TONS of residual cancer including lymph nodes/Resistance?

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Anonymous
Anonymous Member Posts: 1,376
edited May 2019 in Stage III Breast Cancer

Hello all, I just had my surgery after completing AC+T chemo prior to shrink tumor. My original tumor was 4.5cm which shrunk to 3cm, but its the lymph nodes that has me reeling. Prior to surgery all scans mri's and imaging including for sentinel biopsy moments before surgery showed nothing in the lymph nodes. I got out of surgery and they told me two sentinels had micrometasis...I thought okay, micro...not happy but micro...then I get final pathology back and it says MACRO in 3 sentinels and 2 axilla....then I got mad...I went through all that crap and not only are the bastards in there and I didn't even know it but Its MACRO...PLUS Lymph-Vascular for crying out loud....I asked my MO if I was on the Titanic and she said she couldn't tell me yes or no based on pathology only that she had thought more nodes would of been involved and was surprised only 5 were positive of the 16 taken....She as mentioned "chemo resistance" Is there anyone else out there that was still loaded after chemo and is a long way out? My Ki67 at biopsy was 5% and the mitotic rate was 1 back then too. Ki67 wasn't done again with final pathology. I didn't leave feeling too hopeful, only told we were going to throw the rest of the sink at it with rads and lupron/AI to get the percentage of it coming back as low as possible...I included a picture of my final pathology. Any encouragement at all would be helpful.

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Comments

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2019

    Hi!

    I'm so sorry that your cancer didn't respond well to chemo. Yes, it's certainly discouraging to have gone through all that treatment, only to have that much residual cancer left after chemo.

    I see from your report that you are 100%ER+/100%PR%. Is your cancer luminal A? If your cancer tested positive for a high percentage of estrogen receptors, and is luminal A, it's not surprising that it didn't respond well to chemo. My cancer was 95%ER+/95% PR+, and my radiation oncologist was shocked that it responded well to chemo. But, my medical oncologist believes that my cancer was driven more by its HER2+ nature than by hormonal receptors, so it probably was responding to the Herceptin/Perjeta. ((Hugs))

    "There's an ongoing controversy about the degree of benefit chemotherapy is likely to confer on patients with luminal A tumors. Some of the data, while mostly retrospective and exploratory, seem to suggest that patients with very high levels of ERs benefit very little from chemotherapy, if at all."

    See:

    https://www.medscape.org/viewarticle/560287

  • Lexica
    Lexica Member Posts: 259
    edited May 2019

    Hi Radagast - I'm not so far out, but I was in the same boat as you. There is a thread that was pretty active about residual tumor info (https://community.breastcancer.org/forum/80/topics/868272?page=3#idx_75). It's apparently pretty common with hormone receptor positive tumors and that hormone therapy is still a 'big gun' when it comes to treating our cancers. It doesn't feel like it. You go from getting chemo infusions and going into radiation to taking this tiny little pill everyday. Doesn't seem like a 'big gun' at all. There are some folks that have had additional chemo after finding residual tumor - I pushed for it but did not get it and was told that the AI would likely be more effective with less toxicity. I know it's tough right now, and it will probably be for awhile, but you aren't alone - there are definitely lots of us out there that haven't had great responses to chemo. Hang in there - and talk with your MO about the possibility of a clinical trial if you are still not comfortable with where you are treatment wise.

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited May 2019

    Hi, RadagastRabbit. I was almost 100% ER+ and did neoadjuvant TAC chemo. When the pathology for the mastectomy came back, there was still "extensive tumor emboli" in the skin of the breast. Yeah, I was bummed. But like others have said, my MO stressed how effective the aromatase inhibitor would be to keep the beast locked down.

    It took a lot of convincing but I got my MO to do six rounds of Xeloda and Navelbine. She believed it was unnecessary but I really pushed for it. I've been obsessively compliant with my Letrozole, and will probably take it for the rest of my life.

    So yes, I was still loaded with cancer after chemo, and I celebrate eight years this October. And I know there are many of us on the boards with similar stories. SB

  • stephilosphy00
    stephilosphy00 Member Posts: 386
    edited May 2019

    Hi,

    First, I was also diagnosed at ver young age without carrying negative mutation! I am sorry you are going through this now I totally how scary it is. My cancer was also almost 100% ER+ and PR+ with low Ki67 score (8% in the tumor and 7.5 in the node). I still had marco met in one node and 1.8 cm tumor in breast post ACT neoadjuvant chemo. So looks like your situation was similar to mine. My onc never mentioned I had chemo resistance and actually I had more chemo post radiation (5-6 months of Xeloda) based on a Japanese study. And now I am on Lupron + AI combo (stronger hormonal therapy for young BC patients) for 2 years and feeling well. Try not to get upset and disappointed about what your onc told you, ask her if you can get more treatment (Xeloda or Ibrance trial) after radiation based on various research on residual cancer post chemo. Take care and you will get through this!

  • ErenTo
    ErenTo Member Posts: 343
    edited May 2019

    I see that you’re grade 2 with mitotic rate of 1 which is slow growing. Not surprising that you didn’t respond to chemo as well. Typically grade 3 is more responsive to chemo. But hormone therapy is a very powerful tool, which I imagine you’ll be on soon

  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2019

    I agree with all the other posts. Chemo doesn't seem like an effective treatment for your cancers. Perhaps hormone therapy would work better. I would get a second opinion if I were you.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2019

    hello ladies, thanks for all the replies still wrapping my head around all this and getting ready for rads. I wish I had been prepared for this, tho I should of known better being 100% hormone receptor positive for ER and PR (I'm her2 negative)...I'm not quite out of the freaking out stage yet, but getting there. I was offered Xeloda but told it would benefit me 1 to 2% and that an AI/lupron would give me the biggest benefit over additional chemo. Still sorting that out, guess I will make final decision after rads. Thank you all!! :)

  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

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