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Response to neoadjuvant chemo?

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Mom_of_twins
Mom_of_twins Member Posts: 124

Hi everyone! I'm just curious about your response (particularly for anyone who was ER+) to neoadjuvant chemo. I still had residual cancer in breast and nodes after chemo, and am concerned. I'm stage IIB, but could be IIIA as we don't really know how many nodes were initially involved due to the NAC.

If you don't mind, could you please share your clinical stage and the results of your pathology after chemo? If you had residual disease, did they give you additional treatment (e.g. more chemo) or did you participate in any clinical trials?

Thanks so much!!

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Comments

  • ssinuk
    ssinuk Member Posts: 63
    edited September 2016
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    hi Mom of twins, I was clinically stage 2B and my team thought there was only 'millimetres of disease' left in the breast with normalised nodes after NAC. I was horrified to discover after surgery il that in fact I had 5cm in the breast and 5 nodes positive. My cancer was strongly hormone positive and my MO said further chemo would not help. He was not concerned about the residual disease in the breast but he didn't like the positive nodes as that generally represents the cancer that is most aggressive and moving around - they want to see that stuff respond. However all the residual disease was classed as grade1 / low grade 2 which is not chemo responsive but 'should respond well' to hormone therapy. These situations are nuanced - it might be worth asking them to look at the Ki67 on the residual disease. If it is high then a conversation about further chemo is reasonable . If it is low take comfort from that and move on to hormonals. That's what we did when they found more disease in my IM nodes. However as you will see from my other thread I am looking at possibilities such as Ibrance. You may be a very good candidate for the PENELOPEB trial aimed at women with residual ER+ disease after chemo. My MO is a super expert on ER+ BC and he thinks Ibrance is v promising.

  • ash123
    ash123 Member Posts: 44
    edited September 2016
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    Hi mom of twins. I was stage 3 clinically with 5cm of tumor. I had three nodes at that time the biopsy came back normal. My radiologist who did the nodes was positive that they were coincidental and inflammatory. After NAC the last ultrasound showed 1.8 cm but it was actually 3.5cm with negative sentinel lymph node after surgery. They did not take out any further lymph nodes My ER was 99%. My MO expected 50-60-percent response but my remaining tumor was greater than that, however thereafter i had surgery,radiation and hormones. No trials or any further treatment was shared.

  • graceb1
    graceb1 Member Posts: 56
    edited September 2016
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    Strongly ER positive BC does NOT usually fully respond to chemo. Wish I'd been told that before surgery so I wasn't so surprised when I still had a lot of tumor left. My tumor flattened out but was still 5 cm wide. It did clear up some lymph nodes. That is why taking the hormones is so important if you can tolerate them.

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited September 2016
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    My tumor was 98% ER+ and I did TAC, then mastectomy. There was lots of residual tumor in the breast and I was dismayed. I talked my MO into additional chemo toward the end of rads--Xeloda and Navelbine. Who knows if it was needed or effective, but I'm still NED and kicking. Could be the Letrozole too.

  • minustwo
    minustwo Member Posts: 13,157
    edited September 2016
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    Mom - you might want to check this thread. Quite a few summaries there.

    https://community.breastcancer.org/forum/80/topics...

    I was ER/PR negative but HER2 positive. TCHP did not provide pCR (complete response) so after surgery I had AC before rads.

  • wintersocks
    wintersocks Member Posts: 434
    edited September 2016
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    100% er with 4 pos nodes by end of chemo had 7 sessions. The tumour was less hard and more 'squidgy'. I understand too, the er + does not do best with chemo alone and the hormones to be very important.

    I am, therefore very compliant with the meds despite some problems on them.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited September 2016
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    Hi SSinUK, my Ki67 in residual tumor was very low...it was 5. The original pathology showed the ki67 as 30, so it brings a little comfort thinking that chemo killed the very aggressive stuff. Thanks for the information. Also, my onc is recommending a Palbo trial (PENELOPE or PALLAS), but of course there's a 50% chance of getting drug.

    sbelizabeth, I have tried to talk my onc (and some others) into Xeloda, but they just haven't budged! She and the others said they would consider it if I was triple negative, and continue to tell me that the AI is my biggest defense, even more so than chemo. I feel like I would mentally feel better if I got it, but these are all opinions from top docs in the US. Any tips on how to get someone to agree?

    Thanks to the others for your response! It helps to know you're doing well and that I'm not alone!

    I'm so hoping that many others who had residual disease please respond!!



  • ssinuk
    ssinuk Member Posts: 63
    edited September 2016
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    my hospital (and the guy who pioneered AIs) led a study showing that low ki67 after chemo was a favourable prognostic indicator - so take heart. And leap at that trial. The treatment is specifically targeted at ER

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited September 2016
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    SSinUK, thanks so much!! That's very reassuring about the ki67, so I will hang onto that. And yes, I plan on participating in the trial--I think I'm going to do the PALLAS... It's two years versus one (PENELOPE), but actually requires less office visits.

    Anyone else out there who had residual disease after chemo? Would love to hear from you.

  • geewhiz
    geewhiz Member Posts: 671
    edited September 2016
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    I was stage 3a, with 8 of 13 nodes positive. I had a complete pathological response. I did surgery prior to chemo and still had bad margins. They did the chemo then went back in to re-excise. At that point he couldn't find anything but had marked exactly where the cancer had been so he simply re-scraped the area.


    So far, so good!

  • pennsygal
    pennsygal Member Posts: 264
    edited September 2016
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    Hi -

    My Ki67 was 60, I had a very small tumor, but very aggressive - at least 10 Level 1 and Level II nodes at dx. After chemo, my tumor was reduced by 92%, and had one positive node, and one with residual positive cells. I had ALND, and radiation after surgery.

    My MO told me that they generally don't expect a complete response for ER+ cancers. I asked about trials, but didn't qualify because there was not enough residual disease there. I'm currently on Femara.

    I hope this helps!

  • opt4life
    opt4life Member Posts: 111
    edited September 2016
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    No PCR for me either. My lump flattened out and two nodes were markedly reduced in size. But I still had 4.2 IDC/DCIS plus 3 pos nodes (with one having a few circulating cells only but still considered positive). KI-67 was 5 on one test and 18 on another. I had chemo, surgery, rads in that order and am taking Aromasin for two months now.

    My MO is recommending me for an Ibrance trial as she is very pleased with her Stage IV patients'response and would like to get some earlier stage patients on it.

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited September 2016
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    Aside from being ER+, a lot of you are Grade 2. Those cancers don't tend to be greatly responsive to chemo.

    I'm +++ with one aggressive cancer. Had a very favorable but not complete response. Did a Kadcyla clinical trial. Ended up with brain mets anyway.

    I think aggressiveness is more predictive than response....

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited September 2016
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    Thanks to all of you for the responses! Opt4Life, are they recommending the PALLAS trial? That's what I'm going to participate in.

    And also bumping, in hopes for more responses!!

  • mary625
    mary625 Member Posts: 154
    edited September 2016
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    Not nearly a complete response. Stage IIIC post chemo. ILC plus ER+. Never told that it was not going to be highly responsive. The tumor softened and decreased in size, and the largest lymph node became impossible to feel. No additional chemo recommended. Femara seems to be doing me well. I am here 5 years later.
  • opt4life
    opt4life Member Posts: 111
    edited September 2016
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    Yes, Mom of Twin, its the PALLAS trial and I signed papers today and will get randomized in next 2 weeks. My MO has 14 patients in trial so far and half have gotten the drug but of course all are followed for 2 years. I'm a bit nervous but I'm heartened that if I am in the drug group that I can or MO will request I stop if SEs are unmanageable.

  • fightergirl711
    fightergirl711 Member Posts: 190
    edited September 2016
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    Geewhiz's story is similar to mine - when I was first diagnosed it was projected as Stage 1, less than 1cm. After my lumpectomy in December the tumor was almost 3cm, I had over 6cm of DCIS, 4/4 nodes removed were positive and had extremely bad margins. After Taxol, Hercpetin, Perjeta, then 4x AC, I had a re-excision and another 8 nodes removed. I had a complete response. I still went with radiation and currently on Lupron shots monthly and Letrozole. Like Bad_User_Names, I had a very aggressive, naughty, +++ cancer.


  • Momine
    Momine Member Posts: 2,845
    edited September 2016
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    I had a very large (5cm), grade 2 ILC tumor. We did four rounds of FEC before surgery. The tumor shrunk to the point of beong undetectable on physical exam, but there was still a small area of active cancer in the path. After surgery I had four rounds of taxotere, followed by rads, ooph and femara indefinitely. I am still here five years later

  • reflect
    reflect Member Posts: 280
    edited September 2016
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    My pathology report from 9/14 surgery showed one tumor gone completely, one shrunk by 20%, no effect on + nodes at all. I had 2+ nodes by fine needle biopsy prior to neo ACT, there were 7/17 at surgery. I had a small (previously unseen) tumor as well. Good margins. They will redo testing for ER/PR/HER but I had one ER+PR+HER- and another PR- from biopsies.

    I also understood chemo not likely to be very successful b/c of ER+, in fact I was wondering why I was even doing it, but my MO said she had seen tumors "melt away". It's done anyway.

    I might feel thrilled but the 7 + nodes are sobering and puts me in IIIa land. I can't even update my profile with this yet and am trying to tell folks (especially mom) only the good news and avoid mentioning the nodes. No further chemo, I will sign up for PALLAS (probably) in 2 weeks. Got my anastrozole today. My MO doesn't do tumor markers or scans unless there are symptoms--TMs unreliable and scans don't help with survival. I am very curious about how I will move forward with this uncertainty.

    With all those tumors (3) plus 2 areas of ADH, I got a lumpectomy. Dana Farber surgeon and radiologists (2 radio seeds and 2 wire localizations pre surgery!) were amazing. My scar looks like a ?--to help plastic surgeon when he does his thing later, after rads.

    Interesting to see where others are.

  • bluekoala
    bluekoala Member Posts: 73
    edited September 2016
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    I started with ten centimetres of ILC (according to MRI). Stage IIa/IIIB.

    Did neoadjuvant double dose AC followed by taxol.

    Mastectomy + AND. No residual cancer.

    Met with my radiation oncologist last week, and she called it 'first prize in cancer treatment'!

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited September 2016
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    Thanks for sharing, everyone! Very informative.


    Bumping for more replies.

  • Hammie28
    Hammie28 Member Posts: 29
    edited September 2016
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    I'll add my experience. I DID have an aggressive ER+ cancer, grade 3 with a high Ki67. So the MO expected a good chemo response. Halfway through chemo I went for scans to check to see if it was helping since the tumor didn't seem to be getting smaller. Scans showed "some response". The post surgery pathology showed that my cancer did respond to chemo, but it wasn't a great response. Nodes that were palpable and showed up on scans prior to chemo were clear on scans and looked clear to my surgeon after chemo. But pathology reported 7/15 positive. My tumor ended up being 8cm instead of 6cm but did show reduced intensity. My MO explained that the reason could be that I had a lot of DCIS (which doesn't really respond to chemo)mixed into the tumor.

    I've done radiation and on Letrozole now (ovaries were removed). I'd love to know more about the studies you all are doing. I asked for more chemo, but my MO said it is not recommended for ER+ (but sometimes considered for triple neg)

  • meg2016
    meg2016 Member Posts: 188
    edited September 2016
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    This thread is very timely for me as I just got my pathology yesterday. I had THP/AC and from my MRI after chemo we could tell there was no CPR, but I was still hopeful the lymph nodes would be better because they had shrunk. I just found out I had 6 positive of 11. So I went from thinking I was a stage II to now a stage III due to the lymph nodes because my tumors are quite small. Mine are very aggressive, so even though I am highly ER/PR+, the hope was that the grade 3 would respond well to chemo. We could feel it working and surgery resulted in clean margins (I had one very near chest wall) so that is good I guess. I meet with my oncologist to talk next steps this Friday, so its great to hear about these trials as options. I am getting ready to begin radiation and hormone therapy as well. I'll see what my MO says about my options and share what I find out.

    reflect- I don't live there, but am traveling to Dana Farber for treatment as well.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited September 2016
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    Hammie and Meg,


    Thanks for sharing your experiences. It's so disappointing, isn't it? Meg, please reply back to this thread after you talk to your oncologist. I already got three opinions from reputable oncologists on Chicago, and they all didn't recommend more chemo (I specifically asked about Xeloda/Create-X) study, and they said they would only consider that if I were triple negative. They all did recommend the Palbociclib trials. I'm going to Mayo Clinic next week for my 4th and final opinion. I know it seems overboard, but I want to know that I did everything I possibly could. I will report back here after my appointment.

    Please share more stories!!!!

    Any longer term survivors with residual cancer after chemo out there? Would love to hear from you, too!!



  • reflect
    reflect Member Posts: 280
    edited September 2016
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    Hi all,

    How are you all doing? I'm still swollen and sore from lx and ALND and pretty down about being stage III. Started anastrozole 2 days ago, radiation planning appt on Thursday. At least chemo and sx are done!

    Here's a link to more info about the PALLAS trial, including locations for enrolling. This trial is for ER+/HER- Stage II and III. https://community.breastcancer.org/forum/73/topics...

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited September 2016
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    Thanks, reflect!! I wanted to start the hormonal therapy during rads, but they said I had to wait until after. Was supposed to get ovaries removed on 9/16, but had complications so didn't happen. Getting Lupron injection on Thursday to start ovarian suppression. Looking forward to hearing what Mayo has to say next Tuesday.

    And I'm hoping your soreness gets better soon! So glad that's behind you. Although radiation was tedious, it was totally manageable (at least for me). Just continually slather yourself with whatever cream they give you. It seems to really help.

    I'm definitely going to enroll in a Palbo trial. Still a little torn about whether to do PENELOPE or PALLAS.

  • Kay_G
    Kay_G Member Posts: 1,914
    edited September 2016
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    I had a large tumor and several lymph nodes according to biopsy and mri. doctor couldn't detect it after chemo. even pre surgery mri didn't see any cancer, but I was still stage 2 after the surgery pathology though. cancer was hiding in the dead cancer. pre surgery was grade 3, what was left after surgery was grade2. I think I was 35% er positive. just finished the course of Herceptin and rads after surgery and still on tamoxifen. doing well a little over 5 years out.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited September 2016
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    Kay_G,

    Thanks for sharing--that's very encouraging! Did you have positive lymph nodes after neochemo?

  • xyzeng
    xyzeng Member Posts: 7
    edited September 2016
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    I'm in Singapore so my options are somewhat different.

    I knew starting out that neoadjuvant chemo doesn't work very well for mucinous breast cancer. (There's a very useful thread on mucinous breast cancer here.) My MO put me on simultaneous neoadjuvant endocrine therapy but the effect was still modest. I do have supraclavicular and suspect internal mammary/mediastinal nodes that no longer show up on PET/CT scan.

    He thinks that the Create-X trial had sufficiently encouraging results for ER+ for him to put me on Xeloda (or rather a similar drug called TS-1 approved in Asia but not in the US). We are starting this and Prolia with rads, and I'm still on Femara too. He's also willing to give me Ibrance after TS-1 for maintenance. There are no palbociclib trial sites here so I'm grateful for that.


  • reflect
    reflect Member Posts: 280
    edited September 2016
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    Hi everyone,

    I woke feeling markedly better today and hope to get some things done I've been putting off (like paying the bills). I started using a sleeve for lymphedema prevention and to move the lymph out of my swollen arm. Maybe it's helping!

    Meg, how is your Dana Farber experience? I love my surgeon (Dr. Carter) but think I will stick with my local MO. The drive in is 2+ hours which isn't too bad, unless my appts are at 7:30am or at commuting hours! I stayed 2 nights at a nearby hotel for my surgery. I was very surprised to be offered lumpectomy by Dr. Carter when I met her for 2nd opinion. It was very detailed: they inserted two radioactive seeds to mark cancers, and two wire localizations to mark ADH. I think it's unusual to get lumpectomy with multifocal, multicentric disease and I am grateful. Having really large breasts helped I guess!

    Xyzeng, that's great that you can get Ibrance--it's not approved for early stage here (yet) , only stage 4. The trials are our chance to get it. Good luck!

    Mom, thanks for the encouragement about rads. My MO wanted me to start anastrozole before surgery even, but my BS disagreed. It is interesting how many different opinions there are. I have an appointment to sign up for PALLAS in a week or two.

    Onward.