• I'm always surprised to see that some Whatnexters don't know whether their breast cancer is HER2, ER or PR positive or negative.

    Asked by SusanK on Monday, November 26, 2012

    I'm always surprised to see that some Whatnexters don't know whether their breast cancer is HER2, ER or PR positive or negative.

    Isn't this knowledge important? Don't we ask enough questions as patients? Are our doctors not giving us the information? Or do we hear the "Breast cancer" diagnosis and our brains don't hear beyond that?

    8 Answers from the Community

    8 answers
    • karen1956's Avatar

      Early in the process, you may not have this info.....I don't think I knew this, till after bilat.....when I got the final pathology report.....

      over 8 years ago
    • nancyjac's Avatar

      It is important to your oncologist to develop an appropriate treatment plan since there are targeted and hormone reducing/blocking treatments available for each of these. If all are negative, maybe some oncologists don't specifically point that out since the treatments when any of these are positive are not applicable. I found that the best way to stay in the loop is to ask for a copy any and all lab and test reports.

      over 8 years ago
    • Nancebeth's Avatar

      Like Karen, I also did not find out if my tumor was HER2, ER or PR positive or negative until my bilateral mastectomy when I got the path report back.

      over 8 years ago
    • JennyMiller's Avatar

      The Pathology Report tells the story -- and I agree that this knowledge is very important to understand your corresponding treatment. I saw a Movie on Lifetime Movie Network about the Doctor who developed Herceptin -- it was a great movie detailing all his efforts in getting the funding and conducting the clinical trials, etc. Because he endured, those patients who are HER2 positive have a tool for survival. I am not HER2 positive but I personally know some wonderful ladies who are -- and I thank God for this wonderful Doctor.

      over 8 years ago
    • Lindy's Avatar

      That information is crucial in knowing what our options are. I am high grade her2 only, Herceptin is not considered a cure but a proven buyer of time. My oncologist was not forthcoming, I actually got a copy of the pathology report before he did, provided him with a copy. What I learned was from my own research. Cancer care in America greatly varies and not just because of the "reasons" given in research papers. Some oncologists are just terrible communicators, not believers in the individuals ability to prevail. Mine was relieved that I figured out my own dire situation without his input. Be the leader in your own cancer care.

      over 8 years ago
    • Harry's Avatar

      I wonder if part of the problem is that patients are told their HER2, ER, and PR status without being told what those mean. I recall a question or two here from patients who knew their status but had no idea how that would guide their treatment. If the status is given no context, then it is just medical jargon gobbledegook and patients will, understandably, forget it.

      over 8 years ago
    • SMeridith's Avatar

      I did not find out my cancer type until after reports from surgery came back. My diagnosis was Triple Negative. From my first consultation with my oncologist until my first chemo treatment date, my oncologist carefully reviewed my lab resutls, conferred with two other doctors and determined that in fact I was HER 2 stage 1B. She totally changed my chemo drugs and of course, added the Herceptin. It is very important to question the type and to make sure the oncologist is really checking your path results. I will be forever grateful to her. Even though I developed Ejection Fraction of the heart after 8 months of the Herceptin, it was worth taking to get the HER2 under control. I am even having my port removed this week!! It is both exciting and a bit scary to lose that safety net.

      over 8 years ago
    • ImStillHere's Avatar

      People sign up for this site before getting their path report back. And also, I think that section of your profile can be a little glitchy. I've read a few times about people who can't get the right selection to appear on their profile.

      over 8 years ago

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