No hormone receptor testing for DCIS?

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PinkRobot66
PinkRobot66 Member Posts: 5
edited January 2018 in DCIS (Ductal Carcinoma In Situ)

Hello all,


I was diagnosed with moderately differentiated papillary DCIS via core needle biopsy on 10/13/17. At that time, I was told my tumor was about 4 mm in size, so tiny.

I had a lumpectomy on 12/6/17 and went in today for my follow up and results.

The oncologist told me that all margins were widely clear and that it was true DCIS Stage 0. I asked her about hormone receptors and she said that wasn't necessary since it was so small and stage 0... I asked if I needed hormone therapy and she said it was not necessary. She said all I need after surgery will be 6 weeks of rads. She said that I would be followed by her and radiologist for the next 5 years.

I am new to this but I feel that my tumor should get tested for hormone receptor status? Is that right? My mind is all over the place. I wanted to speak up but I don't know what to say!

Also, if it helps, I am 28 years old and I had BRCA testing done and was negative for both.


*Just to clarify, my oncologist is also the breast surgeon*

Please help. Thanks in advance

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited December 2017

    I haven't heard of DCIS not being tested for hormone receptor status. Can you seek a second opinion? I'd ask the second opinion to request your tissue samples be sent for testing. Tamox is pretty standard for ER+ women. I agree with you, your tumor should have been tested.

    Are there others who've heard of not testing DCIS for hormone receptor status?

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  • stephincanada
    stephincanada Member Posts: 228
    edited December 2017

    I had 8 mm DCIS and it was not tested. If the DCIS was hormone positive, I would have considered going on an anti-hormonal. However, I was told that because the margins were large (4 mm), I didn't have to worry about it becoming invasive.

    I received chemo and radiation for the HR negative IDC found in the same breast.

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  • Sitti
    Sitti Member Posts: 230
    edited December 2017

    I haven't heard of not testing hormone receptor either. Actually, it was my biopsy sample that was tested for hormone receptor status. Is it possible your original biopsy sample was tested? If not, and you aren't comfortable with your BS not testing, I would agree with MTwoman about a second opinion.

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited December 2017

    Why have they not referred you to an oncologist? That is where I would go immediately

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  • Kkubsky
    Kkubsky Member Posts: 231
    edited December 2017

    My receptor status was tested from the biopsy sample. I believe it was verified after lumpectomy. I don't go to an oncologist any more as I was negative for ER/PR and that was really the only reason I would have to have gone to one. I am followed by my breast surgeon and rad onc.

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  • PinkRobot66
    PinkRobot66 Member Posts: 5
    edited December 2017

    My doctor is with the hematology/oncology department of where I go and she is also the breast surgeon. She is head of the breast cancer comittee in my local facility.

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  • Annette47
    Annette47 Member Posts: 957
    edited December 2017

    I would seek a second opinion. There are two main reasons for taking Tamoxifen. One is to prevent a recurrence of the original cancer in the even that some stray cells may have been missed. In your case they may be fairly sure that they got all of it, so aren’t too worried (and that is also the purpose of rads). The second reason, which I would think would definitely apply at your age is to prevent the development of a new cancer, either in the same breast or on the other side. That’s the main reason I would be looking into it if I were you - to find out if your body already has a propensity to make tumors that feed on estrogen, since at 28 you have many estrogen producing years ahead of you.

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  • Lorrainenj
    Lorrainenj Member Posts: 39
    edited December 2017

    hmmm. My bs also was vehemently against oncotyping my dcis as well. Why won’t they do that? She gave me the impression it was nonsense. I thought it was groundbreaking! Going to ask my oncologist. Maybe because we do not have invasive?

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited December 2017

    lorrainenj,

    The oncotype dx test is not for hormone receptor status. It is used to determine if chemo will be beneficial or not (and presume tamoxifen or AI use after chemo). If you have pure dcis chemo is never recommended

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  • brigid_TO
    brigid_TO Member Posts: 75
    edited December 2017

    Hi PinkR66

    My DCIS was tested for estrogen receptors only but that is a key bit of information that will help you decide on adjuvant hormonal therapy (tamoxifen or AI). There also is an Oncotype test specifically for DCIS and it will give you additional information on your risk profile.

    http://www.oncotypeiq.com/en-US/breast-cancer/healthcare-professionals/oncotype-dx-breast-dcis-score/about-the-test

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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2017

    I thought there was an oncodx typing for DCIS but I think the minimum size is 6mm. I think they use it for recommending radiation or further treatment.

    Read this and ask your doctor

    http://www.oncotypeiq.com/en-US/breast-cancer/pati...


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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2017

    The DCIS oncodx test score will give you an idea if radiation is necessary or if it will even work. Now that's interesting.

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  • BringOn2017
    BringOn2017 Member Posts: 101
    edited December 2017

    I had DCIS which was ER positive. I had bilateral mastectomy and so saved myself from needing rads. I also opted against Tamoxifen since the risks outweigh the benefits since I had both breasts removed. I'm not sure how it works out if you have lumpectomy and rads. Side effect profile includes thrombosis, uterine cancer, bone loss. You may want to look up the nccn guidelines on DCIS management.


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  • PNWBCHgirl
    PNWBCHgirl Member Posts: 115
    edited January 2018

    I am from Oregon and I had DCIS diagnosis in 2014 and had hormone receptor testing in my Pathology . I ended up not needing radiation or hormone blockers because they couldn’t get clear margins and had a Mastectomy after the lumpectomy.

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  • PNWBCHgirl
    PNWBCHgirl Member Posts: 115
    edited January 2018

    I am from Oregon and I had DCIS diagnosis in 2014 and had hormone receptor testing in my Pathology . I ended up not needing radiation or hormone blockers because they couldn't get clear margins and had a Mastectomy after the lumpectomy.

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