Axillary node Recurrence

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juliechris
juliechris Member Posts: 7
edited September 2020 in Just Diagnosed With a Recurrence or Metastasis

Hi all. I’m only 2 years out from original diagnosis (DMX, chemo, Anastrazole, ovaries out). and I have a recurrence in an axillary node. I had pain, it lit up on a PET, and biopsy confirmed. Originally it was high ER/PR, this time it’s weakly ER and no PR. And it is grade 1 instead of 3. Which I guess means it won’t be as responsive to chemo. But surgery and radiation for sure. I started to research and saw some horrible stats for survival after an early local recurrence like this, especially if it becomes negative PR. I stopped looking because I got scared, which isn’t like me. Now tomorrow I meet with my surgeon, and I feel unprepared. Has anyone had an early local recurrence -especially in the nodes who can give me advice? Should I ask for another oncotype? Should I ask to get Foundation One cdx testing done? How often should I get scanned now going forward? I’m so sad and overwhelmed. :(

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2020

    I had a BMX in 2011 with everything clear so no other treatment. Exactly two years later in 2013, I had a swollen spot by my collar bone. Yup - local recurrence. I was originally ER/PR negative & that stayed the same, but now I was also HER+. 6 rounds of TCHP chemo first with no pCR. Axillary node dissection surgery with clean margins. AC chemo just to make sure everything is mopped up. Rads & then Herceptin for a year.

    I'm 7 years down the road from the recurrence - healthy & can pretty much do everything I used to do. I had scans after final treatment and a year later to make sure there was nothing still there. I insisted on a PET/CT before they took my port out after 3 years - nothing there. Really docs don't much like to scan for recurrence w/o symptoms. Because I have the Allergan textured implant (even though I am having no problems and I love them) the radiologist did a breast MRI at 5 years and is willing to do an ultrasound every two years.

    Because I was ER/PR negative, and it was some time ago, I can't speak about oncotype or Foundation One. I'm sure someone else will chime in. Hopefully it's contained to the one node or just the local area. Wishing you the best.

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2020

    I was PR positive the first time and PR negative the second (which occurred about 18 months from original diagnosis). I convinced my doc to do the oncotype (first doc refused saying chemo would be no help). Oncotype was 40, so chemo it was. I'm 5 years out from that now.

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited September 2020

    7 years later after bmx, showed up on other side. Surgery and rads. Now on ibrance letrozole, will be on that forever, unless progression. No mention of IV chemo. Scans if symptoms.

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  • juliechris
    juliechris Member Posts: 7
    edited September 2020

    Thank you all for sharing your experience! I just found out that the needle biopsy had no lymph tissue, so it’s a 1 cm cancerous lesion in the area of the lymph nodes but not in them. The plan is to remove it along with an undetermined number of lymph nodes and then do chemo again and radiation.

    They said it might have been there when they did the original surgery 2 years ago. But since no scans were done we wouldn’t have known? But the pathology is now negative PR and weak ER, does that mean as it grew, it changed and got smarter?

    I am in Wisconsin, but am thinking about taking out some retirement account money and going to Sloan Kettering to get a second opinion on treatment. Here they’re saying we are going to treat it like triple negative now, even though it’s 20-33 % ER positive and low grade. And my surgeon says she doesn’t actually think it’s low grade. Which is also confusing.


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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2020

    Did they test for HER2? My recurrence 2 years after BMX actually showed up as HER2+ and that changes the treatment parameters & give you more options. It wouldn't be a bad idea to get a second opinion.

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  • juliechris
    juliechris Member Posts: 7
    edited September 2020

    They said it’s HER2 negative. But who knows, maybe the surgery tissue will have more info. I had my records sent to Sloan K in NY today! I am relieved that they’re in network for my insurance. Thank you for your input!! <

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2020

    Please do check back and let us know about the second opinion.

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2020

    Sloan K is probably good, Mayo is good, UW Madison is good... any university based system is good, so don't hesitate to get multiple opinions. By treating it like it is triple negative, I think they mean that they are hitting it with aggressive chemo. Since it is ER positive, you should likely expect anti-hormonals to follow. Keep us posted.

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