Core Biopsy and Triple Negative Diagnosis

SydSyd

Hello -

1) My sister was diagnosed about a month ago with DCIS High Grade+Comedonecrosis. She is currently dealing with insurance issues and second opinions and trying to decide where to have her lumpectomy/radiation - the first, and we hope last stage, in this process.

2) She went to NCI-desginated UCLA for a second-opinion last week. At this point she has only had a Core Biopsy but decided to get it re-analyzed for receptor info as this was her only crack at a second opinion. They told her it was negative - they did not say "triple" negative. They also said that this diagnosis could change based on the tissue they get from the lumpectomy which they  re-test for the receptors. They told her that at this point - negative or positive does not make a major difference. That she has to wait for the lumpectomy to know for sure.

3) Meanwhile, her original surgeon called to tell her that she is triple negative and that if she has micro-invasion or IDC, she will have to get Chemo.

4) I am completely confused - I have read a lot of Beesie's posts and other very informative ones here and it seems to me that she needs to wait to have all the info. There must be some reason that UCLA felt it was too early to say "triple negative."   It seems that also this depends on percentage of receptors and is not black and white. One Dr. could say triple negative and another could say no, not triple negative?????

5) Triple negative with DCIS is a different diagnosis from triple negative with IDC?? Yet, she could find that she has micro-invasion or  IDC after the lumpectomy and this would change treatment options again. 

6) At the moment, her DCIS tumor is 2.5 cm - until we know whether it is invasive or not and by how much - we can't use this to determine much - is that right?

7) Also - in terms of stages and T ratings etc...this can't be known before the lumpectomy right? I noticed on her intial core biopsy report it says TE1...but don't know what that means..

8) Finally - they want her to have the gene test. We come from an Ashkenaze background. Does being Triple Negative increase the chances that you have the BRCA1 or 2 mutation?

Thanks so much for all your help, Syd

meme31

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LRM216

When you test triple negative on biopsy path, you generally test the same on lumpectomy.  I was leery of this and had my receptors retested after lumpectomy and unfortunately, it was as they told me, triple negative.  But there are a few cases in which the tiny shred that is tested on biopsy did change when retested on lumpectomy or mastectomy.  All the oncs go by the path report from the larger surgery as they have either the tumor or all the DCIS to test, so final results will come from lumpectomy.  If she does prove to have any microinvasion or anything larger than 3 or 5 mm's, in all probablility they will recommend chemo and in all honesty, I would do it in a New York minute as this triple negative stuff can be extremely agressive.  There are gals on this board that did indeed have mostly DCIS with a small amount of invasive and did go on to Stage IV.  I hope this helps a bit and Beesie is definitely the pro with the most knowledge on this.  I wish your sister all the best,

Linda

SydSyd

Thanks Linda. I had read the posts about DCIS to Stage IV here, and was keeping it in the back of my mind. I will definitely remember it if needed.  Thanks for all the other info. Any other Triple Negative info would be much appreciated.

Did you have the gene test?  Thanks, Sydney

LRM216

SydSyd:

No, I did not "qualify" for the BRCA testing due to my age at diagnose (62) and the fact that there is no cancer anywhere on either side of my family.  Since my treatments were not going to change anyway, I chose to forego the $3,500 out of pocket cost of it.  Another good site for only TN breast cancer info and help is the TNBCfoundation.org site.  I am on that one too and get a lot of info and help there as well.  Having an Ashkaneze background could up her chances of the BRCA gene abnormality, but may not, only the test will tell.  The lumpectomy path report is the one they will go by as far as whether or not she has pure DCIS or if there is an invasive componenet.  If there is, and she is totally triple neg, you want to make sure her onc has expertise in treating triple neg.  Depending upon the amount of IDC (invasive) she may have will determine the agressiveness of treatment.  Keep us posted, please.

Linda