Breast Cancer’s Hormone Receptor and HER2 Status Can Change After Diagnosis

AngieD
AngieD Member Posts: 493
I just read this today:

http://www.breastcancer.org/symptoms/new_research/20120620.jsp

Has anyone had this happen?

Angie

Comments

  • NancyJac
    NancyJac Member Posts: 91
    Interesting article. There
    Interesting article. There is one sentence though that just has me scratching my head and making me suspect of the rest of it because of it:

    "Right now, doctors don't typically do a new biopsy when previously treated breast cancer comes back as advanced-stage disease or when advanced-stage breast cancer grows over time. Treatment decisions are usually still based on the hormone receptor and HER2 status from the original breast cancer biopsy."

    This seems really weird to me. It implies that suspected breast cancer recurrence is being treated without pathological confirmation of diagnosis. That certainly isn't true in my case. It is the first thing that was done after a "suspicious" mammogram.

    Had anybody else been diagnosed and treated for BC recurrence without a biopsy?
  • missrenee
    missrenee Member Posts: 2,136 Member
    NancyJac said:

    Interesting article. There
    Interesting article. There is one sentence though that just has me scratching my head and making me suspect of the rest of it because of it:

    "Right now, doctors don't typically do a new biopsy when previously treated breast cancer comes back as advanced-stage disease or when advanced-stage breast cancer grows over time. Treatment decisions are usually still based on the hormone receptor and HER2 status from the original breast cancer biopsy."

    This seems really weird to me. It implies that suspected breast cancer recurrence is being treated without pathological confirmation of diagnosis. That certainly isn't true in my case. It is the first thing that was done after a "suspicious" mammogram.

    Had anybody else been diagnosed and treated for BC recurrence without a biopsy?

    Well, I just had a recurrence in January
    after experiencing back pain. After MRI, CT, Bone Scan, and PET scan--cancer mets were confirmed in T-12, spine, pelvis. Before any type of treatment, however, they did a bone biopsy at T-12 to confirm it was the same as my breast 2 years before. It was.

    My onc. told me exactly the same thing--the cancer could change in form and they have to know exactly what it is before they go throwing treatment at you.

    It doesn't seem like it would be prudent to do otherwise.

    Hugs, Renee
  • MAJW
    MAJW Member Posts: 2,510 Member
    missrenee said:

    Well, I just had a recurrence in January
    after experiencing back pain. After MRI, CT, Bone Scan, and PET scan--cancer mets were confirmed in T-12, spine, pelvis. Before any type of treatment, however, they did a bone biopsy at T-12 to confirm it was the same as my breast 2 years before. It was.

    My onc. told me exactly the same thing--the cancer could change in form and they have to know exactly what it is before they go throwing treatment at you.

    It doesn't seem like it would be prudent to do otherwise.

    Hugs, Renee

    When my cancer came back in my lymph nodes, the first thing my oncologist did was schedule a biopsy of the clavicle node...as awful as it sounds, we were almost hoping it wasn't my triple negative..that it was some other type of cancer....but is is, so all my treatments for the last year is to fight the TNBC...my current treatments with the Avastin+Carboplatin plus the brain rads have really been effective...as I posted a while back, my tumor markers were 98 in Feb. With this treatment they were run twice to make sure they got the same numbers...they are now 34 and according to my onc that is well within the normal range...he explained that for bc, the normal range is 0-39...I credit the Avastin....evidently the FDA is going to take another look at it for stage IV bc...I hope they do....

    Didn't mean to ramble...

    Hugs, Nancy
  • camul
    camul Member Posts: 2,537
    My initial was
    er, pr *, her2 -. When I had my recurrence 8 1/2 years later, the her2 - was now borderline, so I am now on herceptin along with my chemo. When it came back it had metastasized to my bones and skin.

    So apparently, it can and does change. Just hoping that with the herceptin, the chemo will kick in and do something.
  • AngieD
    AngieD Member Posts: 493
    camul said:

    My initial was
    er, pr *, her2 -. When I had my recurrence 8 1/2 years later, the her2 - was now borderline, so I am now on herceptin along with my chemo. When it came back it had metastasized to my bones and skin.

    So apparently, it can and does change. Just hoping that with the herceptin, the chemo will kick in and do something.

    Well, it sounds like you all
    Well, it sounds like you all have good docs who are on top of things! Since this was from an article in the Journal of Clinical Oncology, it's scary that they say most don't retest. I was shocked when I read it.
  • New Flower
    New Flower Member Posts: 4,294
    AngieD said:

    Well, it sounds like you all
    Well, it sounds like you all have good docs who are on top of things! Since this was from an article in the Journal of Clinical Oncology, it's scary that they say most don't retest. I was shocked when I read it.

    My results are still pending
    Angie
    Very good point. My Her2 evaluation is still pending and was not sent for Her2 until I asked for it.
  • SIROD
    SIROD Member Posts: 2,194 Member
    Positive to Negative
    Dear Angie,

    I did know these facts about triple positive cancers..

    In 1994, when I was diagnose with breast cancer all that was available were the hormonal factors. At that time I was 90% ER+ 0% PR-. Her2 was not an option back at that time, it didn't come out until after my diagnose in the late 90's. When I had my first recurrence they again sent the tumors away, this time it showed 95% ER+, 50% PR+ but Her2 negative. My next recurrence was to close in time to do tests.

    In 2008 when I recurred with widespread pulmonary, pleural metastasis with a pleural effusion, there was a need to retest my tumors as to much time had elapse between. My oncologist need to know these factors in order to treat me. I had a VATS biopsy (video assisted thoracic surgery). The tumors were again sent away, I was again 90% ER+ and 5% PR+. The Her2 came back as 2% and this was to low to be considered for Herceptin.

    I have never read of a women going from hormonal negative to positive. However, it might not have stuck to my brain. My research has been limited to my own diagnose of hormonal positive.

    I have read of women going from Her2 negative to positive. In fact, this did happen to one of my friends. Originally diagnose with ER/PR positive in 1994 too. No Her2 testing, as it was not available at the time. When her cancer returned 5 years later she was ER/PR negative but Her2 positive.


    Best,

    Doris
  • SIROD
    SIROD Member Posts: 2,194 Member

    My results are still pending
    Angie
    Very good point. My Her2 evaluation is still pending and was not sent for Her2 until I asked for it.

    Should be Automatic!
    In 1999 and 2008, I received copies of my Her2 status. They were from a different lab than those that were for hormonal status, both times. In 1994, there was no Her2 test. Herceptin came around 1998 and there was so much excitement with this news.

    I would think that knowing whether a tumor was triple positive would be automatically done in a recurrence that is a few years out. If I remember correctly, one of the items that came out of the conference for metastatic BC in Spain last fall was that there were no standard way to treat metastatic breast cancer. We do want our oncologist to fit treatment to us, but something like testing should be standardize.

    On another board, this woman who recently died kept saying her cancer was now so aggressive and it was. It did cross my mind that perhaps they should do a biopsy of one of them to see if it morphed into being Her2. If she was, Herceptin could have been used. I know she didn't have any biopsy.

    Doris
  • New Flower
    New Flower Member Posts: 4,294
    SIROD said:

    Should be Automatic!
    In 1999 and 2008, I received copies of my Her2 status. They were from a different lab than those that were for hormonal status, both times. In 1994, there was no Her2 test. Herceptin came around 1998 and there was so much excitement with this news.

    I would think that knowing whether a tumor was triple positive would be automatically done in a recurrence that is a few years out. If I remember correctly, one of the items that came out of the conference for metastatic BC in Spain last fall was that there were no standard way to treat metastatic breast cancer. We do want our oncologist to fit treatment to us, but something like testing should be standardize.

    On another board, this woman who recently died kept saying her cancer was now so aggressive and it was. It did cross my mind that perhaps they should do a biopsy of one of them to see if it morphed into being Her2. If she was, Herceptin could have been used. I know she didn't have any biopsy.

    Doris

    I assumed it should be automatic
    apparently it is not for Er/Pr positive. I am in a very reputable institution and there something wrong in my case management. I have to follow up on every test, scheduling is a nightmare. while samples can be resubmitted at any time, I will always have concerns about accuracy of my results. Since bone biopsy is a very invasive procedure, checking for Her2 was the only reason we decided to go ahead with it. I will talk to my oncologist on Monday.
    Thanks again to everyone for a good discussion.
    New Flower