DCIS Neg ES/PR anyone else with this Pathology?

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Lolo62
Lolo62 Member Posts: 8

Anyone out there with Neg ES/PR?

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2018

    Yes--that's what I had two years ago. The good news is no Tamoxifen/AI for you. :-)

  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2018

    You might want to combine your two threads. The mods can delete one if you contact them. Traditionally you have a choice between lumpectomy and mastectomy. Outcomes are similar.

  • Lindabirdd
    Lindabirdd Member Posts: 6
    edited June 2018

    Yes, I was ER- PR- in March 2016. I was 53 when diagnosed. I chose lumpectomy with radiation and so far so good. Two clear mammograms. My lumpectomy was quite easy. My tumor size was just under 1cm after my surgery pathology with comedonecrosis. I had skin irritation during rads but nothing unbearable. I did not experience any significant fatigue throughout radiation and worked straight thru. I see my oncologist every 6 month.

  • Kkubsky
    Kkubsky Member Posts: 231
    edited June 2018

    Hi. Posted a reply on my old thread but here it is on this new one...

    I know there are other ER/PR negatives out there... Anyhow, it's been 2 1/1 yrs since dx and so far so good. Had lumpectomy and radiation. Sometimes it is hard to believe I had DCIS as everything has settled down for the most part. I have a small "dimple" where I had the surgery and sometimes my muscles feel a bit tight. I did have assorted weird pain and sensations for a while but not so much any more. I cleaned up my diet and lost 30 lbs but have gained about 8 lbs back...which I am trying to lose again. So far I am happy with my decisions. Time will tell....

  • 10402
    10402 Member Posts: 4
    edited June 2018

    I had DCIS that was ER/PR negative, however I also had extensive LCIS so I have to take an AI. Tried Tamoxifen but had issues with eyes and dizziness. Now on Arimidex. I was diagnosed in 2016. All mammograms clear so far.

  • Sitti
    Sitti Member Posts: 230
    edited June 2018

    Lolo62, I also had hormone negative DCIS. You can see by my bi-line it was also around the same size as yours. Feel free to PM me if you have any questions.

  • Mackadoo
    Mackadoo Member Posts: 10
    edited July 2018

    Yes, my dcis was ER and PR negative. Original core biopsy said it was weakly positive, but I had Oncotype DX for dcis, and it showed ER and PR well within the negative range, so no hormone blocking therapy. But it also said high probability of recurrence, so I had 3 week course of whole breast radiation. It was deemed high grade at biopsy, and Oncotype test reaffirmed this.


  • Justkeepmoving
    Justkeepmoving Member Posts: 106
    edited July 2018

    I had DCIS both hormones negative. Intermediate to high grade. Tumor size 5cm. My nipple was involved and I couldn't save it. There were other areas that lit up on the MRI that radiologists believed were DCIS or other type of breast cancer in addition to the one that was biopsied. My breasts were an A cup so any lumpectomy I had would basically be a mastectomy. That's why I chose mastectomy (and went all the way with a double mastectomy with DIEP flap reconstruction). I was too old to need my breasts (no more babies) and too young to live without them and I preferred not to have implants. Sometimes I wonder if I made the right choice as I'm still recovering from surgery 4 weeks out. I guess so. I think it was logical considering my situation. Many with DCIS can get away with lumpectomy (some even without radiation as I've read on these boards) and I guess I could have tried for lumpectomy of all of those areas but reconstruction would have been a mess. I don't know.

    What does your surgeon suggest?


  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited July 2018

    yep, me! 🙋♀️

    But, from what I understand, most pure grade DCIS is negative? I don’t know where I heard that, so it might be incorrect info.

  • BvH531
    BvH531 Member Posts: 4
    edited January 2019

    This is my first post on this forum - not sure if it is still active, but I also have the same pathology. I have 2 different opinions on how to treat my DX: surgeon 1 says lumpectomy and radiation, surgeon 2 found a second set of super tiny calcifications but can't biopsy them due to the location so is recommending a mastectomy (left breast only) so I am currently mulling over my options. Lots to learn. I meet with a radiation oncologist next week and hopefully can ask some additional questions. I am very appreciative of all these posts on a variety of topics.

  • BvH531
    BvH531 Member Posts: 4
    edited January 2019

    This is my first post on this forum - not sure if it is still active, but I also have the same pathology. I have 2 different opinions on how to treat my DX: surgeon 1 says lumpectomy and radiation, surgeon 2 found a second set of super tiny calcifications but can't biopsy them due to the location so is recommending a mastectomy (left breast only) so I am currently mulling over my options. Lots to learn. I meet with a radiation oncologist next week and hopefully can ask some additional questions. I am very appreciative of all these posts on a variety of topics.

    Sorry - edited and then deleted the first post - need to figure this out a bit! :)

  • MBPooch
    MBPooch Member Posts: 229
    edited January 2019

    BvH531 - I chose BMX after my DCIS and Pagets diagnosis last year. Mainly due to previously B9 biopsies I'd had, it being stage 3 and just not ever wanting to worry about future testing and every little thing worrying me. I do believe outcomes are the same with either option so go with your gut and what you feel most comfortable with! Have you had any genetic testing? Not sure if that outcome would sway your decision.

  • BvH531
    BvH531 Member Posts: 4
    edited January 2019

    Thank you MBPooch. I did have genetic testing and do not have BRCA1 or BRCA2 - so that is a positive. I am leaning toward a lumpectomy of the original area with radiation and monitoring the second area. However, I am an A cup, so there won’t be too much left after a lumpectomy so ...maybe I need to reconsider. Thank you for your comment. I appreciate it. :

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