Receptor Status Change?

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guidinglight
guidinglight Member Posts: 16
edited August 2016 in Stage IV/Metastatic Breast Cancer ONLY

Hi all!

My mom was diagnosed in December 2012 with MBC to bones. She is ER+, HER2-. She was on Leterzole until fall of 2015, switched to Tamoxifen, but progression to liver was shown. Then tried E/E combo, continued growth in liver. She is now trying Ibrance and Faslodex.

Just wondering if anyone has has receptor status change during progression? She doesn't seem to be responding to estrogen blockers now, and the progression to liver is concering. Makes me wonder if she is HER2 positive. I asked her onc about biospy, but she said its rare for it to change status. But it does happen!!

Thoughts? Advice? Experiences?

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited July 2016

    Hello Guidinglight

    I would push for the liver biopsy. One of my very dear friends had ER positive breast cancer for many years. First in one breast and then it showed up again in the other breast. After several years, it came back with a very large tumor in her liver and a grim prognosis as she was then not responding to the estrogen blockers. They did a biopsy and it came back strongly HER2 positive and ER negative. The doctors where actually very happy as she then had the ability to get Herceptin. She did chemo with Herceptin and achieved NED and then took Herceptin only for five years and stayed NED. My oncologist has told me several times that ER positive is more common in the bones and HER2 is much more common in the organs. I would push for the biopsy. It can make all the difference in her treatment.

    Jennifer

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  • guidinglight
    guidinglight Member Posts: 16
    edited July 2016

    Thanks, Jennifer. Mom is afraid to have the biospy. Is it painful? She is afriad it will make the liver spread more.

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  • GG27
    GG27 Member Posts: 2,128
    edited July 2016

    I too would have the biopsy. I had a bone biopsy which is supposed to be more painful, but I found that the radiologist was very careful to make sure that the area was numbed completely before starting, just like having dental work done. It only took a few minutes & my husband & I left on a driving holiday immediately from leaving the hospital. Absolutely no after effects or pain. As Jen says getting a biopsy can make all the difference in treatment options & outcomes. good luck, GG

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2016

    I had a transjugular liver biopsy and it was not painful, but I think it depends on where they are trying to biopsy as to whether this can be done or not.

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  • patti4511
    patti4511 Member Posts: 180
    edited July 2016

    I was on Falsodex on and then I stopped responding to it i went from her2- for the last 5 years to her2 + which went to my liver I had the Y90 procedure done on my liver and that dissolved the mets,in my liver I have been on taxol plus,h&p for almost a year this last scan showed minor progression which now my Dr put me on kadcyla because he wants to put me in a trial and said I need to be on this,drug first so hoping it does it thing

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited July 2016

    My Onc also said it is "rare" for HER status to change. But I have heard of at least 5 or 6 women on here so far for whom the status has changed. My liver biopsy was uncomfortable for one or two minutes at the worst. They used a numbing spray on the area. But as GG said, afterwards I was fine. When I run out of AI's I will push for a second biopsy...

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  • guidinglight
    guidinglight Member Posts: 16
    edited July 2016

    Thanks everyone for the advice! We are hoping ibrance and faslodex works, if not, I think a biopsy is necessary. She has 3 lesions on the liver and onc said they don't do ablations it tumors are in other areas. Doesnt make send to me!

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  • zarovka
    zarovka Member Posts: 3,607
    edited July 2016

    I probably only have ~5 lesions on my liver and nowhere else and they are not doing ablations. Metastatic cancer is usually driven by micro metastasis not tumors. Micro metastasis is not picked up in scans. IOW, once you are stage IV, the horse is out of the barn and your body has cancer everywhere.

    Therefore, in stage IV, zapping tumors generally doesn't accomplish anything unless they are interfering with a body function or causing pain. There are a lot of exceptions, particularly when the cancer has not spread much. Oligometastasis is a hot topic. But, in general, in stage IV you are looking for a response to systemic therapy. That can be stable tumors, shrinking tumors or disappearing tumors. Any response to treatment has about the same survival outcome. The good news is that we are finally getting some new systemic therapies and you will find a lot of women on this thread responding to these therapies for years. Ibrance is one of them. Glad you have access to that drug.

    But you MUST attack with the right tool. Get that biopsy or you don't know what she has in her liver. It's no spa treatment, but my liver biopsy was not bad. Better than getting a bikini wax, worse than a facial, if that helps.

    >Z<

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited July 2016

    LOL! Good comparison Z!

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited July 2016

    My liver biopsy was not horrible. I was more just freaked out about having cancer there and getting a needle between my ribs while awake. They gave me something to make me relax (it didn't) and they went in twice .. they missed on the first try. But it wasn't as awful as mind my anticipated it would be. This is just my opinion but I would not want to take a chemo drug without knowing for sure. if it did flip to Her2 I would really want to be taking the right drug instead of "trying" one and seeing. It is not that invasive or painful of a procedure.

    Jen

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited July 2016

    Three free full text medical journal articles on the topic of new biopsies in MBC:

    Results: Of 121 women undergoing biopsy, 80% could be analyzed for receptor status. Discordance in ER, PgR, and HER2 between the primary and the metastasis was 16%, 40%, and 10%, respectively. Biopsy led to a reported change of management in 14% of women (95% CI, 8.4% to 21.5%)

    http://jco.ascopubs.org/content/30/6/587.full

    xxx

    Results: The discordance rate for ER was 17.7% (2-sided p=0.0039) with 9.7% of tumours changing from ER-positive to ER-negative and 8.0% changing from ER-negative to ER-positive. The discordance rate for PR was 37.3% (2-sided p<0.0001), with all of these tumours changing from PR-positive to PR-negative. No significant discordance for Her-2/neu was found.

    http://ar.iiarjournals.org/content/29/5/1557.full

    xxx

    Results: Forty women were enrolled; 35 of them underwent biopsy, yielding 29 samples sufficient for analysis; 3/29 biopsies (10%) showed benign disease. Changes in hormone receptor status were observed in 40% (P = 0.003) and in Her2 status in 8% of women. Biopsy results led to a change of management in 20% of patients (P = 0.002).

    http://annonc.oxfordjournals.org/content/early/200...

    xxx

    There are other articles, but I chose free full text ones that you could show to reluctant physicians when seeking a new biopsy and possible change in treatment management.

    Use google scholar or PubMed to find more articles.

    healing regards, Stephanie

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  • Becs511
    Becs511 Member Posts: 303
    edited July 2016

    I am a rare case but my original biopsy showed the tumor in my breast (which disappeared on Taxol, Herceptin and Perjeta) to be highly triple positive. When it started to grow back after I stopped the Taxol, we biopsied it again, and it was now triple negative.

    The doctors think it was there the entire time (two different mutations of the same bad gene) but when we stopped the chemo it started to grow to where it was visible on a scan. Apparently none of my docs had ever heard of something going from positive to negative, only the other way around, which is why they think it was two different primaries at the same time.

    While I can't give any advice to a liver biopsy, I can only tell you it is best to have 100% certainty on what you are dealing with, so you know the best way to attack it.

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  • grahaad1
    grahaad1 Member Posts: 36
    edited August 2016

    My primary was ER and PR positive but my mets are triple negative.

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  • Dvdsp
    Dvdsp Member Posts: 43
    edited August 2016

    My mums primary was ER- PR+ Her2-; mets are Er+ Pr- Her2-

    Her HER2 status hasn't changed but her change was remarkable for treatments.

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