DCIS and HER status

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Mommyathome
Mommyathome Member Posts: 1,111
edited January 2015 in DCIS (Ductal Carcinoma In Situ)

hi ladies,

I have noticed that some of you have been diagnosed with DCIS and were told your HER status. When I asked my bs about my her status, she said w DCIS I don't need or can't find out what my status is. What did ur bs say? How was your status determined? Does it affect whether or not u receive tamoxifen etc? What exactly is the her status?

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2014

    Herceptin receptor status isn't considered very important since chemo is not given for DCIS. It would only be given if you had invasive cancer.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited April 2014

    Mommy, Melissa is correct.

    Can you tell us anything more about yourself?  Biopsy, lumpectomy, grade. size of lesion, your age?   Are you in possession of your pathology reports?

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  • Annette47
    Annette47 Member Posts: 957
    edited April 2014

    My BS didn't order a HER2 test as due to the size of my invasive component (<1mm) and the rest (which was tiny to begin with) being DCIS, chemo was not going to be an option.

    Tamoxifen is not determined by your HER2 status - that is determined by a different test which checks for estrogen (ER) and progesterone (PR) receptors.    In people with larger cancers,  all three tests are usually run at the same time, but in cases like mine (and others with DCIS), they can run just the ER/PR tests.

    Edited to add - whether or not you will be recommended Tamoxifen does not rest JUST on the ER/PR tests.  If your cancer is ER/PR negative, then you almost certainly wouldn't be offered it, but if (for example) you have had  a BMX for pure DCIS (which cannot by definition have left the breast) then the risks of the Tamoxifen might be seen as too high to justify the small benefit you'd get from protecting the remaining residual breast tissue.   For people like me, who have had a lumpectomy so still have lots of breast tissue for cancer to set up in, the risk/benefit calculation might come out different.    For people who have had a BMX but still face a significant risk of distant mets due to invasive cancer, then the Tamoxifen might be given to try and prevent mets, but in the case of pure DCIS, that wouldn't be an issue.

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  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited April 2014

    Mommyathome: Unless there has been a recent change, pure DCIS is not usually tested for HER2/neu over-expression. Some women here have been participating in a recent clinical trial of Herceptin plus radiation for HER2+ pure DCIS. I've heard that more and more medical oncologists are trying to get testing for their patients, but I'm not sure if it has increased the numbers of actual patients that learn whether their DCIS is a 2 or 3 for HER2 expression. I posted a link below to an article about the preliminary results of the trial. I'm sure there's more info available if you did some digging. HER2 expression is measured by IHC (Immunohistochemistry) and FISH (Fluorescent in situ hybridization) by a pathologist. Tamoxifen is given for Estrogen Receptor positive breast cancer (ER+) and HER2 status has no bearing on Tamoxifen being given. Whether you are offered Tamoxifen is contingent upon factors such as ER positivity, whether you are pre- or post-menopausal, and if you have a bilateral mastectomy with pure DCIS. There may be other factors as well. HER2 status checks whether your tumor over-expresses a gene called Human Epidermal growth factor Receptor 2. The gene regulates healthy breast cell growth, but when the gene doesn't function properly, it makes too many copies of itself and it develops out of control. That's why it's called HER2 over-expression, because a small, controlled amount is necessary, but an abundance can be harmful.

    http://www.ncbi.nlm.nih.gov/pubmed/24202240

    I just want to clarify something Melissa posted above in case someone comes across this thread in the future and is concerned there may be a different type of breast cancer. Herceptin is the drug given to those whose breast cancer over-expresses the HER2 protein made by the gene. 

    I agree with what Infobabe said about your pathology report. If you have it and need some help deciphering it, we can help.

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  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited April 2014

    Hi. I had a stereotactic biopsy because there were calcifications found on mammogram. That indicated ADH. I then I had a lumpectomy which found ADH, DCIS and LCIS all in the left breast. The dCIS was I believe 2mm. I chose to have a BMx instead of the other option to do another lumpectomy since my margins were close, radiation and tamoxifen. I was ER and PR positive. 

    Thanks for all your information! Its so hard when your doctor tells you you don't need a test and then see other romenvw similar diagnosis that had it. I don't want to miss anything!!! This has been extremely difficult for me both emotionally and physically I couldn't imagine doing all this just to find out down the road that there's a reoccurrence!!! I would rather be proactive now so I appreciate your feedback and know now that I can let that go. I don't need to worry about HER status since it was DCIS. 

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  • lesliecusana
    lesliecusana Member Posts: 97
    edited April 2014

    Hey I'm jumping in on this thread after reading the clinical trial info! I'm having a hard time excepting surery and rads is all I can do for reoccurance! I had 1.5 cm DCIS high grade with necrosis and 1.1mm invasive tumor ER-PR-her2+3! Finished Rads 2/14 MO says no heceptin do to size! Looks like the trial was for non invasive dcis! So just don't know why they won't try if there was invasion!! I do have appt with HER2 specialty oncologist @ DUKE not sure if it's a waist of time but reaching for anything! My mom who was diagnosed before me by 1month and now is 3b IBC 25/28 nodes so I'm fearing the worst! BRCA -btw! 

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited April 2014

    I think, Mommy, you have taken charge and done all you can to preserve your life.  You have made all the hard choices.  No one can tell you for certain what is the exactly right thing to do because no one knows and in the end they are all personal choices.  I did ask you age, not important now, because if a woman is older, mastectomy is a much easier choice.  But you had already made it.

    Thanks for providing info.  It is hard for us to talk to someone when we don't know what they are dealing with.  I think you have left no stone unturned.  Best wishes.  I think you are on the right path.

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  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited January 2015

    Thought I would update information from this discussion from a featured article this week:

    http://annonc.oxfordjournals.org/content/early/201...

    One of the largest populations studied for this to date, publication suggests that HER2-positivity in DCIS patients confers increase risk for DCIS and invasive recurrence. Luckily, a rare-ish event (33% in this population, previous studies have noted similar prevalence, more likely in ER-negative patients http://meetinglibrary.asco.org/content/119547-135).

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