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adgam2023
adgam2023 Member Posts: 7

Hello ! I am from Romania and I received the diagnosis of breast cancer in September 2021 (in both breasts / stage 4 with metastases in the axillary nodes / invasive ductal carcinoma / luminal B/ ER+ PR+ / HER2- / the genetic test is OK and did not show any mutated genes / I did chemotherapy, then radical masectomy of both breasts with bilateral axillary lymphadenectomy, then radiotherapy / I am currently being treated with abemaciclib - VERZENIOS, letrozole - LETROZOL ALVOGEN and goselerin - ZOLADEX.

For now, I have no metastases in other organs, with the exception of the axillary nodes. Sixteen lymph nodes were removed by axillary lymphadenectomy, all of which were positive for metastases, and 6 were beyond the capsule. I would be interested to know if under the treatment with VERZENIO there is a risk of spreading (metastases) to other organs or if the chances are higher that it will not spread. How does the spread to the axillary nodes usually evolve if the capsule has been exceeded in some of them? Can I hope that distant metastases will not appear for a long time, in other organs? Thank you !

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  • cyathea
    cyathea Member Posts: 330
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    bump

  • aprilgirl1
    aprilgirl1 Member Posts: 763
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    Adgam2023,

    It is challenging to have any invasive breast cancer dx. I had a breast cancer recurrence 11 years after stage 1 node negative cancer that was treated with chemo/radiation/surgery and 7 years of femara. My risk of recurrence was considered to be 7-9%. My recurrence was in my superclavicle nodes and beyond in my chest (hilar,medistinal, paracardial).). Like Exbrnxgrl mentions, in the US axillary node breast cancer is stage at 3C (I believe). My US Oncologists indeed consider my case stage IV due to the distant mets however, so far this has not spread to bones or organs and I am 3 years and 4 months on Ibrance/fulvestrant.

    I struggled with this dx early on as I have not met many people on this site that have distant nodal spread only and therefore, what does it mean for overall survival? I still don't have that answer. My oncologist told me in 2019 she didn't have stats on this but would compare it to bone only mets as far as prediction for Overall Survival. Here is a study I found in 2021 that discusses distant nodal disease but once again, I don't think they would include spread to axillary only (so this is more about further nodal spread in breast cancer). https://jamanetwork.com/journals/jamanetworkopen/a...

    Like Cyathea said, the first few years are the hardest. I found that as my scans were "clear" and I can see the tx is working, I am now used to living with this dx and feel pretty good. My next questions for my oncologist is why is Ibrance/Faslodex working and how long will it work. Unknown. I have concluded that at present, my cancer is somewhat homogenus as it has all responded the same. So far my cancer cells have not morphed and added somatic mutations. Of course, with the known reality that we live scan to scan. If (or when) something pops up and I change medication, I will have new side effects, possible decrease in quality of life and more unknown.

    I will tell you that with my recurrence in 2019, my oncologists have told me to not focus on the stage but on the treatment. I know they are using the cdk4/6 drugs with stage 3 patients now as well and hopefully that will keep cancer from spreading to stage IV. Hang in there! You are on a combination of meds that have proven to be very successful and I hope you do well on treatment and these drugs eradicate any evidence of cancer cells.

    In the past 3 years I have exceeded my career goals (I am still working) and have gone on some incredible family trips. Meanwhile, we all hang in there while new meds are in trial/approved to extend our lives and we hope and pray for a cure for us all.

  • adgam2023
    adgam2023 Member Posts: 7
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    Thanks for the information and encouragement! Health to you, to us, to everyone!

  • adgam2023
    adgam2023 Member Posts: 7
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    Thanks for the information and encouragement! Health to you, to us, to everyone!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,834
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    Addams,

    Unfortunately, our threads don’t actually thread so unless you address a member by name it is not clear who you are thanking or replying to.

  • nkb
    nkb Member Posts: 1,561
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    Adgam- you are on very good drugs that were not available a short time ago.

    I had Stage 3C- about 30+ positive nodes out of 40. I also had not completely clear borders from surgery. I got radiation to axilla and chest wall and then started Arimidex. 4.5 years later it metastasized to my bones. I heard whispers that my massive number of positive nodes was a very poor prognosis- but, not from my oncologist. No one knows how your body will respond.

    I would try to exercise daily, eat mostly good food, travel or do fun things- don't listen to people who want to give you a dismal prognosis - get support from friends, family, others with cancer,- learn enough to feel comfortable if you have to change treatments. Live your life