Metastatic diagnosis - lymph nodes only?

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I already tried to post this, but I don't think it went through. I'm just trying to come to terms with things. I was diagnosed with my second recurrence in June. Cancer is in the lymph nodes in my chest (hilar, subcarinal and mediastinal). My MO and second opinion told me this is stage IV but I'm having a hard time finding information on this. Metastatic is always defined as having “spread to other organs". So I feel kind of in the middle...I know the cancer has progressed but I also think that someone with mets In their lungs, for example, would think I'm not “really" stage IV. I know that sounds crazy. Just so many mixed emotions.

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  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2018

    hi lili,

    I am a little confused - one of your posts talks ( yes before I posted I tried to understand a little - your history does not show up)about your recurrence being right axillary but here I see chest. Did you have further scans to clarify the extent of your recurrence? I says this because there is a thread " shadow in the chest is a recurrence" not so active now but the op jackboo09 had presented with high mediastinal nodes ? close to internal jugular. Jackboo09 ( ER+|HER + from initial diagnosis) had Taxol followed by HP and is 18 months down I think NEAD on last scan but if you reach out you will get more information from Liz about her journey.

    Hang in there. Hugs!!

    😊🌷🐣

  • lili1977
    lili1977 Member Posts: 11
    edited October 2018

    thanks for your reply. I don’t post much so I have to figure out how to add the details below my post.

    Briefly, ER/PR+ IDC diagnosed in 2013. Sentinel nodes were negative. Bilateral mastectomy, chemo, tamoxifen.

    In 2015, axillary node recurrence. ER/PR and HER2 +. Chemo, radiation, Herceptin, Lupron/arimidex

    Now, new recurrence is ER/PR +. Enlarged nodes originally found on routine CT. Ibrance/faslodex/lupron

    I will read through the other post you mention, thanks for the suggestion.

  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2018

    I am truly sorry you are dealing with this, and words don't ever really cover it.

    For that thread it was a first recurrence, at 6 years and good response to Taxol/HP.

    I understand why your onc said Stage 4 but to be honest the more I read about this disease the more I think of it as multiple diseases each with its own continuum spectrum -now I don't make sense - but I am trying to say - I would probably be thinking like you too.



  • lili1977
    lili1977 Member Posts: 11
    edited October 2018

    thanks Wildplaces. I agree that it is such a continuum. One onc told me the same thing and Not to give too much thought to labels. Easier said than done

  • KBeee
    KBeee Member Posts: 5,109
    edited October 2018

    I think if the lymph nodes are on the other side, or perhaps certain chest ones, it's technically stage IV, but I agree with the others that you should not focus on that label. Sorry you are dealing with this though. Damn cancer.

  • Deedi
    Deedi Member Posts: 33
    edited January 2019
    I have just confirmed that I have reoccurrence in several of the mediastinal nodes tnbc. I am terrified. It is my understanding from my mo that this is stage 4. I am going for a second opinion at Vanderbilt on Tuesday. I need to learn more about my diagnosis. I don't think I have any good markers to help me with trials. They are working to schedule combine therapy abraxane and tercentrique. I will hopefully qualify for trials at Vanderbilt. Please share your experience. I am researching and grasping for next steps and answers.
  • lili1977
    lili1977 Member Posts: 11
    edited January 2019

    Hi Deedi

    I am really sorry you are dealing with this too. I guess your case sounds similar to mine, with mediastinal lymph node involvement. I can share my experience since October, I have continued to take Ibrance and lupron/faslodex. I had a follow up scan in November and the lymph nodes have shrunk!! So I am doing well and still hopeful. I still believe it is technically stage 4 disease because of the location of the lymph nodes, but as the ladies above say, it is a continuum and sometimes the labels don't tell the whole story. Good luck with your second opinion.

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

    Deedi, Hoping your visit to Vanderbilt goes well, and that there are some clinical trials you can try.

  • Les123
    Les123 Member Posts: 29
    edited June 2019

    I am triple negative IDC went through chemotherapy and unilateral and Clear margins no lymph nodes. My tumor marker after 2 1/2 years has risen to 47.7. I did it PET/CAT scan last week and here are the results. My new oncologist doesn’t seem too worried. I am scared to death. I am new to Denver with a new oncologist who just doesn’t seem to think any of this matters. Any advice?

    A metabolically active 13 mm short axis subcarinal lymph node is present on series 3 image 90 maximum SUV 3.1. This is new relative tothe prior study. There is mild left hilar uptake without CT correlate,maximum SUV 3.1. Otherwise, no additional metabolically activethoracic adenopathy is seen. Nodal metastatic disease cannot bedefinitively excluded. No additional PET/CT evidence for FDG-avid recurrent or metastatic disease.

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

    Les, you can post it on DJMammo's thread about interpreting your report to see if he can weigh in. It sounds like they cannot rule out cancer in the node, but it is not definitive. They use the term "metastatic" often when referring to cancer in the nodes, but it does not imply metastatic spread of cancer to bones, etc.

  • Les123
    Les123 Member Posts: 29
    edited June 2019

    I did reach out to him and this is what he said.

    I don't read PET CT studies but I can help interpret the report a bit.

    The findings from the surgery were expected.

    There are a few lymph nodes in the chest that are taking up some of the tracer but they do not describe them as enlarged or specifically indicative of metastatic disease. The are located just below where the trachea divides to go to each lung (subcarinal) and on the left where the vessels and the left main bronchus enter the left lung (left hilar).

    Other descriptions sound basically normal.

    You mentioned your nodes were negative at the time of the mastectomy. This makes the findings in the chest less likely to be from your breast cancer. They will either follow them or perhaps biopsy the ones under the trachea where I think they might be able to biopsy them with a scope (mediastinoscopy).

  • lili1977
    lili1977 Member Posts: 11
    edited June 2019

    Hi Les123, how frustrating to be dealing with a new oncologist while going through this. It is scary. In my case, I had to have an EBUS procedure to do the biopsy and I had to go to a pulmonologist to get the procedure done. Have you considered a second opinion? Good luck getting some answers.

  • Les123
    Les123 Member Posts: 29
    edited August 2019

    I did go get a second opinion. I flew back to San Diego and saw my original oncologist. My tumor markers came down and she ordered another pet scan. And it came back all clear. I feel like I dodged another bullet.


  • lili1977
    lili1977 Member Posts: 11
    edited August 2019

    great news Les123

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