri,

    I came home from a business trip at the end of October with the nasty cold/flu that was making the rounds and could not shake the cough. Even though several people were complaining about the cough hanging on for a long time I went to my GP after 3 1/2 weeks wondering if it could be pneumonia. Given my history, he ordered a chest X-ray and there was a bit of fluid showing in the right lung. He then ordered CT scan which I had weeks later on December 23rd. At this point there was a lot of fluid in the lung and I was having issues with shortness of breath when I exerted myself. A thoracentesis was ordered for December 28th. This is when the found the BC cells in the fluid.

    I do try to stay positive but there are ups and downs of course. Apparently the fact that I am so many years out from my original diagnosis is a positive sign that I should do well with treatment.


  • Fiddler
    Fiddler Member Posts: 128
    edited May 2017

    fascinating discussion! I have been off the board for a while as I am feeling better but this has been a question for me. I had no cancer in the lymph nodes but a tumour a little on the larger side and HER 2 +. My onc says I have a 20-25%chance of "recurrence." I was wondering about all this since I was node negative. I had been thinking 20-25% was pretty high till a fellow survivor said that's 75-80% chance of NO recurrence but it is still a little hard to see it this way for me. HER 2 and grade 3 means it was aggressive. Also my onc said HER2 ismost likely to re-occur in the first two years.

  • soozy
    soozy Member Posts: 10
    edited May 2017

    I read that cancer cells can remain dormant for a long time And then something triggers them to wake up

  • Herculesmulligan
    Herculesmulligan Member Posts: 175
    edited May 2017

    I learned a lot on this thread. Thanks ladies. Chisandy I hope you teach in some capacity. You are excellent at it...

  • carmstr835
    carmstr835 Member Posts: 388
    edited May 2017

    Very interesting indeed. I am thinking about how these cells move undetected. I have my personal opinion that anytime you manipulate the tumor, it runs a risk of shedding a cell or 2. It is my opinion that needle core biopsies spread those cells. I am pretty sure if I had been successful in obtaining an excisional biopsy as opposed to the 6 passes they did with the needle core biopsies, I would not have the lymph node involvement and extra nodal extension.In just 9 days after my biopsy a previously undetectable tumor grew to 2.6cm in my lymphnode and now my treatment is much more involved. Anyone else believe these biopsies spread our cancer

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited May 2017

    carmst, I had a core biopsy as well and asked my BS that question. She said there is a risk of cells getting loose, but it is low. When she did the LX a month later, she remarked how much the tumor had grown...eh. Not sure if the BX contributed to that or not. I kind of wish they would have just done the LX from the get go, but it's done now. I worried about the same thing and did take that into consideration when deciding my treatment plan. Hopefully, everything I did will keep it at bay. I hope yours does, too.

  • carmstr835
    carmstr835 Member Posts: 388
    edited May 2017

    Thanks keepthefaith, I told myself there is no purpose in the 'what if's', but if I had it to do over again, I would have waited and found a surgeon to do the excisional biopsy. I was scared and pushed into it by the breast cancer center staff, radiologist, and surgeon. I believe they meant well and totally believed it was my best course of action. I disagree, however and the purpose in revisiting it is to inform others that might not be intimidated into this course. Breast cancer is so individual, and not everyone has the same clinical presentation, but for me, I believe mine would have less of a chance of spreading to the nodes, if I had not had needle core biopsies.

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