Was your tumor retested for ER/PR/HER2 after neoadjuvant?

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TulipsAndDaffodils
TulipsAndDaffodils Member Posts: 80
edited February 2018 in Triple-Negative Breast Cancer

Hello ladies!

I have a question for you. I'm assuming you were ER-,PR-,HER2- based on a core needle biopsy at the time of diagnosis. If you then had neoadjuvant chemo and later went on to surgery, if you had residual tumor at the time of surgery, did your tumor get re-tested for ER/PR/HER2 receptors at that point?

Mine did not. So my MO assumes that it was still TNBC. I had a reasonable reduction in the size of my tumor from the chemotherapy, but not a pCR. So after radiation, I went on to have 6 months of Xeloda. I have been happily done with all treatment for several months now. But I continue to have this nagging question: could my residual tumor be ER+ at all, and if so, should I take Tamoxifen or an AI? I have heard that tumors can change receptor status after neoadjuvant treatment. There are different theories on why this can happen.

I do not WANT to take Tamoxifen or an AI. It is one of the few silver linings to TNBC that we don't have to continue treatment for 5 years ;-). But I do have this nagging feeling that I want to make absolute sure that I've done ALL that I can to reduce my risk of recurrence. So I really want my residual tumor tested.

My MO is being a little stubborn about this. He says that there is no evidence that even if the receptor status changed, treatment should be altered. I guess there haven't been enough studies done that would prove it to be helpful (?). But even without "proof", it sure seems logical that if the receptors changed to ER+, hormonal therapy could be logical.

He instead says he is willing to prescribe Tamoxifen/AI on the basis of prevention (more detail, but too long to type). But the thing is, I don't necessarily WANT to go on these meds. I just want my tumor tested. I will be perfectly happy to learn I am still TNBC and that I have NO reason to go on Tamoxifen/AI. I feel this test would ease my mind and I could happily know that there are no more tools available to me at this point, and I should not feel guilty that I haven't pursued all available means to reduce my risk. And if my tumor did change to ER+, I would suck it up and go on Tamoxifen/AI because it seems logical to me that those meds could possibly help.

I can't tell if this makes any sense. I see him again on Wednesday. Please respond if you had neoadjuvant chemo with residual disease and can share your experience. Please also respond if you didn't have neoadjuvant chemo but have some thoughts on whether my question/desire for the re-test seems rational or unnecessary. Don't worry about hurting my feelings if this all sounds irrational. I'd rather know if I sound crazy before I see my MO ;-)

Thanks so much,

Tulips


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Comments

  • gracie22
    gracie22 Member Posts: 229
    edited November 2016

    I am not TN and did not have neo chemo, but I think your question makes sense. Chemo can change receptor status (see link below on receptor changes post chemo) but I don't think that post-neo re-testing is typically done, and perhaps it should be. The link below gives a little info on neo changes so it is clear that it does happen. Anecdotally, from the board posts, it seems that it's more likely to turn positive ER/PR negative, and many posters with recurrences who were originally ER/PR+ seem to most often report the PR going negative in recurrent cancers, which are sometimes diagnosed as "new" cancers even though they may have been the same cancer altered by the chemo, particularly if they pop up in the original site of the tumor. I have not run across any that go neg to pos, but who knows.

    http://www.ncbi.nlm.nih.gov/pubmed/24183366

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  • gracie22
    gracie22 Member Posts: 229
    edited November 2016

    also wanted to add that since tumors are not the same throughout, there could be ER+ cells that are part of it (not due to chemo), just such a minor part that your tumor was judged to be TN. I would want to know what the biopsy of the remaining cells was, too, even if that is beyond "standard of care". My reading of this site over the last 2 years has shown me that where tumors are concerned, nothing is exactly 100%, and labs make judgment calls all the time of variable quality!

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  • TulipsAndDaffodils
    TulipsAndDaffodils Member Posts: 80
    edited November 2016

    Gracie, thanks so much for your responses! It's really helpful.

    The reason I am curious about mine switching from triple negative to ER positive is that I actually had 1% ER positive. But my doctor said since it was so very weakly positive, that it is TNBC. And I know chemo is supposed to be more effective on ER negative and fast growing cells. So I just wonder if maybe the chemo killed off a lot of my ER negative cells, leaving a somewhat more ER positive concentrated residual tumor. Just a weird concern/question that nags at me 😊

    Anyway, thank you so much for your response!

    Tulip


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  • TulipsAndDaffodils
    TulipsAndDaffodils Member Posts: 80
    edited November 2016

    So I saw my MO today. And after a hilarious, protracted debate, I won him over and my tumor will be re-tested. We are both stubborn people, so this took my very best debating skills to make it happen ;-).

    I should hear within 2 weeks what the results are. As I mentioned, I'm hoping and assuming it will still be TNBC so I can confidently skip Tamoxifen/AIs, with no guilt. I could get punished with a grey area (say that my tumor now comes back like 6% ER+….what do you do?), but I'll deal with that if it happens. And if it somehow comes back strongly positive (say, 35% ER+), which is doubtful, then I will learn to be happy that I have this extra tool to help prevent recurrence, and I'll go on Tamoxifen.

    So that's the story! I would still be curious to hear from others about whether your post-neoadjuvant-residual-tumor was re-tested or not, and what happened. So feel free to keep responding!!!

    Tulips


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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited November 2016

    Congratulations on successfully exercising your persuasive powers!

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  • njgirl13
    njgirl13 Member Posts: 32
    edited December 2016

    Hi Tulips,

    My tumor was retested after chemo. I am ER+/PR+ and I still had residual cells after ACT. PM me if you have any questions and hopefully I can assist you.

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  • naps
    naps Member Posts: 61
    edited December 2016

    I started out as ER and PR neg and HER2 pos at biopsy and then did get a sample of the residual disease at surgery tested after 6 cycles of neoadjuvant TCHP. This was what several Med Oncs had suggested doing if there turned out to be residual, however it is not officially recommended, and (because?) there is controversy and a lack of guidelines over what to do with the results of such testing. In my case, the surgical pathology tested as triple negative, and after a stressful flurry of second and third opinions, I ended up getting put on adjuvant A/C. I am about to finish that and then will resume the original treatment plan of radiation and continuation of Herceptin for the remainder of a full year's worth.

    What I was told was that this was an example of tumor heterogeneity. Maybe also cancer can be quite dynamic and change/evolve according to environmental pressures (e.g. treatment?)

    I believe only some of the path specimen gets stained for receptors, and of course a needle biopsy is just a small bit by definition...so perhaps you don't always necessarily get a completely representative sample (although apparently it is thought to be sufficient to base treatment decisions on!)

    Good luck to you.

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  • gracie22
    gracie22 Member Posts: 229
    edited December 2016

    Naps, that is really interesting and makes me think that residual testing may be a good idea in some cases, especially for people originally diagnosed TN or ER-/HER2+. Residual is expected with high ER+ tumors, but when aggressive "HR-" (and I use quotes here since all tumors are heterogeneous) has a good bit of residual post neo chemo, it makes you wonder why, since chemo typically works well on them. Hopefully, your HER2 change simply means that the Herceptin worked!

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  • Angtee15
    Angtee15 Member Posts: 209
    edited December 2016

    I had about 25% of my tumor remaining which was tested after chemo. I ended up even more TN with the HER 2 going from +1 at diagnosis to zero post chemo. It was also determined to be "metaplastic type" so I don't think I was ever destined for a pCR. And from what I read I got an unusually good chemo response considering the metaplastic thing. Which was oddly a relief since I seriously felt like I did something wrong. Like did I work too much during chemo? Did I eat too many antioxidants? Obviously not rational lol.

    What is the threshold for tamoxifen being helpful and worth the side effects?


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  • gracie22
    gracie22 Member Posts: 229
    edited December 2016

    Angtee, not sure of the threshold for tamox or AIs. One onc told me that he recommended it for virtually any evidence of ER since tumors are heterogeneous, but as a common sense thing it would seem that it would have limited value for those who are very mildly ER particularly with a small tumor and clear nodes. There is also a bigger question mark about the value of tamox and AIs for those who are mildly ER+ and HER positive, as "crosstalk" between HER2 and ER makes antihormals ineffective for roughly half of HER2 positive patients. In that situation, most patients will try the tamox/AI, but if side effects are bad they have a pretty solid reason to give it up--its efficacy would be very doubtful between their low percentage ER and the issue with HER2.

    http://www.karger.com/Article/FullText/354253

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  • Momy4ever
    Momy4ever Member Posts: 30
    edited February 2017

    Tulips, how was you result after retesting your residual tumor?

    my situation is a proof that residual tumors should be tested and not relying on the biopsy. My core biopsy came back er + 25% pr + 2%. I also had AC+T neoadjuvent chemo, my cancer was multifocal. After surgery, I had residual cancer remaining, path report revealed that my cancer is TN. I was chocked by this news and I asked my MO if they test all the tumors, he said no they only test the bigger one as they isuallall have same characteristics. So I have doubts wondering may be they tested a different tumor after surgery which came back tn and the tumor tested during the biopsy is still er + . Is it even possible to have both tn & er+ tumors ? or the er+ one has changed to TN.

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  • TulipsAndDaffodils
    TulipsAndDaffodils Member Posts: 80
    edited February 2017

    Wow, that is confusing! It's hard not to want to know exactly what's going on....

    I agree, I have thoroughly concluded that they should re-test all the tumors! But in my case, it didn't really end up mattering...mine was re-tested and remained TNBC. But it still mattered to me that it was tested again...I needed to know that for peace of mind! So now I am more contentedly enjoying being done with treatment ;-)

    Good luck everyone!

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  • PeachyJeanne
    PeachyJeanne Member Posts: 161
    edited January 2018

    I was originally diagnosed with ER+/PR+ HER2- (2 separate areas in the left breast). One node was biopsied and came back positive as well.

    I was treated with neoadjuvant dose dense AC+T followed by a unilateral mastectomy and sentinel node dissection.

    I had some residual left in the breast but 4 sentinel nodes came back negative.

    The "node positive prior to chemo / node negative after chemo" presented a question whether radiation benefits outweigh the risks or if it can be eliminated. Clinical trials are going on now. After agonizing about it, I agreed to join the trial. Yesterday, I was told I was randomized into the arm of the trial that would not receive radiation. I was ok with that. Actually felt the best I have in some time after struggling with deciding what to do.

    However, I got a call this afternoon that one of my tumor's path report from the mastectomy came back HER2+ after all. When I first got my path report there was a notation that it was HER2 +1 - +2 equivocal so was being sent for FISH. They were unable to get a proper reading from that tumor block and needed to test another tumor block. And that came back as being HER2 amplified.

    So now I am facing another year of treatment. 12 infusions (first 4 will be chemo with Herceptin and Perjeta and the remaining 8 just the H & P). It will be every 3 weeks.

    I've definitely said some bad words and I've definitely shed some tears this afternoon. I just can't believe it. I had my guard up the whole time waiting for those results and the dr's were saying FISH was probably just being done to be overly cautious and chances were low it would come back HER2+. They said it enough that yeah, I let my guard down. Needless to say it stings to get the news today.

    I'm giving myself tonight to cry and sulk and yell and have a glass of wine at the pity party.

    I'll gear up and get through this but that doesn't mean it doesn't suck. Another year of this tissue expander, too, I guess.

    Scary to think I may not have gotten treated for HER2+ if the residual tumor was not tested after surgery. I am looking for silver linings and I guess getting the treatment I need is a silver lining. Even if it means another year of this crap.



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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited January 2018

    Peachy, I was enrolled in a similar study ( maybe even the same one) where Radiation was randomized even for those with positive nodes after surgery. I went node negative after chemo. I opted for a BMX and when they looked at my “clean" breast they found a smallish tumor there too so I could not do the study. The very small amount of cancer left in my original tumor bed was not retested however. My team debated Radiation quite a bit but ultimately decided on it due to margins 1.5 on one side of the tumor instead of the 2mm they wanted as well as my high oncotype score. My BS did not want radiation, thought it was overkill, but we went ahead based on tumor board recommendations. I would have been like you and have been comfortable with either arm if I had stayed in the study. Having bilateral cancer drops me out of contention for the studies I was looking atbut I'm sure there are others if I looked harder. Good thing you were retested even if it means more treatment.

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  • Flynn
    Flynn Member Posts: 307
    edited January 2018

    It's so surprising to me that residual tumor wouldn't be retested.

    Peachy, I'm sorry, that's a tough break. I had my surgery 11/29 and It would be a blow to just be finding out that the plan has completely changed.

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  • Unstoppable
    Unstoppable Member Posts: 5
    edited January 2018

    Yes, my tumor was retested because I didn’t have a complete response. I had a very good response but still had 1.5 cm left (reduced from 5). I had another area and satellite regions that completely disappeared. My path said they automatically retested because the remaining tumor was unexpected (not the exact path wording). I think I was only retested for HER2 but it was still negative. I asked my MO and she said since the other areas completely disappeared and my tumor was responding they want to confirm it’s not also HER2. I need to look at my path again to confirm it was only HER2 they retested. Due to the residual tumor I’m now doing Xeloda.

    Peachy, so sorry to hear about the additional treatment. The pity party well deserved. My friend had the same situation happen to her. I totally get being blindsided. I was shocked when I was told about additional treatment with X. That was never mentioned as a possibility. The plan was ACT then radiation. I was so excited after my BMX when they said I didn’t need radiation due to clear margins and no lymph nodes. Then at my 3 month with MO she tells me I have the option to do additional treatment. After I recovered from the shock and got my head wrapped around more treatment, I also see it as a silver lining. Good luck

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  • Sharrose
    Sharrose Member Posts: 12
    edited February 2018

    Mine was retested because of partial response, it still came back TN. Sorry you have to go through more treatment Peachy. Unstoppable, my margins were clean and no lump node involvement and they still set me up with 35 radiation treatments. I have 2 more treatmentsto go. I am just happy to be almost done with treatment.

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