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Is a chest wall recurrence inevitably stage 4?

My MO threw me for a loop yesterday. In May I had a 0.8cm recurrence 10 years after DCIS. Imaging showed no spread and my surgeon got wide excision in the lumpectomy. I finished whole-breast rads a couple of weeks ago, started Lupron in July, and will start letrazole shortly.

In yesterday's appointment, I asked what I thought was a throwaway question: so what was my final staging? (I had forgotten to ask at my previous appointment) I expected him to say Stage 1a or 1b. Instead, he said that because no breast tissue was found with the lesion, that technically it was a metastatic recurrence, or stage 4. However, he said my case is a gray area and he had not used that language with me b/c stage 4 has certain connotations that are not applicable to my case. (Me = lesion fully excised; no spread anywhere else; no need for any/ongoing chemo).

So he's kind of turned my world upside down with the words "stage 4" and I'm in a new season of anxiety. Google searches for chest wall recurrences are not encouraging, even if my case has favorable characteristics (>10 yrs to recurrence, no lymphovascular invasion, relatively small lesion) :(

How should I think of myself? Am I a metastatic patient? Am I something else? Ahhhhhhhh!

Comments

  • moth
    moth Member Posts: 3,293

    sunshinegal, that is a difficult question. How was the decision to not pursue chemo made? I too have read chest wall = metastatic recurrence. I mean the reality is, they stage people as 4 with even a tiny dot on a bone which they radiate - they still stage it as 4.

    What are you thinking about it?

    Just mulling this over, I think in your shoes I would want a second opinion because it is a grey area...but otoh there's a window of opportunity for aggressive treatment. Well, you've had the surgery which is one aggressive thing often denied to Stage 4 pts... but I'd want to know nothing has been left unturned..

  • sunshinegal
    sunshinegal Member Posts: 67

    No chemo b/c it was a small, hormone positive lesion which generally doesn't respond to chemo. They did not send for oncotype due to small size.

    I'm being treated at Dana Farber and they were the 2nd opinion. Both doctors I consulted recommended the path I am currently on.

    I think I'm having as aggressive a treatment plan as is possible, short of chemo...? I had whole breast rads with axilla and supraclavical nodes, and will be on a 5yr or longer antihormonal regimen, which seems right given the strongly positive receptor status of the recurrence.


  • moth
    moth Member Posts: 3,293

    well, it sounds like you're in good hands. There are some chest wall recurrences that I think are staged as locoregional so that sounds like what they've decided on based on what they're seeing clinically & how it presented.

    Must be a bit frustrating to be a grey zone but since you have a great team, I think with good follow up you can feel confident of your treatment plan.

  • sunshinegal
    sunshinegal Member Posts: 67

    moth, thanks so much for your input. I feel fine about the treatment plan; I think I'm mostly dealing with the emotional sucker punch of hearing "stage 4" applied to me. It's weird - nothing has changed about my actual situation in the last 48 hours except for going from thinking "oh I have a stage 1 recurrence" vs "oh I have a metastatic recurrence."

    I feel like the rug has been pulled out from me. I don't know whether to hang out in the Stage IV forum; I don't know whether to think "it's just a matter of time." It's so confusing because my PET/CT came back clear and we felt so celebratory at the time that there hadn't been any spread and it *wasn't* metastatic. I don't know what to think or how to feel.

  • sunshinegal
    sunshinegal Member Posts: 67

    I wanted to follow up here in case it's helpful for anyone else in a similar "gray area" after a chest wall recurrence.

    When I'm stressed, my go-to strategy is research. So I've been devouring academic articles and re-reading my path report closely.

    I found these definitions helpful (from this site: https://www.dynamed.com/condition/locoregional-rec...) (emphasis mine):

    "local recurrence only" defined as development of tumor in breast or chest wall/mastectomy site previously affected by cancer without involvement of the regional lymph nodes

    locoregional recurrence associated with distant metastases is considered a metastatic recurrence

    A lot of the studies I read that had really dismal prognoses for chest wall recurrences were lumping together (no pun intended) local and regional types of chest wall lesions, and those dismal studies were also 20 years old. There are more recent studies that are teasing out characteristics of chest wall recurrences that are associated with better and worse prognoses.

    Upon re-reading my path report I found the pathological staging of my lesion: rpT1b NX. I had somehow missed that before, but it tracks what I had thought the tumor was - stage 1b. I understand it's more complicated than that given that it's a recurrence and I opted not to remove more nodes, but I also understand why my MO hadn't used the stage 4 language with me.

  • Tninj
    Tninj Member Posts: 3

    Good morning.

    I simply wanted to share that I was also diagnosed with a chest wall recurrence in March of 2020. I had been in full remission from stage 2A IDC. My lesion was 5cm and involved my internal mammary node. I was not restaged, as I was told it is not considered metastatic if a PET returns clear, as mine did. Historically, there has been some discussion about whether it should be considered METS or LOCOREGIONAL. It really all depends on the individual situation and treatment plan. I too, have always been treated at Dana Farber- Boston. I consider my team to be exceptional. My case required a multi-pronged approach and my procedure required a thoracic surgeon due to the location. I had dense dose chemotherapy (because my cancer is triple-negative and response is likely), coupled with immunotherapy (which I continued for a full year due to the positive outcome of the Atezo trials). I had 4 ribs and a small portion of my sternum removed. My left pectoral muscle flap was cut and used to patch/protect the right side defect. The surgery was reasonably incident-free, and the outcome was a PCR (pathological complete response), as determined by the tissue examined. I chose to opt for pin-pointed radiation for 30 sessions to be sure the nodes were treated. I asked for the most aggressive plan with the most likely possibility for a cure. I have been in remission once again for 1 year and 6 months. I understand entirely the need to have certain labels applied to this disease. An innocent internet search will send you down a rabbit hole of gloom with just the change of a word. As challenging as I know it can be, try to be mindful of where you are right now. You have a great team, an individualized plan, and your perspective is all you can really control. I have two young children and while nothing is guaranteed, I'm determined to push forward with optimism and seek out support when my mind wanders. This is a great resource. I suppose my point is that regardless of the label, you are doing all you can to thrive and you deserve to take pleasure and peace in every moment . Happy to chat anytime. :)

  • sunshinegal
    sunshinegal Member Posts: 67

    Tninj, thank you so much for responding. My goodness, you went through the wringer surgery-wise! Thank you for understanding and for sharing what you've learned. I really like my MO at Dana Farber but I think he didn't explain my situation as clearly (or with small enough words for me to understand haha) as you just did.

    Congratulations on being 1.5 years out and doing well! Sending you good wishes for continued good health. :)

  • southernbreeze
    southernbreeze Member Posts: 1

    Tninj, would love to chat with you about your major surgery. I will have to undergo chest wall resection with rib removal and I can't seem to find any threads on that. Wonder what I need to search under. Was wondering how your surgery and recovery went. They are talking about removing at least 3 ribs for mine. Did they use mesh to cover the area? Did you get full mobility back on the arm where the surgery was? Any complications/chronic pain?


  • vlnrph
    vlnrph Member Posts: 480

    Southern, Tninj has not logged in for almost a year so she is unlikely to see your post. Try sending her a private message in order to get a response