Diagnosed mets after stage I-III with no positive nodes?

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pesky904
pesky904 Member Posts: 402

Has anyone been diagnosed with mets after completing treatment for a stage I, II or III with no lymph node involvement? I had TNBC stage III due to sheer huge size and aggressiveness of tumor (almost 7cm at diagnosis, grew to 10cm on Taxol), but the cancer was not found in my lymph nodes. I failed Taxol and did not have a complete response to AC chemo, still had a 3cm tumor at mastectomy and they got less than 1mm margin. I had sentinel node biopsy at mastectomy where they only tested two nodes but they were both cancer-free.

I thought that meant there's virtually no way I could get mets since the original cancer is gone and it was never in my lymph nodes. But my oncologist recently told me that my risk of recurrence/mets is actually quite high.

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  • KBeee
    KBeee Member Posts: 5,109
    edited February 2019

    I know many people diagnosed with mets with no cancer in the lymph nodes. We do lots to reduce our risk, but nothing eliminates risk. Hoping you get your results soon.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited February 2019

    My understanding is that it's possible for cancer cells to pass through the lymph system without "setting up shop" there and travel to elsewhere in the body. They can also travel through the bloodstream.

    Finding cancer in the lymph nodes shows that it has at least gone that far, but not finding any doesn't guarantee that it hasn't. Does that make sense?

  • pesky904
    pesky904 Member Posts: 402
    edited February 2019

    It totally makes sense and thank you both for replying. I just got my bone scan results back and there was an area of increased uptake in my right hip. Not arthritis because they also saw some arthritis elsewhere. They are ordering an MRI.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited February 2019

    All of these things are so nerve wracking. I hope the MRI gives them clear information - the benign kind!

  • Polly413
    Polly413 Member Posts: 124
    edited February 2019

    There is an article on this site explaining that cancer in the axillary lymph nodes is different from cancer in the blood/lymphatic system. I have read also that contrary to common belief, cancer does not necessarily travel from the axillary lymph nodes to distant areas of the body and so removal of or radiation of the nodes does not prevent distant mets.

    Presence of cancer in the axillary lymph nodes is important nevertheless because it is an indication of how aggressive the cancer is. It was explained this way: if your car is speeding, the speedometer shows how fast the car is going but removal of the speedometer will not slow the car down. Similarly removal of the axillary nodes will not slow down the cancer as it can spread through the blood/lymphatic system. So I think our obsession with lymph nodes being positive or negative is somewhat misplaced. Real question is whether a cancer cell or cells have escaped the breast through the blood/lymphatic system -- this can happen without going through the axillary lymph nodes at all. So radiation may kill cancer cells in the breast/underarm nodes but will not kill them elsewhere. Chemo is the treatment with the best chance of getting those small escaped cells. That is my understanding. Polly

  • pesky904
    pesky904 Member Posts: 402
    edited February 2019

    Thanks Polly413. Well I had 8 rounds of Taxol before we realized it wasn’t working and my tumor was growing. But then I had 4 rounds of neoadjuvant AC and 2 doses of adjuvant cisplatin and 8 rounds of Xeloda. So hopefully that killed them all!

  • vlnrph
    vlnrph Member Posts: 1,632
    edited February 2019

    The concept of tumor dormancy is something to keep in mind. In brief, some cells which leave the breast (no one dies from early stage BC), remain untouched by chemo because they are not in a growth phase. Then, after hiding out for a while - perhaps years or decades later, they begin to multiply. The mechanism by which this occurs is a topic for research.

    Also, our immune systems are tracking down and, hopefully, destroying mutants before they gain a foothold.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited February 2019

    any news pesky??

  • pesky904
    pesky904 Member Posts: 402
    edited February 2019

    Not yet. They put the order in for the MRI on Friday but today is a holiday so I’m hoping to hear tomorrow about scheduling it. Thanks for asking!

  • cleokeep70
    cleokeep70 Member Posts: 13
    edited February 2019

    I'm confused- I thought only stage I were node negative. Is there such a thing as node negative stage II or IIl?

  • pesky904
    pesky904 Member Posts: 402
    edited February 2019

    I am classified stage III due to being triple negative with a more than 6 cm grade 3 aggressive tumor. I'm not sure if that's specific to Dana-Farber, where I'm treated, or if it's the norm.

  • pupmom
    pupmom Member Posts: 5,068
    edited February 2019

    Cleokeep70, yes, and there are even people with node negative Stage IV. Cancer cells can get into the bloodstream, bypassing the nodes, and travel throughout the body.

  • cleokeep70
    cleokeep70 Member Posts: 13
    edited February 2019

    Thank you Pupmom! I learn something new about BC nearly every day! So the stage you get based off the surgical pathology report can change depending on later discovery of lymphatic or vascular spread, correct? In my path report, for the lymphatic/vascular invasion it said "unknown". Not very helpful...

  • pesky904
    pesky904 Member Posts: 402
    edited February 2019

    cleokeep70, did they do any tests or biopsies when you were diagnosed to see if your lymph nodes were affected? When I was first diagnosed it was based on the huge tumor that could clearly be seen and felt. I was immediately deemed stage III just due to the tumor size after the initially biopsy. They saw no malignant features in my lymph nodes during ultrasound, but I still had a whole body CT and some other tests to check for possible mets. If they were unsure if you had lymphatic/vascular invasion, they should have done follow up testing. Have you asked about this?

  • cleokeep70
    cleokeep70 Member Posts: 13
    edited February 2019

    They biopsied a node before surgery which ended up just being reactive but negative for cancer. Then I had a sentinel node taken/tested during lumpectomy which was also negative. I will ask the oncologist about the lymphatic/vascular invasion part of the path report. I never had any additional testing done.

  • pesky904
    pesky904 Member Posts: 402
    edited February 2019

    Sounds like maybe they just need to update it. Still, they should have accurate documentation of everything.

  • pupmom
    pupmom Member Posts: 5,068
    edited February 2019

    Cleokeep, my report said regarding lympho/vascular invasion, "none noted," meaning that particular issue was not found. Maybe that's what your report means, just in different language. I would definitely call and ask though.

  • april1964
    april1964 Member Posts: 223
    edited February 2019

    mine also said unknown... perhaps they don’t always test for that...??


  • pesky904
    pesky904 Member Posts: 402
    edited February 2019

    I'm frustrated that I was just told my MRI is scheduled for Monday, March 4. If they were really concerned about it being mets, would they have scheduled it sooner?

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