We are 162,872 members in 80 forums discussing 128,129 topics.

Help with Abbreviations

All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: ER-/PR- DCIS and impact on outcome

Topic: ER-/PR- DCIS and impact on outcome

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Mar 28, 2009 01:26AM

Eldub wrote:

I just found out (2 months post lumpectomy, 3 weeks into rads) that my grade 3 Comedo DCIS was ER-/PR- .  It had appeared weakly positive at initial biopsy, so this result was a surprise.  (Thank goodness I insisted they re-test for ER/PR.  The original biopsy was botched and they only got one tiny sample, so when the results were so weirdly weak (2%/10%), I wanted to have them confirmed and insisted they test the tissue removed at surgery.)  The cancer center I am going through does not test DCIS for HER2 status, as apparently there are no established treatment protocols to follow depending on the results.  And I'm told DCIS is usually HER2 positive - at about twice the rate of invasive bc, in fact.  My Oncologist (who I adore) is also nervous to test me for HER2 status because if it's NEGATIVE, then that puts me in a strange never-never land of having triple negative DCIS - which apparently no one knows anything about.  ??

What do you know about ER-/PR- and DCIS?  The Oncologist said that it does make my risk of recurrance somewhat higher, and that it also means any recurrance is more likely to be invasive, and aggressively so.  But my DCIS was small and the margins were good, so my odds of never having a recurrance still remains very, very high.  Arghhh.  Is there any research out there?  What does this really mean for me?  Should I insist on HER2 testing?  I have a very young child and want to be around, healthy and with no recurrances, for a very long time.  Should I quit rads right now and have a mx instead??  (I wish we'd known this BEFORE surgery - I might have made a different surgery choice.)

Thanks so much!

BRCA- but family cancer hx. I'm also the mom to a very busy toddler! Dx 12/3/2008, DCIS, 1cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
Log in to post a reply

Posts 1 - 10 (10 total)

Log in to post a reply

Mar 28, 2009 05:07PM , edited Mar 28, 2009 05:11PM by roseg

HER2 testing for just DCIS isn't appropriate.

The main reason to test for her2 is with invasive cancer, then it indicates it's aggressive and they might change your drug thearpy. With straight DCIS (no invasive component) the only drug thearpy that is approved is tamoxifen.

Since your DCIS is er/pr negative you probably could pass on the tamoxifen if you wanted. Since you have a young child you might want to consider it as extra protection against more DCIS, but that's a personal decision for you.

Log in to post a reply

Mar 29, 2009 01:17PM Deirdre1 wrote:

roseg is correct but there is another reason that Her2 should be considered and that is that the tissue samples from the facility you used could misplace or after time they could be distroyed.. If then a question or concern comes up where Her2 MIGHT have a place in the dx and treatment of DCIS then it would be impossible to get those results.  I had a Her2 done on true DCIS because I have heard stories of our local pathology lab loosing the tissues before the appropriate time, so I took matters into my own hands and requested a Her2..  It would be horrible if some new information came out for DCIS that showed either Her2 - or + could be addressed and there was now no way for you to know.. It's just a CYA at this point though...

Log in to post a reply

Mar 29, 2009 01:24PM Hockeymom1 wrote:

I too had ER-/PR - DCIS.  I also had a small amount of microinvasion.  Due to my BRCA1 status my oncologist assumes my Her2 would be negative also - meaning triple negative.  Because of my BRCA status I choose to have a bilateral mastectomy - too much risk of getting another cancer in the opposite breast.  I also had too much DCIS to do a lumpectomy on the cancer side. I saw another oncologist up at Duke for a second opinion.  He specializes in triple negative cancers.  He was not concerned about me having any further treatment.

Good luck to you.

DCIS 5cm+ w/0.5mm microinvasion Grade 3 ER-/PR- 0/2 nodes
Log in to post a reply

Mar 30, 2009 04:39PM grey wrote:

Dear Hockeymom1,

You had dcis with small amount of microinvasion & had bi mx done. Was chemo required after the surgery since microinvasion was found ? Did you have sentinel node biopsy done during surgery?

Log in to post a reply

Mar 30, 2009 05:30PM Hockeymom1 wrote:


 Nope, no chemo, no rads.  I did have SNB (sentinal node bx) and it was negative.  I follow up with my Breast surgeon every 6 months for follow up ( I see her PA every other 6 month - so a good breast exam every 3).  I saw 2 oncologists  - 1 being a top notch BRCA/triple negative oncologist up at Duke just to make sure chemo wasn't required.  He said that would be overkill.  I still have that there was any microinvasion as it makes me a little nervous that some cells "got loose". 

DCIS 5cm+ w/0.5mm microinvasion Grade 3 ER-/PR- 0/2 nodes
Log in to post a reply

Mar 30, 2009 05:34PM AlohaGirl wrote:

Sorry I don't have anything useful to contribute on your question.  It does bring up a question of my own though.  I don't see an ER/PR status on the path report from my biopsy (which was a stereotactic biopsy).  Have others received status on the report from a stereotactic biopsy?  I'm having an MRI early next week then meeting with the surgeon again late next week and I can ask him about the ER/PR if that is something I should have at this point.  Maybe I don't get that until after lumpectomy?  Thanks!

Dx 2/18/2009, DCIS, Stage 0, Grade 3, 0/0 nodes
Log in to post a reply

Mar 30, 2009 09:46PM , edited Mar 30, 2009 09:48PM by Eldub

AlohaGirl - it took a week or 10 days before I got the ER/PR path results.  My understanding is that it takes some time to see if how the cells respond to Estrogen and Progesterone (I had the actual dx within 36 hours of the stereostatic (sp?) core biopsy, but it was awhile later before the ER/PR results came in.  In my case, the post-biopsy appointment with the surgeon was scheduled out far enough to insure we'd have the full path report (with ER/PR) beforehand, so we'd have all of the information before making a decision.  I'd definitely ask in your case and make sure they're doing the path for ER/PR, but most likely those results just aren't back yet.

BRCA- but family cancer hx. I'm also the mom to a very busy toddler! Dx 12/3/2008, DCIS, 1cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
Log in to post a reply

Mar 31, 2009 10:21AM AlohaGirl wrote:

Thanks.  I got my path report very quickly after the biopsy, so that is probably the answer.  I will follow up with the surgeon when I meet with him next week.

Dx 2/18/2009, DCIS, Stage 0, Grade 3, 0/0 nodes
Log in to post a reply

Mar 31, 2009 03:37PM PSK07 wrote:

Alohagirl - I didn't get ER/PR status from the biopsy - it came with the lumpectomy.

Pam - adding LCIS & ALH to the mix, 8/25/08 Dx 8/3/2007, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
Log in to post a reply

Apr 1, 2009 12:22AM grey wrote:


Thanks for sharing your experience. Much appreciated.

Have faith in your onco & enjoy your new life ca free.