My triple neg grew on chemo

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Bugzey
Bugzey Member Posts: 3
edited August 2015 in Triple-Negative Breast Cancer

I was diagonosed with triple negative breast cancer on October 25,2013. I am 52.  My surgeon started me on red devil first to shrink the tumor so that she could preform surgery to remove without the drastic take all.  Well the tumor grew to over 4 cm after the first treatment.  I am pissed that this could not have been tested better before all of the sickness that I went through.  Now she wants to do a total mast of my breast and wants me to continue with chemo afterwards.  To say the very least, I am Leary of everything now.  I believe that there has been a mis-diagnoses of my condition.  Any suggestions?

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited January 2014

    Hi Bugzey, 

    I am sorry to hear about your diagnosis. I am not Her2 -, so am not entirely sure, but I believe that the standard procedure is to give chemo first. I did have neoadjuvant chemo (chemo prior to surgery) in hopes of shrinking the tumor enough to allow for a lumpectomy & while it did shrink the tumor, it wasn't enough to prevent the MX. The thing is that there is not really a good way of knowing how well a particular cancer will respond to chemo (in fact once you have the surgery there's no way of knowing whether the chemo is working or not). I know that this isn't what anybody would want to hear, it just is the reality of the situation. There isn't anything in what you have said that suggests a misdiagnosis - a diagnosis is based on the pathology report from the biopsy. Sometimes diagnosis does change once the path report from surgery comes back but that is unlikely to happen in your case. 

    It sounds like rather than a misdiagnosis, you may be unhappy with your treatment protocol (and generally it is the MO not the BS who determines the type of chemo), if this is the case, it's probably worthwhile to seek a second opinion on treatment. Also, you might want to post on the triple negative thread as they will have a much clearer idea of what the standard treatment options are. I am really sorry the taxotere didn't shrink the tumor - I know how sick that stuff made me and it is just nasty to deal with. But really , try to talk with some of the triple neg women because they will really be better equipped to give you some answers - I just didn't want to leave your thread 'floating'. 

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  • Luah
    Luah Member Posts: 1,541
    edited February 2014

    Neoadjuvent therapy is a very common approach; the fact that AC was not effective is unfortunate and upsetting, but it's good to know that, so another chemo regimen can be tried.  (I had surgery first and had no idea if the chemo was effective or not.)  Have you been treated with a taxane?...  because taxanes can be particularly effective for some TNs, and sometimes work when AC fails.    

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  • lostinmo
    lostinmo Member Posts: 922
    edited February 2014

    Every tumor is different, mine shrunk on the a/c and grew while I was doing Taxol. I don't think they know for sure which will work until you try it. Sorry and sending hugs.

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  • Nettie1964
    Nettie1964 Member Posts: 759
    edited February 2014

    I'm with Luah, I had surgery first, so I have no idea if the chemo did anything for me, only time will tell and that also sucks!

    Hopefully they will find something that works for your tumor!

    Good Luck!


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  • belleeast
    belleeast Member Posts: 653
    edited February 2014

    I just saw your post,I hope you got a 2nd opinion so you are comfortable with whatever you decide on. Myself,if it was me I would want it removed as soon as possible,whether lumpectomy or mastectomy with SNB. I would insist on a different type of chemo being used afterward,too. Good luck with whatever you choose to do.

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  • labtech
    labtech Member Posts: 1
    edited February 2014

    i know the felling. I had 2cm,  grade 3, triple neg. tumor with 3  positive lymph nodes. did 6 rounds of chemo to shrink cancer. did scans after 4 rounds and was told it was working. three weeks ago I had a modified rad. mastectomy with a 14.5 cm tumor and 15 positive lymph nodes. not sure what I am feeling other than scared.

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  • Carolben
    Carolben Member Posts: 287
    edited March 2014

    I had my mx first then AC chemo, they found mets in my lungs after rads (so they grew despite AC & rads).  Did Taxol which shrank the mets in the first 3 months, then they all grew back again after the 2nd 3 months of Taxol.  So now I'm on Xeloda and the scan after 3 cycles showed all stable (whew), am due for another scan at the end of the month, so we'll see if it's still working.

    Go figure - it seems to me that some cancers respond well to certain treatments & others not (it's a bit of a crap shoot), and it also seems to me that triple neg seems to respond to the different chemos for a limited period of time.  But I am hoping the Xeloda will keep me stable for a while yet.

    I don't know enough to comment on your treatment plan, Bugzey,  but if you are not comfortable with your present doctors, you're well within your rights to get another opinion, may be better for your peace of mind?  I'm sorry the red devil didn't work, I know the anger I felt that the mets grew despite going through all the crappy chemo. 

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  • talmal
    talmal Member Posts: 1
    edited April 2014

    I had my first treatment of AC on 2/14/2014.  Tumor shrank and grew back after first three treatments.  Switched to Taxol weekly and have third treatment tomorrow.  The tumor had been shrinking, but feels like it is now getting larger.  I have a lot of soreness in the tumor and under both armpits.  I am afraid the Taxol is not working. 

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2014

    Hi Talmal,

    Welcome to Breastcancer.org community. We sincerely hope that you get the support and help you need from the ladies here in the community. 

    We see that you have concerns about your Taxol treatment.

    This forum below may be helpful for you:

    Weekly Taxol Forum

    Sending you hugs and kind positive thoughts x

    ---Your Mods---

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  • Secondchance15
    Secondchance15 Member Posts: 20
    edited July 2015


    I've been browsing this site for a while and have just begun to post. I've found so many helpful posts and am thankful for everyone taking the time to help so many others. I know this thread has not been active in a while, but am hoping to resurrect it in hopes that previous posters may have updates on how they are doing or others may have had similar experiences to share. Here's my story:

    I was diagnosed with Stage IIB Triple Negative IDC in February of this year. One lymph node was palpable and showed up on ultrasound. MRI imaging seemed to confirm tumor size at ~ 4.5 cm and confirmed one, maybe two nodes to be involved. I immediately started chemotherapy withTAC and noticed a clinical response after just the first treatment that the tumor had changed significantly in size and feel. At my mid-treatment checkup, ultrasound showed that the tumor had begun breaking up and was ~ 50% smaller, and the main lymph node had gone down to normal size. Therefore, the TAC regimen was continued; my last dose was 6/10. On 6/15, I had post chemo MRI, which showed even more shrinkage down to 1.5 cm, and that the node was still involved. However, my breast began to swell toward the end, significantly in the week prior to surgery. I had a BMX with TE placement on 7/9. We expected the path results to show some residual disease, however were SHOCKED when we got the path results that the tumor area was MUCH larger than originally thought and that out of the 21 nodes that were removed, 15 tested positive for cancer. I realize imaging is not perfect, but how could that have been missed? Not all of it were viable cells, but the report did state that extensive disease remains. Or, was the TAC keeping it at bay, and suddenly when it stopped, the tumor was able to progress? Questions that no one will be able to definitively answer, but the news was very scary and discouraging. My reconstruction is going to be delayed to start chemo again, then rads. Will also need to get a PET scan to see if have mets and other tests done on the tumor to se if there are certain mutations or characteristics to better know how to treat me. So very worried now, though I don't regret doing chemo first... Otherwise would not have known those drugs would not be effective.

    I know this is not common, but just wondering if there are others out there that have experienced something similar or know someone who has, or has any insight to share?

    Thanks!!


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  • Tomboy
    Tomboy Member Posts: 3,945
    edited July 2015

    Just wondering how you are doing, second chance?

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  • Secondchance15
    Secondchance15 Member Posts: 20
    edited July 2015

    Hi Tomboy

    Thank you for asking. My PET scan showed 3 more nodes around the affected breast area (left breast) that are suspicious for cancer, and a very small nodule on the lower lobe of my right lung, however not on ,Assdf

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  • Secondchance15
    Secondchance15 Member Posts: 20
    edited August 2015

    Hi Tomboy,

    Thank you so much for asking. Got my PET results which found 3 more nodes on the affected side (left) that are concerning for local extension of disease. Also noted was a tiny right lower lobe pulmonary nodule that is too small to characterize by PET. So, my oncologist feels confident that it is still localized; hoping that is the case. I started this week on a regimen of weekly Taxol with Carboplatin every 3 weeks, and am hoping it works to eradicate this once and for all. While I have great confidence in my oncologist, I am seeking a second opinion. Although a serious and scary situation, I'm focusing on the positives in that if I had not turned so quickly before surgery, we would not have realized the drugs did not work and it may have been too late down the line. Also, would not have had a PET and would not have found additional nodes. We have something now to monitor to see if this regimen is working.
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  • Tomboy
    Tomboy Member Posts: 3,945
    edited August 2015

    Hi, SecondChance 15. I am still surprised to this day that I didn't get Adriamycin first, as I saw many women get 2 different and separate courses of chemo, but maybe that is a er/pr neg thing, I don't know. All I know is that taxol or taxotere plus carboplatin is an extremely effective combo chemo, they are using it more and more as a first line treatment. I am glad you got more thoroughly imaged too. Here is a link for you where you can find more women with triple negative, who I am sure, know more about that kind than me. But it's nice getting to know you, and I hope to see you around for a long, long, time! I am glad you found BCO and all the wonderful women you will find here. See you around! https://community.breastcancer.org/forum/72

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited August 2015

    I guess I am kind dumb today! I just noticed that you have already found it! Good luck with your second opinion place though.

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