Wrong HER2 diagnosis

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LilyGrace45
LilyGrace45 Member Posts: 4
edited May 2017 in HER2+ (Positive) Breast Cancer

I am an inflammatory breast cancer patient and was stunned to learn today that I am actually HER2/positive instead of negative as indicated in my breast biopsy six months ago. I had no reason to doubt my doctors and apparently they didn't feel the need for further testing. Anyway, I went through 5 months of the standard chemotherapy for IBC followed by a modified radical mastectomy a couple of weeks ago, and will begin radiation in a couple of weeks. Upon testing the larger tissue sample from surgery, the pathologists discovered I was actually HER2/positive. I should have been getting Herceptin all this time along with chemo (by the way, chemo did very little to reduce the size of my 5 cm. tumor. Now it makes sense why). My doctors want to start me on Herceptin now and continue giving it to me for a year. My oncologist said that this delay doesn't really matter in terms of my progress and prognosis, but I'm not sure about that. I guess I would rest a little easier if I could get confirmation from someone that it isn't "too late" for Herceptin to help me. (I am also ER/PR positive as well.) From what I've been reading it's not uncommon for HER2 to be misdiagnosed or difficult to determine. Any thoughts on how I should proceed now?

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  • meg2016
    meg2016 Member Posts: 287
    edited May 2017

    I had a similar issue but was tested to be Her2+ at first then a subsequent biopsy found me negative. This apparently is a lot more common than anyone would think. And my oncologist indicated different parts of a tumor can behave differently. They went ahead and gave me the Herceptin even with the mixed pathology. I don't know what kind of chemo you had, but in my case, I had AC so I stopped the Herceptin while on that because its too risky for your heart to be on both. I really only had 4 doses in that six months of chemo. But have had many more since completing chemo. So you may have not missed as many doses as you think. I definitely don't think its too late to help you.

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